In 2007, the American Journal of Nursing published a cover photo of a weeping 4-year-old boy, his hands and face pressing on the inside of a car window. At the time, I was editor in chief of the journal and had asked photojournalist Ed Kashi and his wife, the writer Julie Winokur, to highlight the plight of the uninsured. They did so with the story of Texan Sheila Wessenberg, mother of the boy, Alex, who was autistic.1
Sheila was diagnosed with breast cancer in 2001 but had to forgo follow-up treatment when her husband, Bob, lost his job, along with the family’s health care coverage and their middle-class life. She panhandled on weekends—“I am not a bum. I’m a mom. Please help,” read the sign on her coffee can—and worked at low-paying jobs that didn’t provide health insurance or wouldn’t cover her “pre-existing condition.” She couldn’t afford child care, so she left Alex inside her car, parked where she could see it from her office window. Kashi’s image starkly captures Alex’s devastation and leaves viewers to imagine what it might be like to be forced into such circumstances.
Winokur described Sheila, who died in 2005 at the age of 46 years, as “‘collateral damage’ in a nation that refuses to overhaul its health care system.”
Last week, I thought of Sheila and how far health care has come under President Obama. US Department of Health and Human Services Secretary Kathleen Sebelius announced that, as of August 1, “non-grandfathered” insurance plans would be required to provide women with 8 preventive health services recommended by the Institute of Medicine in its report Clinical Preventive Services for Women. (“Grandfathered” insurance plans are those that were in place before September 23, 2010, when the Affordable Care Act [ACA] rules took effect, and that applied for exemption from new requirements.) More than 47 million women should now be eligible for the following services without cost-sharing (deductibles or co-payments):
- Well-woman visits
- Gestational diabetes screening for pregnant women
- Interpersonal violence screening and counseling
- Food and Drug Administration–approved contraception, as well as education and counseling (group health plans provided by some religious employers are exempt)
- Breastfeeding support, supplies, and counseling
- Human papillomavirus DNA testing for women 30 years of age or older
- Sexually transmitted infections counseling for sexually active women
- HIV screening and counseling for sexually active women
The ACA already required new non-grandfathered health plans to provide mammograms, cervical cancer screening, prenatal care, and other preventive services without cost-sharing.
Cost-sharing is a significant barrier to accessing care. Women who are uninsured or insured with cost-sharing are less likely to have mammograms and more likely to experience delays between diagnosis and treatment and to stop treatment early. So just these features of the ACA—increasing access to insurance coverage and eliminating cost-sharing for essential services—could significantly improve women’s health nationwide.
The ACA might have saved Sheila Wessenberg’s life.
Yet the struggle to improve access to care continues. The day before these new 8 benefits kicked in, Senate Minority Leader Mitch McConnell (R, Ky) called for the repeal of “Obamacare.” Certainly, some women agree with Senator McConnell’s aim. Some speculation suggests that Republican Presidential candidate Mitt Romney may choose as his running mate a first-term US Senator from New Hampshire, Kelly Ayotte (R, NH), who is on record as supporting the repeal of the ACA.
But on August 1, a Quinnipiac University/CBS News/New York Times Swing State Poll showed President Obama leading Mitt Romney among likely voters in 3 key states—Florida, Ohio, and Pennsylvania—and women account for much of this lead. Also, women were more likely than men to rank health care as an important issue that will shape how they vote. This is consistent with a poll conducted in 12 swing states by USA Today in March, in which women ranked health care No. 1 in influencing their presidential vote. Men ranked health care No. 3, after the national debt and deficit spending.
Why is health care a more important political issue for women?
Compared with men, women bear a greater burden in trying to access health care, including preventive services. According to a 2009 report by the Commonwealth Fund, about the same proportion of women and men are uninsured, but women “are more likely to forgo needed care because of cost and to have problems paying their medical bills, accrue medical debt, or both.” Women may defer their own care to support their family, and their health care costs tend to be higher than men’s and account for a higher proportion of their income (men still outrank women in average income).
Julie Winokur’s 12-minute video Denied chronicles the Wessenbergs’ story. No woman should have to choose, as Sheila did, between her health and her home. As Bob Wessenberg says of the tragedy of his wife’s refusal to sell their house to pay for health care:
She fought for this house. Technically, she died for this house. The kids get Social Security death benefits now, and I don’t understand that. To wait until the mother is dead? Why couldn’t Sheila get benefits? I didn’t have to sell anything for Social Security. It was just there. And that’s the way health care should be.
1. Winokur J, Kashi E. A losing battle: America’s broken health care system cost one woman her life. Amer J Nurs. 2007;107(1):44-45.
About the author: Diana J. Mason, PhD, RN, is the Rudin Professor of Nursing and Co-Director of the Center for Health, Media, and Policy at the Hunter College, City University of New York, and Fellow and President-elect of the American Academy of Nursing.
About The JAMA Forum: To provide ongoing coverage throughout this election year, JAMA has assembled a team of leading scholars, including health economists, health policy experts, and legal scholars, to provide insight about the political aspects of health care. Each JAMA Forum entry expresses the opinions of the author but does not necessarily reflect the views or opinions of JAMA, the editorial staff, or the American Medical Association. More information is available here and here.
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