Paige Schilt

A Plea for Putting Health Care at the Center of Our Movement

Filed By Paige Schilt | February 23, 2009 4:30 PM | comments

Filed in: Living, Living, Marriage Equality
Tags: health care reform, health insurance reform, LGBT health

This past Saturday, I received two telling pieces of mail.

The first was a thick package of postcards for the upcoming Philadelphia Trans-Health Conference at the Mazzoni Center.

The second was a doctor's bill. My wife, Katy, has rheumatoid arthritis. A cutting-edge generation of medicines has allowed her to manage the joint pain and degeneration, but the effectiveness of each new drug diminishes over time. Recently her doctor ordered a treatment that must be administered in-office. The cost of a single biweekly dose: $2800.

Perhaps it's an indication of how inured I am to health care crisis, but my first thought was, "We can address postcards while we wait on hold to haggle with the doctor's office."

Activists who work on marriage equality are frequently encouraged to share their stories. But marriage equality will not fix my family's health care problems, nor will it fix the health care disparities faced by most of my communities. So today, as I look forward to National LGBT Health Awareness Week (March 8-14), I want to talk about why I am beginning to shift the focus of my activism to health care access.

Our family's situation is better than many. In a nation where 47 million people are uninsured, we actually have health insurance. In a nation that organizes health care access around employment, relationship status, and good health, we are extremely lucky to be covered at all.

It almost goes without saying that our home state of Texas, which passed a marriage discrimination amendment in 2005, does not recognize our relationship status. But even if Texas were to miraculously pass some form of civil union or marriage equality, it would not be a silver bullet for our health care woes.

Katy and I are both self-employed. And because she has rheumatoid arthritis and hepatitis C, Katy is virtually uninsurable on the free market. The state allows her to purchase private insurance through what's called a "risk pool." For this dubious privilege, we pay more than $700 a month--about what it costs to rent a one-bedroom apartment in Austin.

Luckily, Katy and I are able to earn enough to cover the costs of Katy's policy, as well as private insurance for our son and me. What's more, we both come from supportive, middle class families. Katy's parents routinely help us pay her medical bills until her high deductible kicks in. But for many of our friends and loved ones, family support and private health insurance are simply out of the question.

Our community in Austin is made up of musicians, artists, and activists. My friends--and especially my queer elders--have inspired me to make my own path, to live my values of justice and creativity and love. But now, as the people around me enter their forties, fifties, and sixties, I am seeing lifetimes of courageous choices come up against the reality of living without the safety net of health insurance. A few have been forced to take physically demanding jobs in order to get benefits. Others have been navigating the frustrating (and diminishing) world of low-cost community health services. Some are simply going without care. And that means that, eventually, my queer community will be smaller and less vibrant because of a lack of access to health care.

I like to think of health care access in terms of a Venn diagram that connects me to increasingly broader communities. There's the LGBT community, but there are also immigrants, young adults, people who are un- or under-employed. Then there are the workers at my son's preschool. Many of them have been working at the same school for 15+ years. They've dedicated their professional lives to creating a child-centered intentional community. They basically taught me how to be a good parent. But they don't have health insurance.

Last fall, one of the teachers--a married mother of five named Jenny--had a freak brain aneurysm. While she was in the hospital, parents at the school organized to bring meals to her family and collected cash to help with the bills.

I was proud to be part of such a caring community. When Katy had a heart attack in 2003, I learned the importance of friends who show up to cook, clean, and care when someone is sick. I could empathize with Jenny's husband, because I know what it is like to sit at your partner's bedside, unsure whether she will live or die, and to find that part of your mind is compulsively totaling up the financial devastation of hospital bills and missed work. Luckily, Jenny survived and even made a miraculous recovery. But the teachers at her school are still uninsured and vulnerable.

We need more than piecemeal solutions. Americans need health care as a basic human right that is not based on employment, relationship status, health history, gender, race, class, or any other social marker. And although LGBT communities face many community-specific health care challenges, our basic need for access and adequate care is something that connects us, perhaps even more than marriage, to other communities and other struggles.

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"Americans need health care as a basic human right that is not based on employment, relationship status, health history, gender, race, class, or any other social marker."

YES, YES, and YES!

I can't say any more because I've just worn myself out writing about the same in response to some pro-marriage diatribes over at my recent post; all I can do right now is quote bits. Like: "Activists who work on marriage equality are frequently encouraged to share their stories. But marriage equality will not fix my family's health care problems, nor will it fix the health care disparities faced by most of my communities."

I like your point about Venn diagrams. I wish more people would adopt that model - rather than the locked-down, shut-off square box that is gay marriage.

And I do hope your wife's health improves, along with the ongoing health care crisis. $2800 for a single dose? The next thing the government needs to look at is the giant rip-off that is the pharmaceutical industry in this country. In many ways, its short and long-term effects are more life-threatening than those of the banking system.

I agree about that too. I remember when I first came out to france, an American co-worker of mine, within his first week here, needed a root canal. He didn't have his insurance card yet so he had to get the paperwork from the dentist to apply for a refund (which he got), but had to pay the 80-some euro out of pocket. The dentist said, aren't you glad you're getting reimbursed?

I have no idea what a root canal costs in the US, but I'm guessing it's far more than about 100 dollars. Not only do we have worse coverage than other rich countries, we also have to pay more for everything since our government is unwilling to do anything to control costs.

And then the pharmaceutical industry, especially, is out there telling people that we can't have innovation and low costs of pharmaceuticals at the same time, which is just baloney. I grew up in a middle class suburb of Indianapolis with some pretty swanky neighborhoods, and the city is supported through a major pharmaceutical firm. These folks aren't about to go broke, not by any means, and they're living fat of the fact that people can't organize against this, not with the elected officials we have, not with the mindset we have now.

Oh, well. And then we have folks like Bush on the other hand who say that the only reason medical costs are so high is because of lawsuits. Funny Republicans should pick the only means of regulating the medical industry as the culprit.

OK, that was a disorganized rant, but this whole issue, and our country's complete inability make headway into it, gets me upset!

Paige! Thank you for this. I have been thinking about healthcare a lot lately, specifically as it pertains to the LGBTQ communities. As an unemployed individual from a lower economic status than many, I have been the patient of many a free or low cost health care situation. It's frustrating to live in a country that is interested primarily in health insurance and not so much health care. Something that should be a basic human right instead is a capitalist free for all. Unfortunately, even those of our LGBTQ siblings who are lucky enough to get adequate health insurance are struck with other obstacles: inadequate health care for folks outside of the cisgender, heteronormative world. Doctors who don't know how to administer hormonal replacement therapies or who don't know how to care for the sexual health of lesbians or gay men, medical "professionals" who want to exploit our trans siblings as medical oditties, the list goes on and on. Not only do we need adequate health coverage for people, but we also need adequate healthcare. :(

Jess, I agree that health care quality is just as important as access. But that's another blog...

For Christ's sake, anything other than the narrow definition of marriage.

To amplify what Jess is saying, we don't have a healthcare system in this country, we have a sick care revenue system. There are a few pockets of health focused practitioners - usually attached to academic medical centers (which bring on their own set of inequities - but that is a rant for another day).

Access to treatment is only part of the solution. The key is to avoid the need for treatment in the first place. Health starts at the grocery store. Try shopping for fresh fruits and veg with what a school crossing guard brings home on a paycheck. Health starts on the school playground at the recess that most kids don't get thanks to No Child Left Behind induced testing no money for anything else mania. Do I need to go on?

We need more primary care Docs and Nurse Practitioners working in community care centers. They need to be supported by community health workers. And it all needs to be financed outside of the workplace.

I have never been able to understand why it is that socialized healthcare does not exist in the US. I don't think anything would cause a revolt faster in Canada than ending our healthcare. It is a human right. I have a chronic illness and have not had to worry about a single medical bill. In a time of illness finances should be the last of your concerns. Let's hope that Obama makes this a real focus of his presidency. Most often people don't realize how terrible the need is until they are in a situation where they cannot afford the care that they need. It should be telling that in a poor third world country like Cuba the average citizen gets better care than in the US with all of the fancy hospitals.

From my policy-wonk friend, Seth, who commented on my FB page:

I would note that we actually provide free health care to all in this country, but only in the most inefficient, ineffective way possible - we require that you wait until you're critically ill, then show up at an emergency room. Not only is that less than perfect, it's results in increased health care costs and a reduced general health of the population; the exact opposite of a well functioning health care delivery system.

Moreover, our current system for delivering health care has serious negative impacts on our economic competitiveness. By continuing to focus on employer provided health care, we burden businesses with ever increasing health care costs, while simultaneously reducing access to care, resulting in a reduction to the overall health (read: productivity) or our workforce.

Even those not moved by a sense of moral duty should be troubled by the health care delivery mess we find ourselves in.

Sometimes I think about how weird it is that we provide access to health care based on 1) employment and 2) marriage or family membership. Then I see the beauty of it as conservative social policy: how better to keep people punching the clock and investing their "free" time in heterosexual family than to make sure that that's the only way they can afford health insurance.

There's a good quotation about that in Nancy Polikoff's recent book about Beyond Marriage (have you read it? It's really, really interesting). There was a lawsuit in a school district (I think Chicago) because the schools were providing health care benefits to same-sex domestic partners but only to straight married partners. the idea was that gay couples can't get married, so they need free-wheeling dp benefits, while straight couples can, so they should just get married.

Well, a teacher sued because she didn't want to marry her male lover, but he needed health care coverage. She argued that it was discriminatory that, as a single straight person, she didn't get the same benefits single gay and married straight people were getting.

She lost, and the judge said in his ruling that there was a legitimate interest in maintaining the strength of the institution of marriage in limiting health care to married, straight couples.

It's all telling, and it shows that it's definitely intentional - these folks think that people will just marry for health care. And, fact is, they do:

I wish I brought Nancy's book out here with me though, but I left it in the US of A since books are heavy....

Thanks Paige! You can join me in ranting into the ether on this issue, since I've been blogging for nearly two years now about how universal health care access is an lgbt issue.

We make less money than our straight counterparts, face more discrimination in the doctor's office in general, and have less access to marriage to provide health care. Take that with the fact that trans people have specific medical needs that private insurers often refuse to cover, that gay men were ravaged by an epidemic that's still going on, and that hate crimes against LGBT people are still common and often result in further medical needs, and there's all the more reason to argue that health care is an lgbt issue. We're definitely at far more risk than the rest of the population.

All I can imagine is that the folks against universal health care cackle when they hear horror stories about people denied medical treatment. Since that's seeming more and more like the only reason this is going on.

eric vasallo | February 25, 2009 2:13 PM

Thank your for your blog. Let's hope Obama can make this happen!