Who decides? Women, doctors, pharmacists, corporations?

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

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

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

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

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.