Health Insurance for HIV'ers

The availability of health insurance is a topic is near and dear to most people living with HIV. We have heard time after time that early intervention and treatment are important factors in surviving HIV infection. In the current American health care system, if you have a job you MIGHT have coverage to pay for that early intervention. If you are poor, and especially if you haven't yet been sick (or if you haven't been "sick enough") you most likely do not have any coverage at all.

Why is this so? It is because, in America, the health care system is subject to the "free-market." Health care financing is managed by health insurance companies and health maintenance organizations. The first goal of these companies is to earn a profit. Their secondary goal is to provide health care to their insureds. The system was developed in the 1970's, with a promise that it would result in more people being covered by insurance.

The result, however, has been somewhat less. At last count, there are still 47 million people in this country who do not have any health coverage at all. Some of these people are HIV+, and many of them do not yet know it. Under the current system, these people will most likely enter the system only when they become profoundly ill--a senseless and needless tragedy.

Here is an example of how it works. This is the true story of an HIV+ young man I know (who has given permission for his story to be used here) who fell through the cracks. He tested positive for HIV in the late 1980's, but lacked insurance and so believed there was not much he could do but wait to die. He'd had a couple of jobs that offered health insurance, but the coverage always terminated when he left the job.

I asked him why he didn't stay in one of those jobs--his answer was that keeping health insurance was not a good enough reason to stay in a bad job. But that was the only option available to him. That, or go without.

So, he went without. Even when he started feeling like he was getting sick, he couldn't see a physician because he couldn't afford the fees. Until one day he got so sick that he was taken to the ER. There he was diagnosed with PCP, and admitted to the ICU. He spent 2 weeks in the hospital. The bill was $70,000. ONLY because he had fallen gravely ill, he was now eligible for Medicaid, which picked up the tab.

For the next few years he maintained himself on Medicaid, and was able to see a physician on a regular basis. And he got better. In fact, he started feeling so well that he decided it was time to return to work. He found a job he liked, which unfortunately did not offer health insurance as a benefit. Unfortunately for him, Medicaid is a poverty-based benefit, and when he returned to work, he became ineligible to continue on the program.

I asked him why he went back to work, if it could jeopardize his health care. He said that he didn't know that he would become ineligible when he started working again, but that it wouldn't have mattered anyway--he wanted to work.

So, he went off his meds, and stopped seeing his doctor. He lasted about four years before he got profoundly sick again (go figure). He then got back onto Medicaid. He is now feeling good again.

(By way of shameless self-promotion: It was at this point in his story that we met, and I was able to get him approved for disability benefits. He now has Medicare and Medicaid, and he will never be uninsured again. The story does have a happy ending!)

He is not the only person with HIV to have a story like this. As I've said, mine is similar, and it is a story I hear way too often from my HIV+ clients. Why should this be so? Because the American health care system is very poorly organized, and geared toward profit. Access is almost exclusively through employment. Not every job offers health insurance, though.

So what can we say to the HIV+ people among the 47 million uninsured? Don't get sick? Or if you get sick, get really sick or you face financial ruin. (Example: I just referred someone to a bankruptcy attorney, who has $300,000 in AIDS-related hospital bills)

This cannot be acceptable in 21st Century America. America is alone in the world with this "health care for profit" nightmare. In the rest of the world, health care is a right; here it is merely a benefit.

The only solution, in my opinion, is something known as "single-payer" insurance. The single-payer should be the government; and profit should not enter into the equation. This has been proposed in Congress: House Res. 676. Will it pass anytime soon? What do you think.

Under a single-payer system, the young man whose story I told would not have had to wait until he was at death's doorstep to see a doctor, and he might not have gotten sick at all. There would have been no reason to refer the other client to a bankruptcy attorney, since if there were a bill at all, it would have been for much less.

Even though it is not a popular opinion in this country, we do bear a responsibility for each other. We really are all in this together. Is this collectivism? Yes. Is that a bad thing? NO!

People living with AIDS have a special responsibility to point out the seriousness of this problem, because we experience it more profoundly than others, and to help move society toward a solution. Work is being done right now; HR 676 is one example of a good solution. I believe that NAPWA is also working on the issue. I will edit this post shortly with specifics about their efforts (unless someone beats me to it in the comments.) Get involved. Make your voice heard.

Edit: I was wrong about NAPWA. If they have a health care advocacy initiative, I didn't find it on their website. Which doesn't mean they don't have one. In any event, I am looking for advocacy initiatives, and will report what I find in future posts. If anyone has information related to this, please post it here. It will be greatly appreciated. JR

This post is the first in a series that will look at solutions to the health insurance problem. Future posts will deal with the various proposals for health care reform. HR 676 is one, but there are others. I will write about all I come across--including the ones I think are a bad idea. I also plan to write about the presidential candidates and their different proposals. Here's a hint: the Republicans like the status quo, as do some of the Democrats.

If you have a health care nightmare story that you would like to share here, please feel free to vent in the comments. Posts from HIV+ people living in other countries are welcome too. Tell us how ridiculous we are, but please offer some suggestions. We need all the help we can get. Or if you have anything other thoughts on the subject, feel free. Like I said, we are all in this together. Get involved.