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Category: Politics, Health

Chronic Illness and Health Care Reform: I’m Too Tired to Fight This By Myself

| October 23, 2009

Health care reform, crucial to all of us, is especially important to the chronically ill, who need coverage of “maintenance medicine”—everyday care that can be guaranteed in a national system. The author is doing all she can, but she needs some help.

Health care reform legislation is quickly taking its final shape as I write this. So fast, in fact, I don’t dare cite any of the combinations of bills being discussed—they could become outdated before this piece goes live. As the debate continues and each day passes, and the bills become more muddied and watered down, my stomach clenches at the possibilities.

I’m a self-employed woman, enjoying the benefits of her spouse’s employer-provided health insurance—and worrying every day that we’ll lose our coverage. I’m in good company: according to the Kaiser Family Foundation, “women with employer-based insurance are almost twice as likely as men to be covered as dependents”—which means I’m at higher risk for losing that coverage in a variety of scenarios.

I also live with multiple chronic illnesses—including the ever-exhausting, always-painful fibromyalgia—taking fistfuls of medication every day and visiting a health care provider at least once a week. Again, I’m in good company: “Nearly half of Americans suffer from one of more chronic diseases,” according to the Partnership to Fight Chronic Disease, and “75 percent of every dollar spent on health care in the U.S. is for treatment of patients with one or more chronic conditions.”

Before you complain that I should be happy for any coverage at all, let me tell you I am grateful. As frustrating as my insurance company can be, I am able to get the care I need.

Still, I have to fight for nearly every penny they spend for my care, and again I’m lucky: I’m well educated, confident, and have access to people and other resources that help me argue my case. It pains me to think about the millions of people who blindly accept their insurance company’s rejection letters and pay out-of-pocket unnecessarily.

And then I think about people with chronic illnesses much more serious than mine, people who can barely get out of bed each day, whose energy is tapped by completing the most basic daily tasks. How do they find the resources to fight with insurance companies when they’re turned down for essential treatment? Who’s looking out for them?

Without diving too far into specifics, most of the proposed bills include a focus on preventive health care, which could cover much of the maintenance medicine many of us with chronic illnesses use every day. Long-term care would also get an assist from at least one of the proposed bills, which is essential for women, who tend to live longer than men and may not have a constant caregiver in their senior years.

But no single bill has all the answers I want to see for women. And I worry that any bill that makes it through won’t contain the measures we need to ensure all women in this country—especially those of us who live with everyday illness—get the health care they deserve. I don’t want to settle, but at this point I would almost be happy to get anything passed, just to be able to say we’re making headway.

It’s a wonder any person in our country can remain unconcerned about health care reform; it amazes me that more people with chronic illness aren’t up in arms about the possibility a bill won’t be signed in coming days. I hear a lot of grumbling in the press but I don’t see a lot of action by individuals in their communities.

A colleague commented recently that a nationwide mobilization like that which helped elect President Obama could surely push health care reform through, could achieve dramatic action once again. Where is the response that so greatly invigorated the election campaign?

I encourage women to do their homework, to check out resources like the health insurance reform spotlight created by and the Kaiser Family Foundation’s comparison of reform proposals. But how do we unite to achieve significant, game-changing success? I do what I can to educate my cohort of sick chicks, but there are only so many tricks in my toolbox.

I agree in many ways with Nancy Folbre, who spoke eloquently in the New York Times recently, saying “Health care reform is a woman’s issue.” She cites pregnancy and family planning as just two instances in which women bear a greater share of cost and responsibility; she also points out that “mothers often take primary responsibility for meeting children’s health care needs.” I shared her article on Twitter and got a reminder from a filmmaker friend here in Chicago, Jennifer Peepas: “And women’s issues are human issues,” she replied. She’s right: Women may stand to gain more from health care reform, but everyone—men and women alike—must be strong advocates if we expect real change to happen. I would love to see my guy pals fight to insure their pregnant friends, to make sure their daughters (and grandmothers, and sisters) are covered equally.

How will we work to ensure women with chronic illness have access to health care, in the coming days and long into the future? I’m not sure—I’ll do every little part I can, and I’ll share every resource I have with everyone I know: men, women, sick folk, healthy friends. We’ve seen big change happen in the past year. I believe we can unite and make big change happen again. But I’m too tired to lead. Maybe we can make it happen together.

Tags: Health