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My Meantime Blues

By Heidi M. Nass

January/February 2005

My Meantime Blues
Recently I was asked to write a short, basic piece about the status of HIV treatment for a local newsletter in Madison. I wrote about how many drugs were available, but that some of them are too alike or too toxic to be useful, and how we urgently need new agents that work on new targets to help people with lots of viral resistance. I showed the finished piece to my boss, a dedicated and skilled HIV physician of many years, who wondered if I could make it, well, more "upbeat" I think was the word.

I realized that the different perspectives of my boss and I illustrated how one's view of this epidemic is informed by where one sits. His medical practice has gone from managing one opportunistic infection after another with fingers crossed and little else to offer, to navigating an arsenal of drugs for patients who are re-acquainting themselves with the notion of old age. And me? I live with this virus.

Clearly, there are reasons to be encouraged. Progress has been swift -- we've learned an enormous amount in a relatively short time. We've gone from no weapons to fight HIV to 26 antiretroviral drugs approved in the U.S. Many of the medications approved in recent years are much easier to take than what was available just 10 years ago, which is helping people keep the virus at bay. We have a genetic map of the virus and researchers who are exploring all the places the virus might be vulnerable to attack. We are learning things about the immune system that weren't well understood before, which may show us new places to disrupt the infection and disease process.

Still, we've got troubles. HIV integrates itself into our DNA, making it difficult to flush out and eliminate -- the perpetual lack of promising vaccine candidates illustrates this painfully. HIV has proven itself to be a wily opponent -- prolific enough and sloppy enough to make the emergence of resistance to medications an inescapable eventuality. The continual development of new classes of antiretrovirals is the most feasible way to stay ahead of the virus.

Where science and politics intersect it gets even more worrisome. It's taken way, way too long to mobilize the political will to develop a workable microbicide that would allow continent after continent of women to protect themselves from infection. Instead, we have leaders who preach abstinence as the way of prevention in places where the single greatest risk for HIV infection is being a married, monogamous woman.

While drug companies and governments have been playing their murderous blame game with each other, AIDS has been marching across Africa, Asia and Eastern Europe, killing by the millions. Here, in the richest country on the planet, poor people die on wait lists for medications.

I want to be more, um, "upbeat" -- I do. It's just hard to reconcile a sunny outlook with what I see around me. In recent years, the U.S. rates of HIV infection and AIDS diagnosis have increased. Meanwhile, after dropping 70% between 1995 and 2002, the AIDS death rate has stopped falling. Our community of treatment advocates keeps losing remarkable national activists to AIDS -- Carlton Hogan of Minneapolis and Joel Martinez of Houston in the last year alone. A woman who spoke at one activist's funeral expressed the feelings that many of us share when she said, "I just feel broken."

Don't get me wrong. I'm more grateful than I could possibly express that there are extraordinary people among us who would be dead by now were it not for the progress that's been made in treating HIV. I just want treatment to advance at the speed necessary for them to stay ahead of the virus.

Talking about AIDS as a "lifelong manageable condition" seems premature, given the trickle that is our pipeline. I want pharmaceuticals to aggressively pursue development of ways to stop this virus cold instead of fine-tuning and re-packaging what they've already sold us. The current agents have shown they have an effectiveness expiration date and toxicities that may further limit their long-term use. We need committed, creative exploration of new approaches instead of recycled, take-it-to-the-bank drugs with nothing new but a fancy name.

There are 26 approved anti-HIV medications. If we subtract the ones that are just combinations of two or three drugs in one pill, and those that aren't really good for much, we're down to about 20. After we account for the fact that some cannot be used together and others are of no use to people who've been around the block with these medications, what sounds like a treasure trove of regimens is, on closer inspection, a good set of choices for someone new to ARV therapy and a dodgy selection for the rest.

There are some agents in development that work on HIV in a whole new way. If these new medications pan out, we can begin to imagine a future of treatment that looks different, and more hopeful. However, those of us living in the meantime must confront an evolving set of confusing and complicated questions and carefully craft our treatment decisions from a disjointed, dizzying landscape of data.

Should I start treatment now or wait? Sounds like a straightforward question but requires some careful consideration -- an earlier start on antiretrovirals can suppress viral load and postpone disease progression, but it also means more exposure to toxicities and side effects and more opportunity to miss doses, which invites viral resistance and a reduction in future options. It's a delicate decision that should rightfully take into account the whole of a person's situation, not just viral load and CD4 count.

Should I focus on what would be easiest to take or what would be the most potent? Medications have improved but, regrettably, this choice is still real. Some medications that are more forgiving of missed doses also have more side effects and a more difficult dosing schedule. The decision is compounded by the specific viral mutations that any particular regimen invites, and the need to consider which regimen will have the best "go-to" option if (more likely, when?) viral resistance develops.

If my virus is suppressed but my regimen is getting harder for me to take, can I switch to something easier? Will a new regimen have new side effects? ... will it be as potent? ... if I stay on my current regimen, will I start to miss doses because it makes me miserable? HIV treatment is loaded with choices between the devil we know and the devil we don't know, and this is one of them.

If my virus is not suppressed but I'm tolerating my current medications, should I switch or stay? People who are not suppressed on their first regimen will likely have a feasible Plan B. People who've been on various regimens with limited success have a tough decision to make and must take into account competing interests and concerns: if I maintain a viral load, will I incur deeper and deeper resistance? ... if I have some virus circulating but my health is stable, dare I rock the boat by switching? ... will a regimen that is potent enough to knock down resistant virus be tolerable? ... should I try to hold out until there's more than one new drug (or two?) available to me? Like no other, this question divides people who are treatment-naive from those who are treatment-experienced.

Many people never even get to these questions, as they constitute a privilege all too closely associated with race, gender and wealth. A recent observation study of 3,000 HIV-positive people in the U.S. showed that, while a modest viral load doesn't make someone more likely to get sick or die, a viral load over 20,000 copies/mL does. In the study population, those who had higher viral loads were significantly more likely to be non-white and have spent less time on antiretrovirals. This data is consistent with other studies showing that poor women, blacks and Latinos are offered antiretrovirals less often than others.

Globally, the situation is gruesome and devastating. Millions of people are dying -- not because they have a fatal disease that has no treatment, but because they can't get their hands on the treatment. The failure of their governments, the pharmaceutical industry and wealthy nations to craft a solution -- something that is within their joined means to do -- is killing families and destroying communities around the globe.

The mediocre monetary commitment of the U.S. government to the Global Fund to Fight AIDS, Tuberculosis and Malaria falls shamefully shy of its contribution capacity as the world's wealthiest nation. In South Africa, the hardest-hit country on the hardest-hit continent, years were lost because the government denied that HIV is the cause of AIDS. And then there's the pharmaceutical companies.

Last year, at the first meeting on drug pricing between people living with HIV/AIDS in the developing world and representatives of international pharmaceutical companies, Roche was the bluntest of the bunch: "The fact that our drugs are not affordable in some parts of the world is not Roche's responsibility," the company representative said. Boehringer Ingelheim explained that Central America was not getting the same price for their drugs as the Caribbean, even though the regions are economically similar, because they were controlled by two different BI offices. "It is a big internal battle within the company," the representative said. "Any company has a lot of politics; and we have a lot of people who came up through the pharmaceutical industry." GlaxoSmithKline defended its practice of redefining what constitutes its "no profit" drug prices to take into account whether cheaper generics are available by saying, "You see this anywhere generics come in. We cut prices to keep a part of the market. It is a commercial practice."

Given the nature of corporate practices, the deficit of political will, the imposing scientific challenges and the dimensions of the epidemic, is it any wonder I have a hard time getting to "upbeat"?

Newly diagnosed people sometimes ask me, "Do you think we'll see a cure in our lifetime?" I can't bear to say "no" -- if there's ever a time to be upbeat, it's when you're talking to someone just diagnosed with a life-threatening disease. "We'll see," is what I often say, followed by, "In the meantime, our challenge is to make the best use of what's available to us so we're in the best possible position to take advantage of whatever comes next."

My friend, Matt, said it all in an e-mail exchange we had last year during a spate of deaths in our activist community: "... after all the good news with ARVs, we are shaken to deal with the losses again. I look at the deaths as another wake up call ...

It brings back the reality of my situation, and I get worried about my health. On the other hand it gives me more resolve to keep on fighting."

The truth is, the meantime is all we've got.

Heidi M. Nass is a lawyer turned treatment educator and community advocate based in Madison, Wisconsin. She works at the University of Wisconsin HIV clinic, which serves 700 patients. She writes about HIV-related topics for various publications and is a member of the national AIDS Treatment Activists Coalition (ATAC). She has been living with HIV for 10 years. She can be reached at

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