AIDS, stigma, and finding a cure

Posted by Dave on February 25, 2010 | 2 Comments

One of the first things Amy Brooks told me when I interviewed her about this project is that she was concerned that AIDS was becoming “just another chronic disease.” Part of the reason HIV and AIDS tend to be forgotten in the public health landscape is that they are, to an extent, manageable, just like heart disease, diabetes, and breast cancer. Though clearly thousands of people here in America are struggling with AIDS, I’ve met people who have done all right living with AIDS for more than 20 years.

I’ve thought about that a lot over the course of the past month. What would my month have been like if, instead of AIDS patients and doctors, I visited cancer patients and doctors? While clearly many families face horrific battles with cancer, can we say HIV and cancer are comparable? Well, it would have been different because the diseases are different. Cancer isn’t actually a monolithic “disease” — it comes in many forms. Skin cancer, while it can be deadly or disfiguring, is usually treatable. Breast cancer, which has a comparable death rate to AIDS, is treated over a period of a couple years, while treatment for AIDS continues for life. Pancreatic cancer, unlike AIDS today, is nearly always deadly.

There are thousands of heart-wrenching stories about families dealing with cancer, just as there are with AIDS. But even if the symptoms and treatment of HIV and some other disease were similar, HIV has its own unique set of issues. It disproportionately affects people of color: African Americans are about 7 times more likely to contract HIV than Caucasians. It is acquired through activities that many people find immoral: by far the most common means of transmission in the US are men having sex with men, and intravenous drug use. There are many people opposed to AIDS education simply because they don’t want their children learning about the types of activities that cause it.

Consider the poll I posted last Friday. Despite the fact that the audience of this blog is highly educated and clearly sympathetic to the issues facing people with HIV and AIDS, half of the respondents said that when they found out someone is HIV positive, they want to know how that person got the disease. Even more telling, despite this interest, only two people said they would ask the person directly how they got the virus. If there wasn’t a real stigma to HIV and AIDS, then there shouldn’t be a problem asking how it was transmitted, right? Most people don’t have a problem asking someone how they broke their leg, for example, even though the answer could potentially be embarrassing.

This is not to say that other diseases are not stigmatized. On Tuesday I attended a panel discussion about disease, and Shelley Rigger, a political science professor at Davidson College, noted that the bubonic plague in the 17th century was typically blamed on outsiders and Jews. In the recent H1N1 pandemic, Mexicans were singled out due to a perception that they were carriers of the disease. In a striking example, Rigger noted the case of a Mexican businessman who lived in China. After the outbreak started, he wasn’t allowed back into China following a business trip to the U.S., even though he never set foot in Mexico.

None of this, however, stopped the U.S. government from spending hundreds of millions of dollars to avert a calamity. Clearly there’s something more pressing about a disease that can strike “anyone” rather than “just” gays and drug addicts. Because AIDS primarily affects people who are already marginalized, it may be easier to ignore than other diseases.

In just the month since I’ve started this project, two projects assisting Charles Roth have been cut. He’ll no longer be able to visit his regular physician, use his regular pharmacy, or get support from his drug adherence program. Here in North Carolina, the state has capped its Aids Drug Assistance Program, meaning people who develop AIDS and don’t have insurance will not receive subsidized medicine from the state. There are a few other programs that might cover them, but I met a man earlier this month who didn’t qualify for any of them. His last recourse was to apply directly to the drug manufacturer for assistance paying for his medication. He still hasn’t found out if he will receive it.

There’s an argument to be made that money is better spent on prevention programs than treatment, especially given the high cost of treatment: it’s much more cost-effective to prevent AIDS than to treat it. But again, because effective AIDS education involves frank talk about sex and drugs, many Americans are opposed to it, regardless of the benefits.

Is there hope for the future? I’ll have more to say about this tomorrow, in my last post about HIV and AIDS.

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