The Health Advocate

Advocacy and Genetics: Who Owns Your Genes--and to What End?

2007-03-04T22:14:00.000-05:00

On February 13, Michael Crichton published an op ed piece in the New York Times on gene patenting. Crichton’s piece argued that genes should not be patented:

Gene patents are now used to halt research, prevent medical testing and keep vital information from you and your doctor. Gene patents slow the pace of medical advance on deadly diseases. And they raise costs exorbitantly.

Crichton’s piece has been widely read, discussed and blogged about, including a thoughtful discussion of whether gene patenting is consistent with other patenting in scientific discovery or unique by Derek Lowe in the blog Corante.

The patenting of isolated genes as chemical entities is tricky. Yes, they are chemicals, and when they're isolated and purified like that they really are in a different state than found in nature. But their size is so far removed from many of the other things patented as substances that I can't help but wonder if a principle is being pushed too far. (The obvious other example here is the patenting of isolated proteins, which of course is also well established, for better or worse).

The patent law argument rests on a 1980 Supreme Court Decision in Diamond v. Chakrabarty, and is presented briefly along with a summary of arguments for and against gene patenting on the Human Genome Project Information web site.

Prior to 1980, life forms were considered a part of nature and were not patentable. Diamond v. Chakrabarty changed this with the 5 to 4 U.S. Supreme Court decision that genetically engineered (modified) bacteria were patentable because they did not occur naturally in nature. In this case, Chakrabarty had modified a bacteria to create an oil-dissolving bioengineered microbe.

In an unpublished letter to the New York Times (Feburary 14, 2007), Peter Arno,who teaches Health Economics in the Sarah Lawrence College Health Advocacy Program, and his colleague Michael Davis, wrote this response to Crichton’s piece.

Michael Crichton is right on target when he argues that gene patents inhibit medical innovation. However, this argument can be taken even further. In terms of new drug development, there is scant evidence that patents stimulate biomedical research or innovation. What they certainly do is protect the monopoly profits of multinational drug firms. Rather than stimulating creative drug development, patents promote the sale of high-priced drugs and massive expenditures on marketing pharmaceuticals for conditions prevalent in wealthy countries for which treatments already exist (better known as “me-too” drugs). What makes matters worse is that the Patent Office rejects an appallingly small number of applications. A good patent lawyer, it is said, can get a patent on a ham sandwich. When a patent system is so out of control, it is not surprising that innovation suffers.

[Note: A useful review of “the negative consequence of gene patents” can be found in Greenpeace’s report on The True Cost of Gene Patents: The Economic and Social Consequences of Patenting Genes and Living Organisms which summarizes these consequences as follows:

considerable increase in the burden on patients and health insurance funds
protracted litigation that may also severely impede research and development
a blockade of research and development by whole bundles of patents to be observed for individual technical innovations
hindrance to medical institutions, particularly in the field of diagnosis
obstruction of current proteomics research by hastily granted and too extensive gene patents
impediment of research and development, particularly in the field of infectious diseases
unacceptable dependence of patients with hereditary diseases on individual companies
danger to world food supply owing to the exorbitant cost and monopolization of seeds
new systematic dependence of medium-sized plant breeders
considerable financial risks and direct dependence of farmers
stepping up of international concentration process in the seed industry
new dependence of food industry on agrochemistry]

The issue of gene patenting has become central to the work of many patient advocacy organizations seeking to not only promote research related to particular genetic disorders, but to ensure that the voice of the patient—and the family—is part of the research planning process. These groups understand that in today’s research “marketplace,” the fact that very real people—often children—are the source of the tissue samples that enable researchers to find gene mutations, should mean that they are able to continue to play a role in the use of that research for testing or treatment. In another New York Times piece earlier this year (“Someone (other than you) may own your genes”), Denise Caruso, executive director of the Hybrid Vigor Institute, noted this concern and raised the example of families affected by the Canavan disease:

The degree of control that life patents grant their owners is of growing concern to scientists, human rights and patient advocates and ethicists. More than 20 percent of human genes have already been patented, and most of those patents are owned by corporations.
. . . . In the case of the Canavan disease patent, for example, a family afflicted by this rare genetic disorder initiated an effort to find the gene mutation responsible for the disease. They raised money, collected DNA samples and attracted researchers to the cause.
After a researcher found the gene in the late 1990s, he and his employer, Miami Children’s Hospital, patented it and began charging royalties on a genetic test to screen for the disease — despite the fact that they would never have found the gene without the efforts and the DNA samples of the afflicted.
Patient groups filed suit in 2000, contending misappropriation of trade secrets by using their children’s DNA without consent to obtain a patent. It took until 2003 for the parties to reach a confidential settlement; it allows certain laboratories to continue collecting royalties but lets institutions, doctors and scientists use the patented gene sequences without paying.

At the end of March, the two certificate programs at Sarah Lawrence, Applied Research Ethics and Public Health Genetics/Genomics, will come together to discuss with speakers and panelists ethical issues related to genetics and research. The Canavan Foundation situation and subsequent efforts by patient advocacy groups to control tissue banking and gene patenting, will be a focus of some of this discussion. Yet in the background now is advocacy of another sort: advocacy focused on pending Congressional legislation aimed at protecting the broad public interest. The “Genomic Research and Accessibility Act,” introduced by Representative Xavier Becerra, Democrat of California, and Rep. Dave Weldon, M.D. Republican of Florida, would “prohibit the patenting of human genetic material.”

Clearly discussion and dialogue between advocates in different arenas around these gene patenting issues is only beginning, but its importance is unquestionable.

Overturning Insurance Denials: A Cautionary Tale

2007-02-19T08:38:00.000-05:00

Its great to win a hard one. One of the things I do is to file appeals for people who have been denied payment by their managed care company. As Paul Krugman recently wrote about in the NY Times, a good portion of the costs of health care is spent by insurers paying the small army of administrative denial managers. Too often someone will call me after they have made their first appeal and blown their timely filing guidelines clearly stated in the fine print of every insurance contract. Once the 45 days are over (a typical time limit), if the patient hasn’t responded, they lose. That medical bill is theirs.

My case was a woman who went over seas and got pneumonia. Trying to do the right thing, she immediately called her insurance company with information that she had been hospitalized.

The denial came before she even got home: lack of medical necessity. All inpatient admissions are subject to concurrent review. Since my client was overseas in a way-out-of-network hospital, the insurer lacked any way to coordinate care.

One big problem was that when I got the case it was over a year old – timely it wasn’t. But I was able to find a clause in the contract where I could press the case, so I sent it out for external appeal to the Insurance Commissioner. You would think this office is there to protect consumers: not so. They, too, made a finding about lack of timely filing. See, the clock started ticking from the moment medical records were received. Apparently a phone call from a different continent was enough of a medical record for the IC’s office to blow us off.

But I had also sent the same appeal back to the original insurer, who called to ask, “What medical records?” I had attached 11 pages of medical records to these appeals, which were mysteriously removed before the appeal got out of the mailroom. Only the careful wording of my letter made the examiner call and asked me to fax the documents directly to her. And, we lucked out with the examiner, too. He gave us a fighting chance.

Voila! We won!

External Appeal? Don’t count on it. Unless you can demonstrate real malfeasance, I’m afraid your case won’t get a fair shake.

Cross-posted at http://trusted.md/columns/medical_bill_advisor

Following the Blogging Trail

2006-12-10T19:02:00.000-05:00

The trail started with a Google Alert: The Antidote to Simplistic Health Journalism, an interview by Nicholas Genes, second-year resident in emergency medicine, at Mount Sinai Hospital in NYC, with Emily De Voto an epidemiologist who blogs on The Antidote. DeVoto's goal is to promote evidence based health journalism--and health care. A huge undertaking.

One of DeVoto's blogging trails leads to the debate over obesity and its relationship to morbidity and mortality. DeVoto links us to the blog, Junkfood Science in which Sandy Szwarc reviews the campaign by the CDC to link obesite to mortality in the US and thus frame obesity as a public health problem. A study by Katherine Flegal published in JAMA challenges that construction (see Junkfood Science for important excerpts). As Szwarc concludes:

The whole “obesity” thing has been an easy sell because our culture has come to believe so strongly that thin is better and fat is bad, and so loves to hate fat people, that the idea of questioning it is inconceivable.

It is well worth browsing through The Antidote. Note especially, DeVoto's Grand Rounds. In December Grand Rounds included 37 links to other health bloggers in arenas ranging from Mental Health to Research to Policy, Public Health, and Insurance, and leading off with "In The Trenches," which loosely means bloggs by clinicians "in the front lines of practice" (although there are certainly other trenches in health care, including the trenches of health system change which more clearly resemble WWI death traps for advocates and politians alike).

Finding DeVoto's blog struck a responsive cord this week when I have particularly sensitive to issues of evidence-based practice and the lack thereof. We are engaged in a family "discussion" over the risks and benefits of Procrit for an elderly family member. (Procrit is epoetin alfa used to treat anemia, usually in people with serious kidney disease or as a result of chemotherapy for cancer, medications for HIV, or to prevent or treat blood loss before or after surgery.) Without belaboring the debate, it really revolves around the off label use of Procrit recommended by the cardiologists involved. Some of us are uncomfortable proceeding with Procrit for off label use without the evidence of treatment risks and benefits to guide us; others in the family feel that if a physician makes a recommendation, s/he can and should be trusted to know what is best. Anecdote vs. data again. Or, as DeVoto notes in her profile: "The plural of anecdote is not data." As advocates so many of us in the Health Advocacy Program face at home exactly the advocacy issues we research, discuss and act upon with school and work. Contextualizing these issues within a family dynamic, within the cultures of belief, within the clinician-patient or clinician-family relationships creates layers of meaning and nuances of communication that humble each of us. Would that prospective advocates and clinicians alike could have required experience as cared for and care giver.

“Just” listening no more…

2006-11-15T17:37:00.000-05:00

The following blog is from our colleague, Meg Gaines, founding director of the Center for Patient Partnerships at the University of Wisconsin, Madison. Meg is a fellow educator of advocates--graduate students from the many graduate and professional schools at U Wisc who take courses in patient advocacy and learn to be advocates in a supervised clinical program that serves patients and family in need. These thoughts about listening have become crystalized for Meg as she and her colleagues plan a new training program in patient advocacy for lay breast cancer advocates in the community. They seemed useful for all of us who work on our listening skills in order to hear, and thus to serve.

Words are so powerful – even little, qualifying words like “just.” Over the last few years, I have often asked students and colleagues what they did for a particular client only to hear them reply that they “just listened.” As if listening to someone is somehow minimal. As if listening to someone is anything less than an act of profound honor and respect. As if listening isn’t one of the most difficult things to do well. There’s nothing “just” about truly listening.

Listening requires me to set aside my own agenda. It necessitates that I suspend my judgments – sometimes dozens of them in a matter of minutes. I am called upon to put down my pen, turn away from my list of things to do, take my eye off my watch, forget about all the conversations I am reminded of as this person tells this story, fend off my overactive brain’s constant suggestions of what I would do if I were faced with this dilemma. Listening requires active focus. It requires me to step entirely outside of myself and take in what is being said in relation to the speaker – not in relation to me. Listening is hard work.

I suspect that “just listening” derives from the kind of self-focused, I-can’t-wait-until-she’s-done-talking-so-I-can-tell-her-my-story-which-is-much-more-amazing-than-hers sort of interactions that I, at least, have more of than I like.

Real listening happens when I slow down enough to set my life aside for a moment and notice, honor and accept another being into the space in front of me. It is work right up until I let go of me and settle into another. Then, it is peaceful and rejuvenating – it is that profoundly precious gift that comes from giving.

Take a moment sometime soon to set your self aside and listen deeply to someone else. Stay with it, even as your mind wanders through Judgment Junction and Suggestion Swamp, redirect it gently to the miracle life force placing this profound trust in you. Try to hear, see and absorb the significance of the words to their speaker. There is nothing “just” about this listening.

“Astroturf” Advocacy

2006-11-06T15:26:00.000-05:00

Earlier this month an article in Newsweek online (October 5, 2006) reported that there was a growing movement among medical centers—mainly it seems academic medical centers—and some physician groups to ban or regulate gifts from pharmaceutical companies. This includes token freebies—pens, notepads, post-its—from sales reps as well as more significant amounts spent for free lunches, underwriting educational programs and conference travel stipends. While the 24, 2006, “Doctors Urge Ban on Gifts From Drug Makers”)

Unfortunately there has been much less attention paid to pharmaceutical support for health/patient advocacy organizations, although potential conflicts of interest are similar and serious. On my office closet door I now have hanging a conference bag in which I am accumulating “trinkets” given away at health/patient advocacy conferences, mainly contributed by pharmaceutical companies who have helped sponsor the conferences. Many—perhaps most--advocates are only too painfully aware of the dilemmas they face regarding whether to accept pharmaceutical funding for their struggling organizations—how to do their valuable work without taking money from the very corporations that benefit from the diseases they are trying to fight.

The title of this blog comes from Drummond Rennie, deputy editor of JAMA, who calls advocacy organizations that are almost extensions of pharmaceutical company marketing departments, “Astroturf.” “Astroturfing in politics is the practice of disguising an orchestrated campaign as a spontaneous upwelling of public opinion.

A recent study done by New Scientist, “Patient groups special: Swallowing the best advice?”, sheds some light on the extent to which pharmaceutical and device companies fund patient advocacy organizations in the US.

New Scientist studied 29 US patient advocacy organizations:

o 20 US patient groups operating on a national level with annual revenues of more than $100,000 (randomly selected from GuideStar database)
o 5 US patient groups with revenues exceeding $10 million (randomly selected from GuideStar database)
o 4 US patient groups, again with annual revenues exceeding $100,000, associated with bipolar disorder, restless legs syndrome and attention deficit hyperactivity disorder, conditions highlighted in April by the journal PLoS Medicine as being susceptible to by the pharmaceutical industry.

Some survey results:
· Seven groups received 20 per cent or more of their funding from pharmaceutical and medical device companies, including all four linked to the conditions over which accusations of disease-mongering have been made.
· Groups that received more than 20 per cent of their funding from industry did seem to be associated with conditions that affect a significant number of people, for which a specific therapy exists and which require long-term treatment, therefore creating the potential for substantial profit.
· Groups in our survey that received no industry funding seemed to be for diseases that drug companies have little opportunity to profit by.
· The timing of donations also suggests a link to marketing interests, with donations to the advocacy group ceasing if the company stops producing drugs related to the disease.
· Just two groups - the National Women's Health Network (NWHN) and Breast Cancer Action - refuse to accept donations from pharmaceutical or medical device companies. "We want women to know that when they come to us, they are getting independent information," says Amy Allina, the network's programme director. "We think of ourselves as virtuous, but poor."
While patient groups deny any connection between their activities and the donor support they receive, a “gift relationship” does exist, say researchers.

Sharon Batt of Dalhousie University in Halifax, Canada, has just begun to study patient group behaviour and funding after years working in breast cancer advocacy, where she noticed a general pattern. Organisations that accept pharmaceutical funding "tend to advocate for faster review and availability of drugs, greater insurance coverage, and they tend to see 'direct-to-consumer' advertising as a benefit to patients." Groups that maintain financial independence, on the other hand, "emphasise safety over speed and are critical of direct-to-consumer advertising."
Complete disclosure of industry funding by patient groups is almost unheard of, but the massive American Heart Association, which boasts an annual revenue of more than $650 million, is leading the way. This month, it will begin posting an itemised list of pharmaceutical and medical device company donations on its website.

Sick of Pink

2006-10-27T10:50:00.000-04:00

We are starting up blogging again in October. How did I know it was October? Pink of course. First the emails from online catalogues soliciting my business by promising contributions to breast cancer research or advocacy. On my home email, Activa Sports beat out the competition with a whole “Pink Ribbon Collection." Then a friend who has had breast cancer sent out a mass email asking me to forgo my health concerns for a good cause and buy pink M&Ms.

October is National Breast Cancer Awareness Month, and to commemorate, we've created a special pack of M&M'S® Chocolate Candies. Each time you buy one of the specially marked bags, we'll make a donation* to The Susan G. Komen Breast Cancer Foundation. Help support breast cancer research and outreach programs while satisfying your sweet tooth!

Later in the month, the tempting email arrived telling me that the Entertainment Industry Foundation’s breast cancer programs would be delighted if I could purchase a pair of jeans for Lee National Denim Day thereby contributing $5 to the cause. Or, if I prefer, I could hold a special event—ideas available on the Lee web site—and just wear my Lee jeans to the event.

In search of more pink to buy I came across a megasite that not only lists all the sites that have “gone pink” to support breast cancer awareness, but cruises the web constantly for automatic updates: Pink for October. On this pink site was a breathe of non-pink air written by “jeanne” of The Assertive Cancer Patient blog. What caught my eye was the opening line, “I hate pink.”

When I was a “tomboy,” as girls who rode bikes and climbed trees were called in the 1950’s, I hated pink. Even as a preteen I knew that pink symbolized the stereotypes of ultra girliness. Today, of course, this color, the symbol of sexist stereotyping, becomes a metaphor for a mainly female illness. As a social marketing campaign it is very effective: now pink is forever associated with breast cancer, and presumably a new kind of “girly” assertiveness. Color branding of diseases and causes, I suppose, serves a certain purpose (red=HIV/AIDS; yellow=Lance Armstrong style cancer; green for genocide in Darfur), but as an advocate, it is difficult to believe in the long term benefit of teaching people to treat diseases the way they treat their favorite sporting teams: wear the colors and cheer for bigger and better results. The bigger results may include more research dollars for breast cancer but at the price of supporting a growing industry that is benefitting commercially from the disease.

Here is a section of jeanne’s essay with an important message. Check out her blog for the rest.

Gag Me With a Pink Ribbon
October 24th, 2006 by jeanne
I hate pink,especially the pink ribbons. I really do. I don’t understand what they are for… support and solidarity, something like that, but I’m not getting that from a little twist of pink metal pretending to be a ribbon.
. . . .
Instead of pink ribbons, I’d rather have national health insurance or any health insurance plan that insures SICK people. The way things are now, if you are young and healthy, you can get health insurance at a reasonable cost. If you are old or, God forbid, sick, forget it.

If you want to support people with cancer, forget the ribbon and lobby for national health care. Or for a state health insurance plan that is open to everyone, rich and poor, sick and well.

. . . .

Narrative, Advocacy and AIDS at 25

2006-06-11T18:07:00.000-04:00

It has been almost a month since any of us blogged on this site, which has nothing to do with the amount we have to say, and everything to do with completing the academic year and squeezing intense activity into the early part of June. For many of us involved in the Health Advocacy Program, these weeks have been opportunities to focus on the role of narrative in health & medical care, in advocacy and in teaching. We participated in the Narrative Matters conference at Arcadia University in Wolfville, Nova Scotia (just right for escaping the NYC metro area in late spring) where I chaired a panel on “Listening to the patient’s voice: An interdisciplinary approach integrating oral history, illness narratives and advocacy” that included Sayantani DasGupta, a pediatrician and Health Advocacy faculty member, and Pat Stanley, an alum. (Sayantani also delivered a second paper—an amazing combination of analysis, performance and media, “Cameras, scalpels and speculums: Popular film and the tragicomedy of pelvic exams.”) See Conference Program for other interesting papers.) Sayantani and Pat have also been faculty in the new Narrative Medicine Workshops at Columbia. This week the Writing the Medical Experience workshop begins at Sarah Lawrence. For the second year at the College, David Watts, physician and poet, is coordinating this intensive writing experience where professionals, patients, health consumers and caregivers teach, write, support, critique and listen to each other. (Evening readings by faculty are open to the public if you are in the area.)

I was reminded of the power of narrative and the role of narrative in advocacy last week when I read Abraham Verghese’s beautifully written op ed piece in the New York Times on “AIDS at 25” (New York Times, June 4, 2006, not yet online as of this writing). Verghese was a young medical resident 25 years ago when AIDS struck New York. "[T]he milestones of my life and medical career -- and of thousands of other doctors like me -- have since been inextricably tied to the history of the virus,” he writes. He went on to write My Own Country about caring for—and about—people with AIDS in east Tennessee during the next decade. Today he teaches medical students not yet born in 1981 “how the metaphorical veil of shame and secrecy that traveled with this virus tainted everything; how being an AIDS doctor could distance you from other doctors, and even from friends.” Verghese’ tribute to these early sufferers from AIDS, and to those who cared for them, is a tribute all of us in the advocacy community share:

My patients taught me about courage, about bravery, about organizing for a cause, about dying for one. . . .

We became zealots for the cause of our patients, even if zeal was all we had to give. We had no cure to offer, and so we began to leave the thresholds of our medical-industrial complexes and visit our patients in their homes, at their deathbeds. Paradoxically we discovered that our presence, our promise not to desert our patients, our continued care brought about a sort of healing, by which I mean helping the patients come to terms with their illness, with their deaths, and meanwhile diminishing for them the sense of spiritual violation that any serious disease brings, none more than this one.

. . . I watched with awe as politics eclipsed science and as gay activists rattled the cages of stodgy government entities like the Food and Drug Administration, and got results.

. . . Today I see so many of us who came of age at the same time now have one foot in Africa or Asia, as if we need the kind of challenge we once faced here. It is as if we have carried the lessons of the AIDS protest group Act Up abroad, to prove that one can make a difference even in a poor country, one can find ways to pay for and distribute drugs, one can make an impact on transmission from mother to child.

. . . On my desk I keep a picture sent to me by a friend, Rick Hodes, a doctor who has spent his professional years in Ethiopia. It shows a beautiful, chubby-cheeked Ethiopian child, wearing colorful local dress, and holding in his hand a photograph of a scrawny skeleton in rags. The photograph is of his former self, taken a few months before he got the H.I.V. medications that Rick scrounged money to buy. Victories are now to be won in that fashion, one child at a time.

. . . I think perhaps that is the legacy of my patients, the legacy of the nurses and physicians' assistants and social workers who taught me so much, the legacy of people from all walks of life who toiled against AIDS when there was no hope. My students seem to know what we had to so painfully learn: the secret in the care of the patient is caring for the patient.

Only Five Votes Away

2006-05-20T12:23:00.000-04:00

As Marsha Hurst notes in her May 15th posting, the Senate did not bring the Enzi bill, S. 1955, to the floor for further discussion. At this time it is not a threat to our health insurance coverage . Some believe this bill had no real chance of becoming law. After all, there was no companion bill in the House. The fact remains that 55 Senators voted YES for this bill to be brought to the Senate floor. This is frightening. Only FIVE votes more, and it would not have been derailed! Please stay involved and remain alert. Do not allow our our health care rights to be violated.

S 1955 Defeated--for now

2006-05-15T10:53:00.000-04:00

Happily the Senate voted against bringing S1955 to the Senate floor for discussion and a full vote, so the danger of its passage is averted--for now. (60 votes were needed to bring it to the full Senate and it only received 55) Great "eleventh hour" advocacy effort on the part of lots of organizations and individuals! Joe's comment on the last blog about how he and other PKU sufferers in states like New York that provide stipends for special diets and coverage of their protein supplements would have been adversely affected are important reminders: We need to guard those health insurance mandates of our states even more closely these days.

Another take on S1955

2006-05-06T17:18:00.000-04:00

Last night’s PBS show NOW was about a little understood group: the underinsured. There are people in states without those notorious and burdensome mandates for coverage, such as cancer screenings, diabetic supplies, emergency treatment, dental anesthesia, maternity benefits, prosthesis, metabolic disorders – well, you get the picture. If you want to see the whole list, Families USA has a state by state list of protections slated to be lost if the Enzi Bill (HR 1955) passes.
The Enzi Bill wants to allow small businesses to be able to form Association Health Plans ostensibly to be able to use the power of the marketplace to purchase health care like the big boys do . (I say ostensibly because it won’t really work out the same: they won’t be self-funded – just a group.)

Enzi takes the idea one step farther so that groups can form across state lines. This is classic Republican strategy: get a great title, give a cogent rationale, and leave out the nasty details. All the protections mentioned above came about due to individual state legislative action. Insurance is regulated by the states; if AHPs are allowed to form across state lines, no insurance board or commissioner will have jurisdiction, and plans can then cover, or not cover, whatever they like.

This is why it is so pernicious, and why you should call your Senator to vote against this bill. I tried on the “day of action” and couldn’t get through. Of course, I’m in New York, so I’m pretty sure Schumer and Clinton are opposed; but how about the rest of you?

BTW, American Cancer Society opposes its passage, too.

Crossposted at http://www.signalhealth.com

Have You Heard of S. 1955?

2006-04-28T20:11:00.000-04:00

An invitation and initiation to the World of the Blog! Another path along my journey beside fellow health advocates. Just got back from Washington, D.C., where I participated in my first Lobby Day and Congressional Briefing. I was there to lobby with the Eating Disorders Coalition (EDC). Most of you already know about my interest in eating disorders. I was able to meet with four Congressional Health Legislative Assistants to lobby for/against specific bills moving through Congress. I was on the Hill!

We lobbied for mental health parity (the “Wellstone Bill” H.R. 1402) as well as for eating disorder awareness, education, and prevention (H.R. 49 and S. 1325). We also lobbied for their companion bills to be introduced.

There was also a dreadful bill we lobbied against. When I think of advocacy, I usually think of lobbying for something. However, I was outraged to learn about the Health Insurance Marketplace Modernization and Affordability Act of 2005 (HIMMA), also known as S.1955 .

When I first saw that S.1955 was an amendment to the Employee Retirement Income Security Act (ERISA) of 1974, I had great hopes. I thought it would be a way to close the existing loophole for self-insured businesses. Not so! These businesses are currently exempt from state health insurance mandates. If passed, S.1955 would preempt the state mandates for even those not self-insured!

HIMMA voids current state health insurance laws unless the laws already exist in 45 or more states. Even then, S.1955 could change/weaken the individual state laws. Since only 39 states have mental health parity laws, HIMMA would void these. State laws governing cancer screening and treatment would also be affected.

Say NO to HIMMA. Tell others to say NO.

For more information on the state by state impact of HIMMA, go to Families USA.

Uninsured in NYC

2006-04-19T11:34:00.001-04:00

My friend David called today because he can't get out of bed. Around 50 years of age, David hasn't had medical insurance in quite a few years. He is, one would call, poor, but he has some assets that make him ineligible for Medicaid; the man owns a car. He makes too little to be even pay for Healthy New York, the state subsidized HMO for the working poor.

On Sunday he was reaching into his car to pick something up and felt a small twinge in his back. By Tuesday he was nearly immobile - flat in bed, barely able to turn over. Friends are bringing him food, because he can't prepare anything himself.
So what are his options? He can take an ambulance to a well equipped orthopedist for a diagnosis and then haggle about the price; he can take an ambulance to an ED, apply for Medicaid for which he would most likely be rejected, and then beg for a price reduction; or he can suffer, which is what he is doing now.
I'm stumped.
All suggestions welcome.

Crossposted at http://www.signalhealth.com

Another Demonstration We Are Headed in the Wrong Direction

2006-04-11T13:54:00.000-04:00

A new study by RAND is yet another demonstration of our penny wise and pound foolish policies. All our latest solutions insist patients are gluttonous overutilizers of care, demanding spurious MRIs and running to specialists for every twinge. At least, that's the current fashionable demon driving the consumerism bus. But according to RAND, in some instances, that thinking is completely backward:
Cutting drug co-payments for people taking drugs for chronic illnesses could save billions of dollars in medical expenses by prompting patients to take their medication and avoid hospitalization.

Isn't that a kick in the head? So those in Medicare D who have now reached the donut hole and may be neglecting to take their Lipitor might be appearing in the ER with greater frequency in the months to come. HSA holders (I mean the group on the edge that used to be uninsured - you know, the ones HSA designers say they were intended to help? Not those using HSAs as yet another investment vehicle)may be in the same position, scrimping on preventive care while keeping their insurance for that catastrophic event.

When I'm counseling someone on their HSA, my clients tend to think of it as, "I won't lose my house" insurance, not comprehensive health care. I wonder if Pitney Bowes offers an HSA, considering their health cost turn-around in 2001?

Crossposted at http://www.signalhealth.com

CDHPs are Much Worse THan You Think

2006-04-10T12:27:00.000-04:00

Matthew Holt over at The Health Care Blog posted a pretty interesting article over the weekend from the Miami Herald about one of the many glitches yet to be uncovered in using HDHPs.
It seems that the young lady had an earache, went to an urgent care center (no PCP?) and got billed for $350. Part if the problem was that the Urgent Care Center was out-of-network, something that it was her responsibility to know, a fact the Center didn’t bother to tell her when she presented her health card notwithstanding. (IMHO, at least part of the reason OON providers don’t tell the patient whether they are in or out-of network is that if they are OON, they often will get paid more by a managed care plan The patient, will of course have a larger co-insurance, too.) In this case, a HDHP takes advantage of the same abusive billing practice.

But this problem is bigger. The UCC billed CPT 99245, a level 5 consultation. A consultation is different from a visit in that it requires a specific request by another provider, which, if the story is accurate didn’t happen here. So that makes it an “initial outpatient visit” coded instead somewhere between 99201 and 99205.

The second problem is the level 5 code. If we assume the level of care (5) is the same, an example of a 99205 visit could be (as close to the specialty of straight internal medicine as I could get): “Initial visit for a 42 year old male on hypertensive medication, newly arrived to the area, with diastolic blood pressure of 100, history of recurrent calculi, episodic headaches, intermittent chest pain and orthopnea (trouble breathing unless upright).” Any of this sound like the severity of an earache to you?

A third problem is that she didn’t se a doctor; she saw a nurse practitioner. That drops the code even lower to perhaps 99211, although that is usually used for an established patient.

The bottom line difference in cost? Between $200 and $300.

So unless the HDHP comes with a current CPT (professional edition), a copy of the National Correct Coding Initiative (updated quarterly; also available on line), and transparent information about when these regulations are applicable and when they are not, and perhaps an independent call center for people who can’t figure it all out, HDHPs will continue to be a deeply flawed and bordering fraudulent product.
IMHO, of course.

Crossposted at http://www.signalhealth.com

Advocacy & Genetics Conference

2006-03-25T20:50:00.000-05:00

If you have not registered for our Conference, "Advocacy & Genetics: Arenas of Engagement" this coming Friday, March 31, do it now! It promises to be a really compelling day, with Troy Duster keynoting and presentations on controversial intersections of advocacy and genetics. Email me or call 914-395-2371 if you have questions or need more information about the Conference.

“The Health Care Crisis and How to fix it” or “What to do about it”

2006-03-25T20:33:00.000-05:00

This is—or rather, these are the titles of a must-read article by Paul Krugman and Robin Wells in the March 23, 2006 issue of The New York Review of Books. [Note: excerpts from this article are also posted on the Angry Bear blog] While not known for sensationalism, the cover title does suggest that Krugman and Wells will tell readers how to fix our broken health care system. The inside title is more realistic, promising only what we can “do about it.” And, indeed, while the authors do conclude that universal health coverage would “cover those now uninsured, and that it would be cheaper than our current system,” they go on to argue that the “political obstacles remain daunting” as they were more than a decade ago. In 1993 Clinton’s advisors knew that a single payer system would be the “least expensive way to provide universal coverage.” But Clinton rejected the single payer proposal for political reasons—and then got sideswiped anyway by insurers and a “baffled” public. Krugman and Wells regretably conclude that current compromise plans by political reformers would run into the same political problems as Clinton’s plan.

[I]t would be politically smarter as well as economically superior to go for broke: to propose a straightforward single-payer system, and try to sell voters on the huge advantages such a system would bring. But this would mean taking on the drug and insurance companies rather than trying to co-opt them, and even progressive policy wonks, let along Democratic politicians, still seem too timid to do that.

So what will really happen to American health care? Many people in this field believe that in the end America will end up with national health insurance, and perhaps with a lot of direct government provision of health care, simply because nothing else works. But things may have to get much worse before reality can break though the combination of powerful interest groups and free-market ideology.

But read the article yourself. Using as a vehicle a review of three new books on the American health care system, Krugman and Wells do an excellent job reviewing the three health policy crises that make up an overall crisis in medical costs:

First is the increasingly rapid unraveling of employer-based health insurance. Second is the plight of Medicaid, an increasingly crucial program that is under both fiscal and political attach. Third if the long-term problem of the federal government’s solvency, which is . . . largely a problem of health care costs.

In their article, Krugman and Wells review the inefficiency (and injustice) of our fragmented public/private system. They explain the “80-20 rule,” which describes how roughly 20 percent of the population account for 80 percent of health expenses (“half the population had virtually no medical expenses; a mere 1 percent of the population accounted for 22 percent of expenses”) and the impact of that rule on the peculiarly American phenomenon of employer-based health insurance. Until now, providing health insurance to workers has benefited the employer, but health costs are now so high that employers cannot cut benefits enough to stay competitive (recently announced attempts by GM to buy out a significant portion of their workforce illustrates this crisis).

Read the article for a good overview of Medicaid and Medicare, which account for the roughly half of our health care spending that comes from the government. Interestingly, Medicare—an extremely popular and efficient (only 2% overhead) program--IS universal coverage—but only for those 65 and over. Many of us would argue, as Krugman notes, that expanding Medicare to cover the whole population would give us a Canadian-like (also called Medicare) single-payer health insurance system. [Interestingly an NPR ad for the Medicare Rights Center today used the tag-line, “Medicare for All.”] And Krugman and Wells include the always convincing international health comparison table, comparing Canada, France, the UK and the US on a number of economic, health status, and health services parameters. But rather than summarize or site more, get the article yourself and hold onto it. It’s as good a review of the current economic status of the health care system, and as compact an argument for a single payer system (and ultimately a government health service that can actually ration care fairly and efficiently, as the VA is doing so well in the US today) as you are likely to find.

Too Poor To Be Sick

2006-03-18T11:15:00.000-05:00

As my inaugural attempt at writing a blog, I thought that I would have trouble picking an IMPORTANT topic. Not a worry. The pharmaceutical industry was happy to oblige. The new Medicare part D was not confusing enough and the benefits of the various offered plans were not elusive enough. Now Merck has sold its rights to two cancer drugs, Mustargen and Cosmegen, to other companies and the price of the drugs has escalated exponentially – in one instance from $77.50 for a 2 week supply to $548.01 for the same amount (The New York Times, 3/12/06.) Even without a sale, the same article points out that Genetech will double the cost of its colon cancer drug, Avastin, so that the price tag will be about $100,000.

At these rates only the super rich can afford to get sick. Should the rest of us then fold our tents and simply prepare to suffer and or die? As an attorney, I understand clearly that corporations are in the business of making money and that their loyalties lie with their shareholders. But patients are not consumers and life saving or life restoring drugs are not commodities like cars. While many of us require a car in order to get to and from work or even to do our work, the car, as long as it runs and is safe, can be second hand, old, dented, whatever. That does not apply to drugs, especially drugs that can make the difference between life and death, or working or not working, or comfort or pain. It seems to me patently unethical to put the profit motive ahead of the human purpose. But so long as we allow industry to change the language to “consumer” and “product,” then the argument for more patient friendly approaches will fall on dead ears.

Corporations may not have a heart and a soul but as ethicists we must begin to change the vocabulary and dialogue to bring about affordable drugs along with accessible health care.

"Political Science"

2006-03-13T11:26:00.000-05:00

I highly recommend everyone read Michael Spector's article in the March 13 New Yorker, "Political Science: The Bush Administration's war on the laboratory."

There is a great deal to say about the examples of politicized science Spector writes about, but let me start by giving the conch to a young friend, Deborah Popowski [deborah_a_popowski@yahoo.com]who emailed the following:

Dr. Reginald Finger is a member of the Advisory Committee on Immunization Practices (ACIP), an influential government committee linked to the CDC that advises the Administration on vaccine-preventable diseases.

His views on the policy considerations that the Committee would take into account should an HIV vaccine became available:

"'We would have to look at that closely,' Reginald Finger, an evangelical Christian and a former medical adviser to the conservative political organization Focus on the Family, said. 'With any vaccine for H.I.V., disinhibition' - a medical term for the absence of fear - 'would certainly be a factor, and it is something we will have to pay attention to with a great deal of care.'"
[This quote was] buried in a frightening article on the possibility that the Bush Administration will refuse to approve a highly effective HPV vaccine -- an immunization that would likely prevent cervical cancer, killer of nearly 5000 American women each year. Current opposition to the vaccine centers around the fear that inoculating high school girls against a sexually transmitted virus will send the wrong message. Meanwhile, studies show that more than half of Americans become infected with HPV at some point in their lives.

Dr. Finger speaks about the HIV vaccine in the hypothetical. But his views and power on HPV are very real, and very timely. And his statement strikes me as the most horrific, scandalous, and unforgivable thing I have heard in a long, long time - for a public official, a scientist, a father, a person to say. Apparently, he - and some of the other people running this country - value their daughters' virginity more than they do their daughters' lives. Given the power, they might choose not to eradicate cervical cancer. And one day, AIDS. Why get rid of fear of disease and death, as long as there's a chance it might dissuade women from having sex?

If this strikes any kind of chord in you, please e-mail me. And forward this on. I feel the need to do something. I think this man needs to be reviled, shamed on a scale so large that he will never be allowed to hold a public position ever again. Apparently, he steps down from ACIP this year, but who knows where he will go next. Someone should be keeping an eye on him, making sure that his views are widely known.

FYI:
FINGER, Reginald, M.D., M.P.H.
3470 Flying Horse Road
Colorado Springs, Colorado 80922
TERM: 04/22/03-6/30/06

The Ghost of Hospital Bills Past

2006-03-10T22:00:00.000-05:00

This can't be happening. I have a client who was sent to collections for a medical debt. She called me in a panic and sent me the notice from the CA (collection agency). I called them, sent in my HIPAA, and faxed a notice of immediate dispute, requesting a validation of the debt.

A few hours later I am finally able to speak with a supervisor about it. It seems the CA bought the debt, sent out the notice, but has no paperwork on it - that won't be available for another month. So my dispute is, ummmm, unable to be posted because there is no place to post it - the paperwork hasn't arrived. And they won't send me a notice that I have placed it in dispute; which means that if 30 day passes it could go directly on her credit report.

But this is the best part: it's from 1996!! $522 from ten years ago. New York Hospital must be cleaning the closets.

Crossposted at http://www.signalhealth.com

The Uninsured are Special

2006-03-06T11:04:00.000-05:00

Last night’s 60 Minutes lead story was just a tiny peek at a scandal that has remained almost entirely hidden: the way the uninsured are charged if they find themselves in the financially awkward position of needing hospitalization. Two examples were interviewed. The first was a family man who repairs gutters for a living, doesn't make enough to purchase health insurance, and fell off a roof. He owed nearly $250,000 for his hospitalization.

Another entrepreneur, darling of the Bush idea of the American Spirit at work, developed diabetes causing him to become uninsurable. He then had a mild heart attack and received two cardiac stents during a 72 hour hospitalization costing him $41,000. The complaint here was not the cost of the hospitalization per se, but that he was charged $19,000 for stents costing the hospital $4600.

Lest you think this only applies to big ticket items, think of an IV solution costing the patient $175 when the same solution is available to be purchased for $12.36, or a standard non-prescription item marked up 100 times what it would cost if I bought it at my local drug store, or my personal favorite, $53/pair for non-sterile disposable vinyl gloves. If the bills of these two individuals had been reviewed, there is little question these sorts of mark-ups would be found.

I called a local hospital to find out their policy for the uninsured: if the patient made less than $18,000 per year, they were eligible for Medicaid; other wise it was full price.
And I wouldn’t want you to believe this is only a hospitalization problem. I’ve seen providers billing for a surgical procedure at four or five times what an insurer would pay for the same service, and ten times what Medicare would pay. Negotiating with the doctor’s biller is like talking to a stonewall, so even if the hospital relents and gives the uninsured patient a break, the doctor simply says they won’t negotiate; the price is what it is. Without a finding of outright fraud (which I find with regularity, BTW), “negotiating” with a doctor earning in the mid six figures for a patient making $50,000 is nearly hopeless. They must, you understand, pay those high malpractice costs.

CrossPosted at http://www.signalhealth.com/node/617

Listening to CKLW from Widsor, Ontario

2006-02-19T13:35:00.000-05:00

I was up late last night and pulling in a radio station I used to listen to in high school. I come from Detroit, otherwise known as the Motor City, and when I got tired of listening to the MoTown Sound, I'd switch over to CKLW in nearby Windsor Ontario.
An ad came up that struck me: It began with hospital sounds - faint regular beeping, perhaps a soft rustle of starched clothing. Then a woman sounding caring but officious said something like, "Mr. Smith? How are you feeling today?"
A deep, older male voice answered, "Much better, thank you."
She went on, "The results of your tests are in and you are well enough to leave; you can go home today."
Then there was a pause, and the man said, "Please, I'd like to stay another night?"
And an announcer broke in that this patient was homeless, and had nowhere to go.
This was an ad developed by a charity seeking donations for the homeless population. Universal access to health care is apparently so solid in Canada that such an ad can be produced with no thought that anyone will complain about the free loading homeless sucking dollars out of the hospital.
I'm not advocating that the guy should use the hospital as a free hotel, but it made me wonder how they do it. Does anyone in Canada understand what "sicker and quicker" means? What happens when a patient goes over the ALOS? Does he stay? Does the hospital now classify him an outlier? He has no address - has the hospital applied then for "emergency Medicaid?" Do they overcharge him so they can add to their bad-debt or charity care totals and therefore receive more DSH payments?
They used universal health care access to demonstrate the problem of homelessness.

Just made me wonder.

Crossposted at http://www.signalhealth.com

DID ANYONE REALLY THINK THIS WOULD WORK? (Part 1)

2006-02-16T12:16:00.000-05:00

The marketers must have worked overtime to make the new Medicare drug benefit so complex that informed choice is impossible. I've now helped half a dozen people through the choices; I've been on the web site and signed people up to a plan I was confident was the best choice for them, only to find out that there are parts of the contract unrevealed until you've made the contract.
The first thing that happened was the co-pays changed. The PBM said that the web-accessible information was really just a suggestion - it wasn't supposed to be 100% reliable.

Great.

I have looked at all forty-seven plans available in my zip code; things one might want to know are not ON the CMS site - only some of the comparison data. If you REALLY want to be a good shopper, you should visit each plan's web site, and maybe also make a call and inquire if you have other questions. Of course, when I did that, the marketer on the telephone said she didn't know, but after I signed up I'd be sent that information.

In today's America, conscientious health care consumers must be deceived and coerced before finally relenting to buy a pig in a poke.

crossposted at http://www.signalhealth.com/node/582

WHAT IS THE COST OF CARE?

2006-02-16T12:14:00.000-05:00

I have of late been resubmitting claims for a surgeon who has been denied payment for one reason or another. Who knew the any insure that was not a CDHP had a deductible of $10,000? Or a procedure paid for at $5500 for 75% of all insurers is paid less than $1500 by another insurer. Don’t wonder why increasing numbers of physicians are leaving managed care; given that kind of disparity, it would be crazy not to.

No one actually knows what to charge for anything anymore. Medicare makes a determination based on a formula including geographic and market basket data, the cost of labor, and many other things, and their payment is supposed to be the cost of care plus a small percentage profit. Because of the many bills I review, I can see what they pay – and I don’t see how a provider could stay in business with such miserable compensation.

So if Medicare pays a provider $175, while insurers pay between $300-$450 and then the uninsured are charged $600-$700 all for the same procedure, certain calculations come into play: what is the mix of patients I must have to make my bottom line $X. Do I practice in an area of heavy managed care penetration and what insurers are they? What are their internal benchmarks I must meet? How many Medicare patients can I realistically afford to serve? If a patient comes to me with a point-of-service option, how do I know he/she can really afford to pay me if I balance bill them?

What does any of this have to do with good health care? Nothing.

Crossposted at http://www.signalhealth.com/commentary

Wyeth Double Crosses New Yorkers

2006-01-23T18:05:00.000-05:00

I am copying below an email from Shawna Irish, a Health Advocacy graduate student and Medicare Rights Fellow. Shawna has been counseling older people about Medicare Part D (see her posted comment about AARP Medicare Part D plan on a previous blog).

Friends and fellow advocates,

I am sending this email to alert you of a huge action recently taken by Wyeth Pharmaceuticals. As many of you may know, EPIC - NY state's pharmaceutical assistance program, provides excellent drug coverage to New Yorkers over the age of 65. What's great about EPIC is that it covers most drugs, has pretty low copays, and is creditable to the Medicare Prescription Drug Benefit. New Yorkers love EPIC and want it to keep providing great coverage. Sadly, Wyeth Pharmaceuticals has pulled out of EPIC (see attached). This means that drugs such as Ativan, Effexor, Premarin, Prempro and Protonix will no longer be covered by EPIC, leaving many seniors having to foot the entire bill themselves. Truly, a sad day for many seniors.

I'm not sure if this is a worthwile venture, but I'm at a loss for any other ideas. I have included the address for 2 headquarters for Wyeth. I am suggesting a letter
writing campaign. The Medicare Rights Center has gotten the word out to the press about the situation, but really is not able to do much else. If anyone has any better ideas, please share them with me. This is a huge upset, as Wyeth drugs are quite popular and often hard to substitute.

Here are the addresses for Wyeth:
Wyeth Worldwide Headquarters
5 Giralda Farms
Madison, New Jersey 07940

Wyeth Pharmaceuticals Worldwide Headquarters 500 Arcola Road
Collegeville, PA 19426 Phone 610-902-1200

Thank you,
Shawna Irish

This is the letter New Yorkers received from EPIC, which includes a list of the medications they will no longer be able to get discounted through the State program:

Dear EPIC Participant:
Wyeth Pharmaceuticals has announced it will no longer participate in the EPIC Program. As a result, the drugs listed below will no longer be available through EPIC and you will need to either talk to your physician about substituting another drug or pay the full price of Wyeth Pharmaceutical products.
Wyeth Pharmaceuticals has indicated that the reason they are withdrawing from the EPIC Program is that they are no longer willing to provide discounts required by law that help make sure New York State pays reasonable prices for their drug products. As a result, EPIC will no longer be able to cover drugs that are manufactured by Wyeth Pharmaceuticals.
As noted above, if you are now taking any drugs manufactured by Wyeth Pharmaceuticals, please speak to your physician as soon as possible to find out if there is another product which can be substituted. Most other manufacturers do participate in EPIC, and may offer products which can be used instead of the Wyeth Pharmaceutical products.
The following lists the Wyeth Pharmaceutical drugs being used by EPIC enrollees that EPIC will no longer be able to cover as of February 1, 2006.
Ativan Inderal Materna Phenergan Protonix Sectral Zosyn Cordarone Inderide Minocin Phospholine Iodide Pyrazinamide Sonata Declomycin Ismo Mylotarg Premarin Rapamune Tenex Diamox Isordil Neumega Premphase Reglan Zebeta Effexor Lodine Oruvail Prempro Rheumatrex Ziac
Again, we urge you to consult with your physician or your pharmacist before you need to have your prescriptions filled. We deeply regret the decision by Wyeth Pharmaceuticals to withdraw from the EPIC Program. If you have any questions, please feel free to call the EPIC Helpline at 1-800-332-3742.
Sincerely, Julie A. Naglieri
Director

More about pharmacies & Medicare Part D

2006-01-12T12:28:00.000-05:00

Last night I stopped at the local Duane Reade to pick up some toiletries and found they were prominently advertising one particular Medicare Part D plan—CIGNA’s. I don’t know what the partnership deal is here, but I recalled the popular (Democratic) NewDonkey blog noting a related problem with seniors relying on their pharmacists for advice on prescription drug plans. This is the NewDonkey blog from December 29:

I've been trying to sign up my mother-in-law for the Medicare Rx drug benefit, which her current insurer is forcing her to undertake under penalty of massive premium increases. And as anyone who's dealt with this particular beast can tell you, the new program is about as easy to navigate as The Name of the Rose. I know a fair amount about Medicare, and health insurance generally, but still, I'm terrified that I'm making serious mistakes. I cannot imagine what this is like for anyone without internet access or a rudimentary knowledge of the new system. I gather millions of seniors are depending on their pharmacists for guidance, which would be fine except for the fact that a number of drugstore chains are sponsoring or cosponsoring plans themselves, creating all sorts of conflicts of interest.

Medicare Part D—Again!

2006-01-10T11:49:00.000-05:00

This is, I guess, an update/follow-up on Lin’s blog of November 28, “No Surprises Here.”

Today’s New York Times has an op ed. piece ("Attention Medicare Shoppers . . .") by a family doctor advising us to shop carefully for a Medicare Prescription Drug plan. “By asking the right questions and comparing plans, the savvy consumer can save more with Medicare than at Macy's,” suggests Lisa Doggett. She goes on to describe how, since she is routinely cost conscious when prescribing drugs to patients, and looks for substitutions and generics when possible, she applies this strategy to searching for a Medicare Part D plan for her grandmother. At first Doggett is “dismayed.” “The "best" plan cost $3,242 annually, even more than her current drug bill [about $3000] without any insurance.” But by being a smart shopper, she is able to reduce her grandmother’s cost for a plan significantly.

I studied her medication list and discovered that with a few medically insignificant changes, she would reduce her total drug costs substantially. The key is understanding that most medications are considered part of a "class" based on how they work, and each class usually includes two or more medicines of similar effectiveness. . . .

Reviewing my grandmother's medication list, I removed just one medicine, Prilosec, a heartburn drug. My grandmother was getting it by prescription, but since 2003 it has been available over the counter for less than $25 a month. By switching to the cheaper version, my grandmother lowered her projected costs, according to the Medicare Web site, to $1,945 annually, a net savings of more than $1,000.

Further switches among prescription cholesterol and blood pressure medications lowered her costs further, to only $960 annually if she chooses to receive the medicines by mail (or to $1,267 if she prefers the local pharmacy). I found these savings by reviewing the formularies on the Web sites of several different plans and switching her to medicines that were "preferred" under the drug benefit. Once her doctor agreed to the proposed changes, we signed her up.

Is this a model for the rest of us? Now really!!

Yes, most of us who are in the health professions could probably do what Lisa Doggett did, but first, as my mother always told me, time is money. I was already appalled at how long it took to compare plans on the Medicare site: you can only do three at a time. What is that all about? And some plans have no donut hole, so you really have to look carefully to do the comparison because premiums are deceptive. And then, if you are not an MD with some prior knowledge of these drugs, the research it would take to take the next steps Doggett advises is daunting: check to see if there are OTC equivalents, find the formularies, make reasonable judgments about substitutions, contact the various doctors and get approval for these changes. No, it is frankly an outrage that this kind of research is required in order to make the best decision about a Medicare “benefit” plan. Certainly this is a new kind of elitism: the small group of older people who have younger relatives who are doctors willing to spend this kind of time (primary care probably) form the elite group who will be able to make the smartest shopping decisions.

Now for the kicker. Remember how the AARP’s support put the votes over the line and enabled this outrageous prescription drug bill to be passed? I am now hearing repeatedly that people are choosing the AARP benefit. In fact, it seems to come up first in the list of benefits to compare. Funny thing about that. I called a pharmacist recently to see which plans the pharmacy was on (since the name did not come up in the list—another glitch in the Medicare.gov plan finder program) and the pharmacist, without prompting, advised me that most of his customers were choosing the AARP plan.

We can use the AARP actions as a case study in advocacy conflict of interest for our graduate students. But frankly, the whole picture makes me frustrated and furious. And, to be truthful, I have not yet found the best plan for my in-laws.

Here we go unraveling . . . .

2005-12-26T13:39:00.000-05:00

Inspired by Paul Krugman's column today and events of the last week(s), I thought I would revisit the perennial favorite health advocate's topic: health care for all.

According to Krugman,

Health care seems to be heading back to the top of the political agenda, and not a moment too soon. Employer-based health insurance is unraveling, Medicaid is under severe pressure, and vast Medicare costs loom on the horizon. Something must be done.

This has been one of those periods in which the cost of paying for health benefits for workers and retirees threatens to shut down corporations and municipalities. In my most optimistic periods I think that this "unraveling" of our expensive, inefficient, inadequate and patchwork system will finally push us toward a national solution. Yet somehow the system must still be working, at least for the private sector, since we are not seeing big business rise up to demand that health benefits become a public, not a private responsibility. We can only assume that as long as workers are willing to "take the hit" and pay an increasing amount of the costs of their care, employers will continue to see employer-base health insurance to be working to their advantage.

Thus it was with pride--at least in being a New Yorker--that we watched Roger Toussaint refuse to agree to the kind of two-tiered contract that workers around the country have been accepting in order to keep their benefits. Many in New York, including those who consider themselves supporters of labor, bristled at the refusal of the transit workers to accept even a 1% contribution--and that only for future employees--to their health benefits. After all, most of us who are private sector employees have been contributing far more than that for over a decade.

Toussaint's stand, however, had that wonderful ring of American ideals (dare we remember the Dennis Rivera of old).

"We will not sell out the unborn," Mr. Toussaint said in refusing to agree to lower benefit levels for future employees than for current employees. "We believe that future generations of transit workers should be better off than us, just as we are better off than past generations of transit workers" (New York Times, December 19, 2005). (Since there is no contract yet, it is still possible that Toussaint will end up holding firm on pensions but giving "a little" on a two-tiered plan for health benefits, according to Stanley Aronowitz, a City University of NY Sociologist quoted in the December 24th New York Times.)

But clearly the only sensible answer to the problem of rising costs of covering health care--and to the growing problem of retiree benefits that are threatening to become extinct in the private sector and to bankrupt local governments--is a national health program. I suggest you revisit the Physicians for the National Health Program web site and read (or reread) the "Proposal of the Physicians' Working Group for Single-Payer National Health Insurance" published in JAMA in August 2003.

A more recent cause for some optimism is the Emily's List fall survey, which showed that healthcare was a particularly important concern for women, and could impact how they vote in the midterm elections in 2006. The findings, among other things, noted that health care and health care costs are "winning issues" for Democratic candidates and that "Independent women, a key swing group, are looking for action and seeking a voice and leadership on the health care issue."

So, as a health advocate, my New Year's wish is that the bumper sticker, "Our National Health Plan: Don't Get Sick" (featured in my young friends' very funny and wise collection, Actions Speak Louder Than Bumper Stickers) will no longer be humorous because it is true. I guess that's a lot to wish for, so let's just hope that as the current system unravels we can take effective action toward an alternative that will acknowledge our public responsibility to truly provide health care for all at a cost that society can afford.

The Pathologists Report

2005-12-20T12:17:00.000-05:00

I blogged about an uninsured client I have here on December 7, and cross posted at SignalHealth. It was picked up by the Kevin MD web log where a pride of irate MDs, set upon me, daring me to stand up to their criticism, mostly cherry picking my rhetoric and complaining that, HOW DARE I QUESTION THE DOCTOR"S CHARGES!! THE DOCTOR MUST BE PAID!!!

No one mentioned the anesthesiologist that wasn't there but charged as though he were, the clearly up-coded ED Doc, the unbillable supplies, the inflated room costs.
No, what sparked their ire mostly was that I was not sure I would recommend paying the Pathologist what he was said he should be paid, according to his coding.

The specimen is a miscarriage; the billing was coded as high as a pathologist could: gross and microscopic examination - as high as for a full mastectomy with nodes, for instance, or a colon resection, or an extensive soft tissue dissection. They shrieked that I didn't have all the records yet, so I shouldn't have written about it at all.

Well, now I have the records. The narrative is only of the gross examination. A total of five slides were made of both specimens (two of the fetus and three of the placenta), noted only as "representative specimens." There is no microscopic narrative. So I can't even tell that the pathologist looked at the slides - only that he took them. Actually, I can't even tell that without obtaining another record.

So tell me, Doctors, how would you code this? You think this is a level VI? The charge difference between a simple gross examination is about $400. The correct designation lies somewhere in between, and probably closer to a Level III. If you don't want to call this fraudulent (a word that really got their dander up), what is it?

Cross posted at http://www.signalhealth.com/node/550

White House Conference on Aging Removed from Life Support

2005-12-15T10:20:00.000-05:00

There's an interesting post over at http://www.signalhealth.com/node/514 about the decennium White House Conference on Aging. (Full disclosure: I am a contributor on this blog.)

Hint: The White House didn't attend.

Further, they "lost" the papers to be presented and all in all look to have pretty well fouled up the Conference. Never mind - another one is scheduled for 2015.

It's Health Care, But Not As We Know It.

2005-12-15T10:11:00.000-05:00

The first non-partisan survey is out on Consumer Driven Health Plans. Jointly sponsored by The Commonwealth Fund and the Employee Benefit Research Institute, the data is clear: owners of CDHPs like them less than people with more traditional, or comprehensive health care plans.

It's easy to see why. CDHPs are suppposed to transfer some of the risk of health insurance on to the patient, er, consumer. Once the consumer is sick, they get to make a choice: "Am I sick enough to buy a doctor, or do I think I will get better by myself?"

This choice is based on making a financial investment in your own health, that is, would you pay money to get whatever malady you are suffering with fixed?

Of course you have no way of knowing what sorts of prices you're being faced with, not being a diagnostician or privy to the art and science of medicine. But even if you knew your diagnosis, one of the findings in this study was that the tools for making these sorts of decisions, called "cost and quality infomation," is simply not provided by most plans. Even if it were, the survey says that the customers of health plans are not really inclined to trust them.

And why should they? Last spring UHC cut 75% of its doctors from their plan in St. Louis, based on what the MDs were willing to accept as payment. The identified "quality" doctors were those accepting the cheapest rates.

So, let's say you decide need to see a doctor, you then get make another choice: which one? The way many plans are set up, you would pay different amounts for different doctors; significantly more if you go out of network. There has been quite a bit of discussion on the importance of these tools, and what sorts of data ought to be included. Successful CDHPs should have data on providers and costs readily available.

Funny - no one talks about outcomes. I guess that's not very important.

CDHCs change behavior exacly the way its advocates said they would: they make people more cost conscious consumers of medical care.

But this study also points out that the early critics were also right: out-of-pocket costs are higher, and more people either delay or forego care due to costs.

Insurance companies have been trying for years to get out of the insurance business and with the CDHP they almost have their wish. Most of the risk premium has now been transfered to the patient. Denial of payment will become a thing of the past, as patients deny their own care due to rising out of pocket costs. The twin demons of expensive technology and the aging demographic have become temporarily subdued.

There has been lots of talk lately about universal care and the growth of the uninsured population. (Actually, the numbers have remained fairly steady, attributed often to Medicaid picking up the check.) Employers are protesting that the high costs of health insurance are unsustainable. CDHPs and their cost shifts may release some of that pressure, allowing the dysfuntional employment benefit system to totter on a few more years, paying the middle men far more than they are worth, for services that add nothing to the common good of the nation.

Lin
CrossPosted at http://www.signalhealth.com/node/513

Health Care and the Cost of War

2005-12-14T17:13:00.000-05:00

Check out this great "counter" and find out how many kids we could insure, or people with HIV/AIDS we could treat, or immunizations we could give (or other public goods and services we could pay for) if we weren't paying for the "Cost of War."

A Helping Profession

2005-12-07T22:04:00.000-05:00

My client was having a miscarrieage; she is uninsured. In the emergency room she was given epidural medication, then left alone for four hours. She miscarried by herself, in an observation room off the ER; the nurses checking every so often.
She was then taken up to obstetrics (cruel in and of itself), cleaned up, and placed in a bed.

Her bill is almost $10,000.

Now let's look at the problems on this bill. The anesthesiologist gave her an epidural and is billing her for 6 hours of monitoring. So I ordered the anesthesiology record and it is practically blank. After he anesthetized her, he simply left. His charge is over $1000.

The hospital is billing her for a delivery room she didn't use, and hundreds of dollars worth of non-sterile and sterile supplies that CMS says are not separately billable. The Cefotan she was given comes in boxes of ten for $120. My client was charged $78 per container.

What proceedures did the doctor perform? Aside from the initial evaluation and management, he apparently performed none. The E/M is coded as high as possible: as high as being hit by a bus, as high as a gunshot. At least he didn't charge extra because it happened after supper time.

She was charged $38 for 8 squares of gauze. She was charged for three trays of supplies, none of which is legally billable.

She was given an ultrasound that showed, yes, she was indeed having a first trimester miscarriage, something she disclosed in the history.

The only really legitimate charge is, sadly, the pathologist when it was all over.

What shall I do with this? In addition to being overpriced, the way this woman was treated is profoundly disturbing.

I'll admit that I don't have every piece of information - maybe the ER was particularly busy and no one could stay with her. Little doubt the staffing ratio is less than optimal for the physical care of patients, much less their psyches.

Providers are also being less than forthcoming with the records I need. It is difficult to even obtain an itemized bill much less anything with codes on it that will tell me precisely what happened to this woman, which doesn't play well with an advocate for the uninsured.

I shall be challenging this bill to try and bring it down by 75%. The only Doc at all sypathetic is the pathologist who dropped his fee when he heard she was uninsured. His bill I'll leave alone. Maybe.

Lin

Crossposted at http://www.signalhealth.com/node/505

No Surprises Here

2005-11-28T18:02:00.000-05:00

I'm giving a presentation on the Medicare Part D to a group next week, so I thought I should go to the Medicare Prescription Drug Plan Finder and give the software a test flight.

Choosing a plan was supposed to be simple: just plug your current medications into the Medicare website and the computer will tell you the plans best suited for you to buy.

I am depressingly healthy, so I called up a friend with high medication costs. In my zip code, which is how the search begins, there are 47 free standing prescription plans available and 19 Medicare Advantage Plans (managed care). Each plan needs to have its formulary searched, the out of pocket costs uncovered, as well as the monthly premium. Each plan also makes suggestions on how to lower costs, primarily through switching to generics. Each listing also notes that there may be additional hoops that must be jumped through, such as pre-certification, limits on quantity, or step therapy requirements.
What does that mean, I wondered? I mean, I know what pre-cert means, and step therapy - but what does a quantity limit mean? Is that a lifetime limit? Do they perhaps limit the number to 15 pills each month and expect them to be split?
So I called one of the insurers, and guess what - they don't know either! But they will tell you that if you sign up, they'll send you the plan literature so you can find out!

The complexity of the information plus the huge variations in costs was pretty discouraging: the lowest premium was $4.10; the highest $85.02. The total out-of-pocket costs ranged from $4255 to $10,101. The differences seemed to be based primarily on formulary, but the only way I thought I could be really sure would be to print out all 47 formulary and plan details, and do a side by side comparison.

So then I looked at the 19 Advantage plans. This was even more confusing. The comparison of these plans used precisely the same interface: out of pocket expenses ranged from $4440 - $9736, premiums varying from $0 to over $100/month. But some plans had only a health premium, and some had only a medication premium, some had no premium, and some had both. Different formularies here, too.
To compare these was even more difficult - not only would you have to print out the drug benefit details from the Medicare pages, but then to be a truly informed shopper you would have to do a separate search of each plan you were interested in off the CMS site. In other words, there were no details of any of these HMO plans - no lists of providers or hospitals, no definitions or exclusions; not even the information whether they were an HMO, or a PPO, an EPO or some hybrid. And what does PPO III mean? Does that mean the network is bigger or smaller than the PPO I? Is the reimbursement to the physician bigger, smaller, or the same?

The best part, of course, is that all that information on the Medicare site is not guaranteed. It could be correct, but you can't hold the government responsible if it's not. Once you've made your choice you are locked on for a year (except for this year - you can change once), but the Plan can change every week!
CMS is telling us all that this won't happen, and it probably won't. Drug prices are more stable than that. But they could, as my health plan just did, drop your medication from its formulary for no discernable reason, or place your medication under a pre-certification restriction. They can change the premiums and the co-payments. I expect that after a few months most plans will begin to make some adjustments.

Of course, you could also need to add a medication or two not on your formulary when you first signed up, and you'd just be SOL.

I cannot imagine why the the good ol' New York Times headlined its editorial yesterday, A Good but Puzzling Drug Benefit.

Lin
Cross Posted at http://www.signalhealth.com

Catching up: Finding the patient's voice & West Wing as reality tv

2005-11-07T16:06:00.000-05:00

Part I: The Patient's Voice

Sometimes in health advocacy it is very hard to tell the real from the surreal. I just got back from Vancouver and a very interesting conference on "Where is the Patient's Voice in Health Professional Education?" Along with others from the US, Canada, the UK, Australia and other countries I got so excited about the thought that people from all different health disciplines and a wide range of health care systems were thinking about the role of the patient's voice in health professional education that it wasn't until I got home that I really thought about what we were saying: The patient's voice is so "not there" that educators of health professionals--doctors, nurses, occupational therapists, chiropractors and others--have to struggle to incorporate it into professional learning. And, as one presenter said, there are two kinds of changes, at least in medical education--stagnant and glacial.

Health Advocacy is actually built around the patient's voice, so we don't ask this question, but we do feel both pleased and perturbed that finding that voice is such a challenge to health professional education. Our friend and colleague, Meg Gaines from the Center for Patient Partnerships at the University of Wisconsin Law School, would insist on going a step further. She wants to know why the patient's voice is not attached to the service we give the patient, in the educational process. In the CPP model, interested graduate students from any discipline at the University can learn in a classroom cum "advocacy clinic" how to be a health advocate by providing, under supervision, advocacy services to clients in need. Of course clinical health professionals provide service, under supervision, to patients, but it seems like the structure of this education & service connection has tended toward the passive patient model. There are, in fact, complicating power relationships between a clinician and a patient being cared for, so the patient's voice may be structured by the class patient's powerless role. Interestingly, it seemed that most of the models of education that "found" and "inserted" the patient's voice in health professional education relied on community members, former patients, "simulated" or "standardized" patients, not people currently in an active patient status.

Part II: Oral History as the Patient's Voice

The conference I could not attend was in Providence, held by the Oral History Association. Pat Stanley, a student in the Health Advocacy Program who has been doing a lot of work on Narrative Medicine with Rita Charon at Columbia University, and has studied oral history at Sarah Lawrence, delivered my paper since I was in Vancouver. Our panel was, "Bridging the Divide: Oral History, Illness Narratives, and Voices of Advocacy." Pat and Rita have been talking about how oral history can be a tool for eliciting the patient's voice, and a resulting narrative might be helpful to patients, their professional caregivers, and to students. Laurie Rosenblatt at Dana Farber Cancer Center in Boston has done a lot of this kind of work, and uses "creative nonfiction" to craft, together with women patients who have advanced cancer, illness narratives that are used for physician education. There is a lot more to say about oral history and its use in understanding the patient experience, but I only wish I could have put those two conference together, so that when we looked for the patient's voice we could that oral history gives us one way of finding it.

Part III: Would the real Presidential Debate please stand up!

I got home from Vancouver (after 24 hours of hassle on United Airlines) in time to see the para-real tv debate on West Wing last night (11/6). If you missed it, this semi-scripted, live debate between the actors who play the Democratic and Republican candidates for President addressed the issue of health access in the US and coverage of the uninsured--at least on the east coast version. Having agreed at the beginning of the debate to debate without the usual rigid rules of timing, Santos, the Democratic candidate, appears to go off his own platform on health care, which is to gradually increase those eligible for government insurance. He declares that he doesn't like his own plan either, but adopted it because it is the only plan that might get through Congress. The best plan, says Santos, is a simple one: drop the words "over 65" from Medicare, and make Medicare into national health insurance for all. He follows this with a brief and simple argument about how overhead for Medicare is 2% as opposed to the 25% overhead for HMOs. Great plug for national health insurance before a viewership of > 9 million (significantly higher than the usual West Wing viewership.) This, of course, is the basis of proposals advocates of a national health insurance plan have been making for years.

One last note: Read, if you can, Paul Krugman in the New York Times today. Krugman asks how it is that Americans can pay so much for health insurance and, comparatively, get so little. He argues that not only are employees spending more for health insurance, but employer based health insurance is "an institution in decline." Like our imaginary Democratic presidential candidate, Krugman argues that a public solution would provide better coverage for less money and without sacrificing quality of care:

The funny thing is that the solution - national health insurance, available to everyone - is obvious. But to see the obvious we'll have to overcome pride - the unwarranted belief that America has nothing to learn from other countries - and prejudice - the equally unwarranted belief, driven by ideology, that private insurance is more efficient than public insurance.
. . . Why does American medicine cost so much yet achieve so little? Unlike other advanced countries, we treat access to health care as a privilege rather than a right. And this attitude turns out to be inefficient as well as cruel. The U.S. system is much more bureaucratic, with much higher administrative costs, than those of other countries, because private insurers and other players work hard at trying not to pay for medical care. And our fragmented system is unable to bargain with drug companies and other suppliers for lower prices.
. . . The economic and moral case for health care reform in America, reform that would make us less different from other advanced countries, is overwhelming. One of these days we'll realize that our semiprivatized system isn't just unfair, it's far less efficient than a straightforward system of guaranteed health insurance.

But I guess we prefer our reality on tv drama shows, which allows us to continue to live in the unreality of a health care system in which we pay more for less in order to support [fill in the blank].

Who decides? Women, doctors, pharmacists, corporations?

2005-10-27T15:06:00.000-04:00

Planned Parenthood's site, saveroe.com, has posted information about which pharmacies women can go to knowing that their prescriptions for contraceptive pills will be filled. The image below is static, but go to the saveroe.com site for an interactive look at the policies of major pharmacy chains.

You may want to connect the information about Wal-Mart posted here with Wal-Mart's recently outted memo on providing (or not) health insurance for workers. According to CNN,

A Wal-Mart vice president has suggested to the company's board of directors that it could hold down spending on health care and benefits by hiring more part-time workers and encouraging "healthier, more productive employees," according to an internal memo obtained by CNN.

Wal-Mart has 1.3 million employees in its US stores. I assume they may not be able to get their contraceptive prescriptions filled either.

Medical bills--devastating and destructive, with or without insurance

2005-10-24T14:55:00.000-04:00

The next time you find yourself thinking that your employer-based health insurance is going to save you from ruin if a tragic illness strikes you or your family, think again. Part VI in the New York Times’ series about "Being a Patient" in American debunks that notion that health insurance is necessarily insurance against medically caused bankruptcy (which, in itself, has become harder for middle class Americans to declare).
“When Health Insurance is Not a Safeguard” is, like the rest of the series, well worth reading.

And for a disturbing supplement to this article, I am linking you to Health Advocacy graduate Lin Osborn’s blog on her client who had no health insurance, and was therefore billed “retail” for what insurance providers—public and private—get at a discount. Lin's health insurance advocacy service, Health Plan Navigator, was mentioned in “Treated for Illness, Then Lost in Labyrinth of Bills.” Read her piece on “Making a Hospital Squirm.”

Caregivers

2005-10-20T16:31:00.000-04:00

Monday evening (October 17), in the living room of Slonim House--the old tutor house that is home to graduate studies at Sarah Lawrence College and to the Health Advocacy Program--we gathered to listen, to share and to explore the experience of caregiving. The focus of this first seminar was on caregiving for a person of another generation--a parent or a child.

There is a lot more I want to say about that evening and about the caregiving project that is a collaboration of ethics (Alice Herb is our lawyer/ethicist) and theatre (Shirley Kaplan is our dramatist), but for how, let me just introduce the seminar's participants.

Margot Benton is a student in the Center for Continuing Education at Sarah Lawrence College and is a caregiver for her now adult daughter who has special health care needs.

Abbey Berg is an audiologist who teaches in the Department of Communications Studies at Pace University and directs the newborn hearing screening program at New York Presbyterian Hospital—Columbia Campus. She is caregiver for her great aunt Lillian.

Margery Franklin is the director of the Sarah Lawrence Child Development Institute and was caregiver for her mother.

Mary Ellen Geist left her job as anchor for WCBS radio to help take care of her father who was diagnosed with Alzheimer’s. She chronicles her role as caregiver on her web site, “Living, Loving & Letting Go: A Daughter’s Journey."

Gladys González-Ramos is an Associate Professor of Social Work at New York University School of Social Work. She has published a chapter, “The Courage of Caring,” about her experience as caregiver for her parents in Levine’s book.

Jane Gross is a reporter for the New York Times and author of many articles about older people, including a recent article about being “Alone in Illness,” and earlier articles about her mother’s experience with illness and death. Jane read from one of those articles, “The Quest for a Peaceful Death,” (August 6, 2003) about her mother’s effort to be allowed to die in a nursing home.

Maggie Hoffman is co-founder of Project DOCC (Delivery of Chronic Care), which works to improve the quality of care for severely chronically ill children by educating pediatricians-in-training about their special needs from a parent's perspective.

Carol Levine directs directs the Families and Health Care Project at the United Hospital Fund and is recognized as one of the nation’s experts on caregiving She is author of two books on caregiving, Always on Call and The Cultures of Caregiving, and is caregiver for her husband, who was severely disabled in an automobile accident. Carol was one of the planners of the seminar and helped lead the discussion.

Maggie Ornstein is a young adult caregiver for her mother, a role she took on before finishing high school.

Mary Tierney is a graduate of the Health Advocacy Program and an independent geriatric care manager. Mary was caregiver for her father who had Alzheimers.

Connie Zuckerman is an attorney and bioethicist, who teaches and consults in bioethics and particularly end-of-life issues. As a young adult, she was a caregiver for her grandparents. Connie is a contributing author in Levine’s book, Always on Call: When Illness Turns Families into Caregivers.

The evening’s discussion was filmed with plans to craft versions of this and subsequent seminars that can be used for education and outreach to support caregivers.

Navigating your way out of the “labyrinth” of medical bills

2005-10-13T13:26:00.000-04:00

Lin Osborn is a graduate of the Health Advocacy Program whose passion and profession is helping people “navigate” their way around the health insurance system. Today, Part IV in the New York Times’ series, “Being a Patient,” included the following story about a family facing an extremely serious illness of their two year old—and a morass of medical bills that made no sense. Reporter Katie Hafner, tells the story this way:

In late 2003, Bonnie MacKellar's son Elias, then nearly 2, stopped eating. Then he stopped talking and walking. Elias had stage IV neuroblastoma, a highly malignant tumor of the nervous system.

Though pushed to their emotional limits, Ms. MacKellar and her husband, Thomas Dube, refused to buckle until the bills started to appear in the mail each day: hospital bills amounting to tens of thousands of dollars; invoices from doctors she did not remember meeting; E.O.B.'s from her insurance company that explained nothing.

"It is hard to describe what it is like to be confronted with mounds of scary claims and bills when you have a 2-year-old who is extremely ill, who needs constant nursing and doesn't have a great chance of surviving," Ms. MacKellar said. "And to sit in a hospital room, on hold with the insurance company for 30 minutes or more only to have your child start puking just as you get a rep on the line."

The E.O.B.'s seemed to serve little purpose beyond engendering fear. They were detailed enough ("radiology services 2/19/04"), but when it came to understanding the boxes listing the amounts charged, the amounts not covered, the fees allowed, the available benefit and the remark code (IT, 29, and the ever-mysterious QN ), Ms. MacKellar and her husband were at a loss.

One statement that said, "Plan pays $00.00, patient pays $56,750.00," caused panic. The remark code "07" stated, "These charges are for services provided after this patient's coverage was canceled."

There had been no cancellation of coverage, but convincing the insurance company of that fact was an ordeal.

The breaking point came when the group number on the health plan changed, and Ms. MacKellar was unable to convince the insurance company that it was billing under the wrong number.

In despair, she consulted a social services agency, which put her in touch with Lin Osborn, a private consultant fluent in the arcane language of health care billing. For a fee, Ms. MacKellar was told, Ms. Osborn could take all the paperwork off her hands.

An expert in deciphering insurance and hospital billing codes, Ms. Osborn spent several days straight working on the case and took care of the entire mess, Ms. MacKellar said.

We are glad that Lin founded Health Plan Navigator to advocate for people facing these problems; but Lin would be the first to say that we need to address the reasons why people who are coping with sickness also have to be coping with billing and insurance harassment. Frankly, it is hard to imagine anyone who has gone through this not thinking that a single payer national health insurance plan has to be a better way. It is hard to resist concluding with the question of why “close to 30 cents of every dollar spent on health care goes for administration, much of it spent generating bills and explanations of benefits.” (Basic Medicare--our single payer national health insurance for the elderly--by comparison, spends around 3 cents on the dollar for administration.) Hafner suggests that this 30 cents “keeps the system churning.” I think we need to ask who benefits from this churning. Surely not the patient.

Think Before You Pink

2005-10-06T18:15:00.000-04:00

The other day I spoke to reporter Nichole Aksamit of the Omaha World-Herald. Aksamit was researching an article on whether disease awareness days, fund-raising events, ribbons, bracelets and teddy bears worn and sold to raise money for research haven’t become “Too Much of a Good Thing.” For example, twenty one conditions, diseases, health professions, treatments, body organs celebrate celebrate October as their particular awareness month, not to speak of the briefer celebrations of awareness weeks or days. (Today, October 6 is National Depression Screening Day.)

Aksamit asks a gutsy question, particularly in October--Breast Cancer Awareness Month. Coincidentally or not, The Journal of the National Cancer Institute reported this week that while breast cancer mortality rates have declined, incidence of this disease has increased. It is troubling to think that the focus on breast cancer awareness has conceivably and perversely increased acceptance of the prevalence of this disease among women. The focus of most advocacy around breast cancer awareness has been on early detection, screening and treatment—not on prevention. Increasing mammography screening rates does not prevent breast cancer. It may in fact lead us to a false equanimity, a temptation to equate early detection with cure. As more environmentally focused breast cancer advocacy groups tell us, however, “prevention is the cure.”

It was a mammogram that lead Barbara Ehrenreich into the world of pink ribbons and teddy bears that inspired her 2001 critique ““Welcome to Cancerland.”. Ehrenreich uses her personal experience as a woman with breast cancer to explore the “ultrafeminine theme of the breast-cancer ‘marketplace’” and the infantilizing trope that accompanies this theme. (“Certainly men diagnosed with prostate cancer do not receive gifts of Matchbox cars.”) The difficult questions that we need to ask, though, are questions about the relationship between the commercialization of disease awareness and the growth of the multi-billion dollar industries that profit from the prevalence of breast cancer. AstraZeneca, manufacturer of tamoxifen, for example, was a founder and is a funder of Breast Cancer Awareness Month. According to Ehrenreich, until a corporate reorganization in 2000, AstraZeneca was a leading producer of pesticides, including acetochlor, classified by the EPA as a ‘probable human carcinogen.’” “Women,” says Ehrenreich, become the “unwitting allies of the very people who make them sick.” Corporations produce environmental toxins that contribute to high cancer morbidity, promote the “awareness” that leads to more cancer screening, and then market the treatments for the disease. No wonder infantilizing women makes sense. Kind of like keeping them barefoot and pregnant.

So, what can you do this October when the breast cancer fundraisers beckon? Breast Cancer Action has one answer: "Think Before You Pink." This is a great web site with an important advocacy message. Explore the information on some of the “cause-related marketing campaigns.” And by all means browse through the amazing “Parade of Pink: Products for the cause.” But most important, consider the questions BCA suggests you ask before you put your money on a product that promises a contribution:

How much money actually goes toward breast cancer programs and services?
Who gets the money?
What types of programs are being supported?
How are the funds being raised?

More Pink . . . .

The challenge to the “pinking” phenomenon seems to be spreading. Check out Natasha Singer’s article, “"Perplexing in Pink", in the October 6 New York Times. Singer takes a look at the product sales marketed as a way to raise money for breast cancer. Even when consumers ostensibly are informed about how much of the “net profits,” for example, goes to cancer research, the language in reality divulges little:

"What do net profits or proceeds mean?" asked Lynn Dornblaser, the director of custom solutions at Mintel International, a market research firm that tracks cosmetics products. "How do I know the net profits from each jar aren't going to be a nickel? It's absolutely confusing to consumers."

Dr. Susan Love, a breast cancer expert and the author of Dr. Susan Love's Breast Book, called the pink ribbon a "double-edged sword. . . . Forty-thousand women are still dying each year from breast cancer, but people think if they just run, walk and buy pink things, the problem will be solved." Nevertheless, the pink market is too tempting for even Love to resist. She caved in when it came to raising money for her own foundation, and sells pink bracelets to support her research. She does recommend that consumers ask the kind of questions “Think before you pink” recommends.

The Susan G. Komen Breast Cancer Foundation also recommends asking questions:

Does the brand have a history of commitment to the cause it is promoting?
How much of what the consumer spends will go to charity?
How reputable is the charity?
What does the charity spend the money on?
And how meaningful to the consumer is the charity's agenda?

Maybe we should give CMEs or CLEs or some kind of life experience credit for this conscientious consuming: To buy a pair of tweezers, responsible consumerism now requires not only comparing prices (quality, forget it, since they come in plastic covered packaging), but making major decisions about how much of my payment goes to which charity, for what kind of research, not to speak of assessing the true motivation of the tweezers manufacturer. Let’s bring back writing checks.

While refreshing the Red Sox scores . . . .

2005-09-29T22:30:00.000-04:00

I’m a Red Sox fan living in New York City with a Yankees fan spouse. This means that these days/evenings I spend a lot of time hitting the F5 refresh button on the computer to update the log of the game. So the Sox just tied the score against Toronto, 4-4 going into the 9th. It’s hard to focus on work during a close game at this time of year with the Red Sox and Yankees going into their final weekend, a deciding series in Fenway Park.

All this is preface to how I started checking out some of the medical blogs between "refreshes" and came to “Grand Rounds #53,” a posting on Family Medicine Notes. Check it out for a review of a selection of doctor blogs, some new and some not so new. Jacob Reider (MD) says he has been writing Family Medicine Notes since 1999, and considered 50 doc blogs before selecting about half to briefly (very) review. Anyway, I don’t have time now to check out all these blogs, but it looks like a good list to explore—if the Red Sox stay in the race and I am still hitting F5 after this weekend.

“a place none of us know until we reach it”

2005-09-29T21:31:00.000-04:00

Susan Sontag wrote,

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.

Sontag went to that “other place” when she was first diagnosed with breast cancer in 1977 and she wrote about it in her now classic essay, “Illness as Metaphor.” She returned to that kingdom of the sick in 1998 and before she died in December 2004.

In last weekend’s New York Times Magazine, Joan Didion shared with readers a selection from her forthcoming book, The Year of Magical Thinking in which she describes her entrance into the kingdom of grief.

Grief, Didion tells us, is different from the sadness she felt when each of her elderly parents died.

What I felt in each instance was sadness, loneliness (the loneliness of the abandoned child of whatever age), regret for time gone by, for things unsaid, for my inability to share or even in any real way to acknowledge, at the end, the pain and helplessness and physical humiliation they each endured. I understood the inevitability of each of their deaths. I had been expecting (fearing, dreading, anticipating) those deaths all my life. They remained, when they did occur, distanced, at a remove from the ongoing dailiness of my life.

There is no distance from grief, from the immediacy of a partner’s sudden death.

Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life. . . . [Grief is] a place none of us know until we reach it.

Didion’s book is reviewed in January Magazine by our Health Advocacy Program assistant, Emily Macel, a student in the graduate writing program at Sarah Lawrence. Emily contextualizes this memoir within illness narrative writing, and describes its impact on the reader, drawn into the “vortex” by Didion’s compelling prose.

Weeds break through the surface

2005-09-25T22:09:00.000-04:00

As a strange follow-up to my blog of September 16 about the resignation of Dr. Susan F. Wood as the director of the FDA's Office of Women's Health, Lester M. Crawford, FDA Commissioner resigned suddenly on Friday (although this news is not posted on the FDA website as of today, Saturday, September 24, 2005). Apparently this resignation, only two months after his confirmation, had nothing to do with the Plan B stonewalling, which, after all, was what the administration wanted, and everything to do with financial improprieties Crawford had not disclosed to the Senate during his confirmation hearings. The FDA has been severely criticized in recent years for putting politics before science, and for shielding drug companies by withholding information from the public.

FYI, the postponement of the emergency contraception decision was the subject of a recent New England Journal of Medicine commentary, "A Sad Day for Science at the F.D.A."

Meanwhile, as a sequel to drug companies influencing physician prescription practices, we have this week a report by Reed Abelson of the New York Times on device manufacturers who have consulting contracts with doctors who use their products. (See related editorial in the Saturday, September 24, New York Times and report by CNN News.) So now that there is public disclosure, by the media, if not by medicine, of the ways many doctors are influenced to make treatment decisions based on their financial interest instead of on the best interest of the patient, what are patients to do? The Times editorial suggests that full disclosure by doctors to their patients would be a good start, “That would alert patients and institutions to look hard at whether the devices recommended by a doctor-consultant were really the best to use.” But realistically, should patients be expected to do their own research (even if sources were available), on which drugs or devices are best? Surely we can agree that professional ethics requires not only disclosure, but complete separation of practice decisions about drugs and devices from financial self-interest.

For a really good review of evidence and issues related to physician ties with pharma, read this piece by Jerome Kassirer, former editor-in-chief of the New England Journal of Medicine. (“Physicians' Ties With The Pharmaceutical Industry: A Critical Element Of A Wildly Successful Marketing Network,”) Kassirer hits hardest at the medical elite, those academic physicians who should be professional leaders, who should set ethical standards, who are the educators of the next generations of physicians.

[W]e should not lose sight of the fact that patients do not order the industry’s products, physicians do. And physicians represent the audience for the pharmaceutical industry’s marketing efforts. The physician network that the pharmaceutical industry has engaged in these marketing efforts is truly impressive. With minor exceptions, most of academic medicine seems to be involved in one way or another in industry’s marketing efforts: carrying out research that shed a good light on a drug, testifying about a drug’s good qualities, writing papers and pamphlets and developing clinical practice guidelines and registries that that promote products, working behind the scenes to help avoid litigation. And all the time, in the pay of industry. It is an impressive network of people who have been assembled either intentionally or inadvertently by industry to do its bidding. Because the doctors order the drugs, the companies depend on their passive acquiescence or active participation in their marketing efforts. Many physicians are not just being compliant, but also complicit.

Kassirer ends with this admonition: “'Conflicts of interest are institutional weeds. They take root below the surface and become pervasive problems often long before they show their ugliness.'” Unfortunately, the weeds have long since broken through the surface."

"The Constant Gardner"

2005-09-19T14:35:00.000-04:00

A few weeks ago the Alliance for Human Research Protection posted two rave reviews of the movie, “The Constant Gardner,” one from The New Republic and the other from The Chicago Tribune. And I went to see it. The movie proved just as compelling as the reviews promised, particularly its focus on the collusion of government and pharma in testing, without consent, and, indeed with coercion, new products on poor African populations. It is a beautifully filmed and exceptionally well acted movie. I immediately told my students and colleagues in the Health Advocacy Program to go.

This week the New York Review of Books includes a review of John le Carré’s book as well as the movie by Marcia Angell, former editor of the New England Journal of Medicine, Senior Lecturer in Social Medicine at Harvard Medical School and author of The Truth About the Drug Companies: How They Deceive Us and What to Do About It, an exceptionally clear and well researched book about pharmaceutical companies and the public.

Read this excellent review for yourself. Angell, who knows a great deal about drug company activities, confirms le Carré’s author’s note at the end of the book, "As my journey through the pharmaceutical jungle progressed, I came to realize that, by comparison with reality, my story was as tame as a holiday postcard."

According to Angell, the real fiction in the story is that drug companies would actually be threatened by knowledge of its unethical drug trials becoming public. “In fact, many of the practices that so horrified le Carré's heroine are fairly standard and generally well known and accepted,” writes Angell. “They seldom provoke outrage, let alone murder.”

Advocates and ethicists should pay particular attention to Angell’s review:

This system makes a mockery of the notion of informed consent—the requirement that subjects be given full information about the nature of the research and have the right to refuse to participate, without penalty or consequences for their usual health care. That requirement is enforced in the US and other well-to-do countries, and partly for that reason, drug companies are having a hard time getting enough volunteers for the growing number of clinical trials. Not so in the third world, where authoritarian regimes and corrupt local government officials and health authorities are eager to be paid off by first-world organizations and to have good relations with them. They "encourage" entire villages or provinces to enroll in research programs, while local doctors enrich themselves by providing human subjects.

Perhaps the most important reason for conducting human research in Africa and other poor regions outside the US is that it is a way of circumventing FDA regulations. . . .

Before a study is exported to the third world, two important questions should be asked. First, would it be possible to do the research in the first world? And second, why is it being diverted to poor countries? It is sometimes claimed that research should be done where health needs are greatest—and that is certainly the case in the third world. But this view confuses research with treatment. There is a great need to apply the results of research, wherever it is conducted, to the treatment of people in the third world. Unfortunately, that is not what happens. Research findings are applied predominantly in well-to-do countries even when the research is done in poor ones. The only clinical research that clearly needs to be conducted in the third world is research on third-world diseases. Such work is amply justified, and far more of it is needed. Unfortunately, it is not a high priority either for the pharmaceutical industry or the National Institutes of Health.

While we are on the subject of emergencies . . .

2005-09-16T17:59:00.000-04:00

Harvard’s World Health News arrived by email yesterday (9-15-05) with an article about how the health ministry in India has made emergency contraceptive pills available to women in India without a prescription. According to The Times of India (September 9, 2005), Health Minister Ramadoss noted that “More than 100 countries have made ECPs an OTC drug. China is making it available through vending machines. This is our way to help empower women in India.'"

This caused me to refocus on the fact that American women have been once again denied such empowerment. And I am not alone. As Amy Goodman says today in the Boston Globe,

NOW that we have waved "Bye, Bye, Brownie" to Michael Brown, the hapless head of FEMA, could we turn our sights back to another agency on the skids: the Food and Drug Administration? If FEMA is an example of a government run on cronyism, the FDA has become a portrait of a government run on ideology. After its blunders over Vioxx and defective heart devices, it has now deliberately tanked the homeland emergency contraceptives.

On August 26 the FDA deferred ruling on over-the-counter sales of Barr Pharmaceuticals Inc.'s "morning-after" contraceptive on the grounds that approving the contraceptive for women over 17 would risk enabling girls under 17 access the contraceptive. When FDA denied approval in 2004 it was because of objections related to access by young teens.

Meanwhile Republican politicians are scoring points with the national Republican party and conservative voters by vetoing emergency contraception legislation with wide state support. In July Governor Mitt Romney (MA) vetoed state legislation to expand access to emergency contraception. This week the Massachusetts Senate overrode his veto 37-0. The House had already overridden the veto 139-16. In his 2002 campaign, Romney said he supported wider access to emergency contraception. I guess things change the closer he gets to thinking about national office. (New York Times, September 16, 2005)

In early August, Pataki did the same thing in New York State, vetoing the emergency contraception bill on the grounds that it would allow minors access to contraception without seeing a doctor.

Democracy Now notes that vetoing emergency contraception legislation is a trend among presidential hopefuls.

Meanwhile, overshadowed by Katrina and the recognition, finally, by millions of Americans that this administration will not—cannot—keep them safe from disaster of any kind, was the rare principled action of Susan Woods, Director of FDA’s Office of Women’s Health, who resigned over the FDA decision to delay yet again approval of Plan B emergency contraceptive. A group of women’s health advocacy organizations wrote this powerful statement in response to Woods’ resignation.

August 31, 2005

Washington, DC - The national effort to improve the health of women suffered a serious blow today with the resignation of Dr. Susan F. Wood as the director of the FDA's Office of Women's Health. Dr. Wood resigned in protest over the agency's handling of Plan B. She announced her resignation earlier today.

The women's health community applauds Dr. Wood for her personal commitment to the FDA's mission of making science-based decisions to improve the health of the public and we are very sorry to lose her. Dr. Wood was one of the champions of a decade-long effort to improve women's health through increased federal research and support.

Dr. Wood's impact on women's health was felt in many ways during her nearly 5 years at the FDA. She led the agency's effort to ensure that women were included in trials of new drugs and medical devices, and put into place reporting and recordkeeping systems that enabled researchers to quickly determine whether women were affected differently than men by specific products.

Dr. Wood was also a key player in the FDA's efforts to increase our shared knowledge about the effects of medications used in pregnancy on the health of the fetus and the pregnant woman.

Dr. Wood also demonstrated her leadership in women's health by creating new programs to communicate important health information to average women, such as the FDA's Take Time to Care campaign. She was awarded the Commissioner's Certificate of Excellence for her work on the agency's education campaign on menopause hormone therapy.

Dr. Wood encouraged dialogue with the FDA on a broad range of women's health issues, from many avenues. She welcomed input from consumers as well as industry, health professionals and biomedical researchers.

The resignation of Dr. Wood is just one example of the damaging implications of the FDA's willingness to ignore clear scientific evidence and clear scientific shortcomings in their approval decisions for prescription drugs, medical devices, and other medical products. American women will be harmed directly by FDA's inappropriate decisions, as well as indirectly harmed when outstanding public servants decide to resign from this ailing agency.

Lorraine Cole, President
Black Women's Health Imperative
(202) 548-4000

Barbara Brenner, Executive Director
Breast Cancer Action
(415) 243-9301

Cindy Pearson, Executive Director
National Women's Health Network
(202) 347-1140

Judy Norsigian, Executive Director
Our Bodies, Ourselves
(617) 233-0062

Diana Zuckerman, President
National Research Center for Women &
Families
(202) 223-4000

The Human Connection and the Government Disconnnect

2005-09-13T16:10:00.000-04:00

According to Alan Manevitz, a psychiatrist at NewYork-Presbyterian/Weill Cornell hospital and an expert on post-traumatic stress disorder, during the aftermath of disaster, a doctor’s role evolves: "At first, you act like just a fellow human being," he said. "Then as a physician." Manevitz was at Ground Zero after the World Trade Center attacks and he is now in in Gulfport Mississippi at the Health Department Command Center (New York Times, September 11, 2005) .

Last night I was given a copy of On the Ground After September 11, a collection of accounts by people in the mental health field who responded to the September 11, 2001 crisis. About 65 authors have contributed their stories, their responses and their own emotional reactions to bring us as readers into the web of connectedness that characterizes the response to 9/11. The book has over 100 chapters, and is more than 600 pages long, so I have barely dipped into its contents, but already I am engaged, mainly because the mental health workers tell their stories as connected people. First they are human beings. Their humanness connects them to the people they help, and to each other. And then they are able to provide service. I have two running partners who have contributed to this book, Ellen Stoller and Louise Klaber. Look for their stories.

Obviously and sadly the release of this book is timely. Yesterday a Health Advocacy student sent me a link to Adele Stan’s blog. Stan posted an article written by an anonymous and very experienced psychologist who volunteered her services in Dallas at the Convention Center and Reunion Arena. She is angry and frustrated by the lack of coordination, of official response, of real help. “No one is in charge, she shouts.” And then she makes the link between 9/11 and Katrina we are all afraid to think about:

The government has failed!!! We are more vulnerable now than before 9/11 because faith in the system is gone. No system can sustain itself as a viable entity when the citizenry are the walking wounded. Victims implode a system from within and expose its decay. This is the beginning of the end unless we can get a drastic change of philosophy and restore the government to a system "by the people for the people." Right now nobody down here believes we have that.

Yes, “Shame.” Now let’s face it.

2005-09-07T14:06:00.000-04:00

Yesterday (September 6) Nicholas Kristof in the New York Times pointed out “The Larger Shame” that Katrina has exposed, “the children and families trapped in a never-ending cyclone of poverty.“ He sites the recently released report by the U.S. Census Bureau,"Income, Poverty and Health Insurance Coverage in the United States, 2004” (US Census Bureau) reporting that the official poverty rate in the US actually rose last year (from 12.5 percent in 2003 to 12.7 percent in 2004). Accompanying that rise was an increase in the number without health insurance, now 45.8 million people (15.7 percent). It is a horrible irony of a tragedy like Katrina that, as Kristof says, “in some ways the poor children evacuated from New Orleans are the lucky ones because they may now get checkups and vaccinations.”

Infant mortality rates are often used as a shorthand to get a sense of how well a country is doing providing basic health care to its population. “Under Mr. Bush, the national infant mortality rate has risen for the first time since 1958. The U.S. ranks 43rd in the world in infant mortality, according to the C.I.A.'s World Factbook; if we could reach the level of Singapore, ranked No. 1, we would save 18,900 children's lives each year,” writes Kristof. In January 2002 when a group of Health Advocacy students, alums and faculty went to Cuba to learn about the Cuban health care system , the official Cuban press headlined the fact that the infant mortality rate in Cuba was lower than in the US.

It seems as if we have been inured to such facts. Our shame should be deep. Let’s hope this time it leads to action.

Shame

2005-09-05T18:11:00.000-04:00

Shock, sadness and shame are some of the emotions we have experienced this past week as we have witnessed the suffering and chaos caused by Hurricane Katrina.

This is an excellent piece by David Brooks, who wonders if Katrina will provoke a bursting point of anger and dissatisfaction with our current political culture.

Europeans are appalled by the disaster: "At the same time, however, the particular circumstances of New Orleans and Biloxi, Miss., have tended to confirm the worst image of America that prevails in Europe, the vision of a country of staggering inequalities, indifference to the general welfare (especially during the Bush administration), and lacking in what Europeans call 'solidarity.'"

Shame on us.

Our hearts go out to the victims of Katrina.

Information is Power

2005-08-26T14:05:00.000-04:00

Information is power. This fact is slowly dawning on physicians, as patients are given more health care quality information, increasingly shifting decision-making power to the consumer. This is no longer your grandfather’s health care world, where physicians were all-powerful patriarchs, operating in a mysterious and untouchable ivory tower, where medical knowledge, outcomes and treatment decisions were completely in their hands.

Any consumer can now, with a click of a mouse, see how well hospitals in the US deliver appropriate care for three life-threatening conditions. By measuring these medical markers and publicizing the report cards, physicians are facing a new day. There’s no arguing with numbers.
Hospitals and physicians are now paying attention. Let’s keep chipping away at that ivory tower and shining a light into all of its dark and musty corners. Patients now have one more tool to help them make informed medical choices.

Naomi Cohen

2005-08-26T04:59:00.000-04:00

A group of friends gathered at my house last night to have a party. The theme was “Death”, and what to do about it. Not your run of the mill party topic, granted, but an important one that is worth delving into.

After an awkward start, one friend spoke about her family’s anguish when her mother was rushed to the ER at the end of her painful battle with cancer. A decision had to be made about intubation. My friend’s orthodox Jewish brother needed to consult with his rabbi, while the rest of the family reluctantly agreed that the best thing was to let their dear mother/wife die.

According to the New York Times, most people would rather avoid the topic altogether, and trust that their loved ones will make the right decisions about treatment choices at the end of life.

These are conversations we need to be having with our loved ones.

The trouble is, most of us aren’t talking. The silence is another example of our ambivalence about death, our unwillingness to look it straight in the face...”

Death is a taboo subject in the US, since we all believe we’re going to live forever, thanks to miraculous medical technology. But do we really want to end up hooked up to machines that keep our bodies alive, while our loved ones agonize at our bedside?

Since I don’t want some young ER doctor making those types of decisions for me, at the party, I signed a New York State Health Care Proxy , as did most of my friends, mutually-facilitating the process by witnessing each other’s signatures. We talked about the limited nature of living wills, and why a Health Care Proxy is so much more flexible.

Death is never a pretty thing, but at least I can be in charge of making crucial decisions about my care. My health care agent knows my wishes, and hopefully, will have the courage to carry them out.

Naomi Cohen