why I walked

I admit I only signed up for the AIDS Walk because L, the HIV social worker in my clinic, was the captain of the team and intercepted me on the way to the hospital cafeteria with her strategically placed table.

And when I got to the walk this morning, many of our "Team Members" had evidently contented themselves with having raised a little bit or a lot of money--most didn't show up to our team meeting spot on the rainy morning of the actual walk. That's fine, really; our hospital employee team was a "Gold Team", and as a medicine resident from a rival hospital sheepishly noted, our hospital's team raised more money than that other bigger hospital's team did. Really, everyone who shows up and takes a tote bag and water and granola bars is probably just costing the AIDS Action Committee money--so maybe it's a favor to raise money and then bag the walk--there's even a category called "virtual walkers" to describe this strategy.

Still, it seemed like I was supposed to be there, so I went.

(continued below)







By mile 2 or 3 I'd separated from my fellow employees and could have easily hopped the T and gone home. Our hospital had done its bit--a community relations person had waved our sign around, we'd raised our money--and now it was time for the teams of the corporate sponsors, college charity groups, and AIDS non-profits and government agencies to finish the walk. Or so I thought for a moment. And then I started really making note of a small but persistent group of teams, each with their team t-shirts, made to memorialize a family member.

(continued below)












It was the 25th annual AIDS walk in Boston--they've been doing these things since 1985. A long time. Walking on my own, I was speeding up to get back to the finish line. I thought some about the morning teaching session I need to do on Wednesday--I think I'm going to do it about a patient of mine with AIDS.

As I walked, I noticed that the AIDS Walk had put up these little signs noting each year of the walk and events in AIDS history. I started doing AIDS work and volunteering in 1991, when I arrived in San Francisco. It was the red ribbon/Magic Johnson year, the signs reminded me--the year that AIDS most clearly became a part of mainstream culture. Sometimes I can be hard on myself about why it was I started then, when it was easier, and not in 1988, after I found out that my student government teacher had died, or in high school, in the mid-eighties, when passing out condoms would have been a radical act. (To ease up slightly on myself, it's true that I hadn't yet really had sex myself, so the gesture would have been a complicated one.) But then the next panel reminded me: that next year, 1992, was the year that AIDS became the biggest cause of death for young men in the United States. And in 1992, it only seemed like it was going to get worse.





1991-2010: I've been somehow involved in AIDS work almost all of those years, with a few small breaks for parts of my medical training. More than half the epidemic--in fact, now, about two-thirds of it, minus the very worst years. Next year will be 20 years, out of 30. I don't know what to say about that exactly. I could have stopped in 1997, since from 1991 to 1996 I said I would stop doing AIDS work and start doing something else "when the crisis is over" and when I said crisis I meant the kind of mass death that ended in San Francisco with highly active antiretroviral therapy.

But I didn't stop, though most of my friends who were also there for the crisis did. I'm still not sure why I didn't go do something else. For a brief moment in 1997, I almost went to work for an ad agency but I got another AIDS job instead, and I was relieved and knew I'd made the right choice. During a year in a lab, I found that I was depressed until I started volunteering for a needle exchange program.

No one I was super close to died or even got sick. There wasn't some big cathartic event, other than living in San Francisco in the early 1990s, that kept me going. I just kept thinking about AIDS because I kept thinking about AIDS, even though there would have been a lot of other alternative paths for me in which I probably could have done greater good for a greater number of people. So it's not like I'm claiming a moral high ground. I'm just observing the persistence of a theme. It is what it is.

Given that I have kept doing this work, kept connecting myself to this epidemic, I'm glad I got out in the drizzle and walked. Not for my hospital. And only partly because of the AIDS Action Committee--since the money raised was raised whether or not I walked, and they probably could have given my tote bag to encourage one of their nutrition clients to go to the farmer's market or something.

Mainly, I was glad to walk because those little clusters of families with their team t-shirts deserve to have lots of people around them when they gather together to remember someone now gone. It also gave me a couple of hours to think about how long this epidemic has kept pulling me back towards it, for reasons I don't entirely understand.

If you want to give some money to the AIDS Action Committee--they're good people. I know them personally because they're getting food and other services for one of my patients who's really sick, and a few years ago they got me down to the statehouse to help lobby for their (successful) effort to decriminalize syringes and make clean needles available in pharmacies in our state. They do a lot of other great stuff too. Here's the link to my AIDS Walk fundraising page.

And: thanks so much to that small but sweet group of friends and family who donated--it means a lot to me. It's true that because of your donations, I qualified for a tote bag; but more importantly, my patient will get some food. And trust me: he needs it.

Stop Obama's misguided global AIDS policy

Photo: Kaytee Riek, whose other photos of this recent demo can be found at kayteeriek.com

President Obama is making big mistakes on global AIDS. Click to read South African AIDS activist Zackie Achmat explaining why.

See also:

TakeANumber.org

New York Times

Zackie Achmat in New York, May 13 2010:

Mbeki as Macbeth

Someone has actually tried to do the math now that he's gone: how many people died as the direct result of Thabo Mbeki's AIDS policies? This particular estimate puts it at 365,000 lives and 3.8 million years of life.

Whatever the number, it was a lot:

As Zackie Achmat says in this NYT article:

“He is like Macbeth. It’s easier to walk through the blood than to turn back and admit you made a mistake.”

NO OBITS

I remember that week because the epidemiologist I shared an office with put the headline up on her bulletin board:

"NO OBITS"

We took good long looks at the headline, quietly reflecting, finding ourselves happy to realize that we had definitively arrived in a new era. As a guest opinion in this week's Bay Area Reporter reminded me, it was 10 years ago this week that the BAR ran this headline as a huge banner on its front page. In August of 1997 in San Francisco, none of its readers had to be told what the headline meant.

The BAR is a gay newspaper in San Francisco, and for various reasons it essentially became the newspaper of record for gay men's obituaries there. And so, from early on, it served as an ongoing record of the community's losses from AIDS. The obituaries were written by the friends of the deceased; there were only a few rules, including a strict word limit and the stern instruction, "No poetry." In the worst days of the mid-1980s, the obits went on for pages.

10 years ago, San Francisco already had a couple of years experience with protease inhibitors and the concept of three-drug combination therapy. First they'd appeared in the medicine cabinets of savvy gay men who got them through clinical trials and parallel track access. Then in 1996, more and more people with HIV and AIDS got these medicines from their doctors and the neighborhood pharmacy, just like any other prescription drugs. There were still people dying, especially those who had already accumulated too many medical problems to benefit from the new treatment approach.

But by August 1997, the change that HAART brought was so pronounced that an obituary section that had once run pages long was suddenly gone.


This week, the BAR has two obituaries. Both men died of cancers that don't seem to have been HIV-related. This week, we can't say, "No obits"--but that's because these gay men got older and died of things that older men die of.

I remember some people fussing over the headline in one way or another. Various people who had been highly engaged in AIDS work were afraid that the new era would bring complacency about HIV prevention. They worried that celebrations of the effects of the new medicines would cause HIV-negative people to think that there was nothing that bad about having HIV. And of course, on the day the headline ran, thousands of people were dying of AIDS in other places besides the Castro District, including in neighborhoods of San Francisco where no one sent in obits to the BAR.

But one can always find a dark cloud within every silver lining. Sometimes it's still worth celebrating the silver lining.

"NO OBITS"

It was worth celebrating then, and worth remembering today.

HIV meets diabetes meets HIV

In the early 1990s, I never believed it would happen. But in mid-February 2007, I heard a cardiologist talking about the cardiovascular effects of HIV, who then put his talk in context by casually saying, “Even so, I’d choose to have HIV over having diabetes.” The doctors-in-training listening nodded in agreement. They probably didn’t remember that people used to talk about comparing HIV to diabetes like it was an impossible dream.

In 1992, Bob Rafsky, a person with AIDS and a member of the activist group ACT UP, wrote in the New York Times, “It's always possible we'll win. The drug, or drugs, that will turn AIDS into a chronic illness like diabetes will finally be discovered.” But, he wrote, “it's not likely, at least not in time for me.” Rafsky died the next year, in 1993.

Just three years later, starting in 1996, the kinds of drugs Rafsky had hoped for arrived in wealthy countries like the United States, used in combinations of medicines that together became more than the sum of their parts. Along with other improvements in HIV care, that allowed people to live with HIV for much longer periods of time than before.

Even back in 1996 and 1997, people were starting to say that living with HIV could finally be like living with diabetes, a difficult but manageable chronic disease. This didn't mean that it would be easy.

With modern medical strategies, the most common and serious effects of diabetes aren’t short term crises of sugar levels, but the effects of long-term damage to blood vessels: problems like stroke, heart attacks, kidney failure, blindness, nerve problems, and foot and leg infections that can sometimes require amputation.

Avoiding these problems over the long-term requires constant vigilance. In fact, as HIV medications become easier and simpler to take, sticking to them is often less complicated than sticking to diabetes regimens.

Especially early on, most Americans with HIV got the virus either from unprotected gay sex or sharing needles, which is part of how HIV got the stigma that it still has today. By contrast, Type I diabetes often comes in childhood, as a result of an autoimmune problem; no one blames people with Type I diabetes for their disease.

But stigma does influence how society responds to the much more common kind of diabetes, called Type II diabetes. Whether people get Type II diabetes has a lot to do with genetics. But higher amounts of body fat are associated with higher risk for Type II diabetes. That’s political poison for mobilizing a response to Type II diabetes, because Americans tend to misunderstand why people gain weight, think of fat as a kind of moral shame, and vastly underestimate the difficulty of losing weight and keeping it off. And so society can distance itself from Type II diabetes, by blaming the disease on the people who have it.

When AIDS was a more lethal disease in the US than it is now, it inspired intense fear and stigma and discrimination. In the late 1980s and early 1990s, people with AIDS and their allies, including activists like Bob Rafsky, began speaking against that fear and demanding the solidarity of others. They won the support of many; red ribbons became de rigeur for celebrities for a while. That kind of activism (both the angry kind and the syrupy Oscar ceremony kind) helped bring the day that HIV infection became more like diabetes.

Now, as Type II diabetes becomes more common, and also stigmatized for its increasingly well-publicized association with fat, the new challenge might be for Type II diabetes to become more like HIV—in which people with the disease and their allies stand up to demand that the society get over its prejudices, and start paying more attention.

In brief: Poz blog carnival, internship preparation

1. The International Carnival of Pozitivities was kind enough to include my AIDS vaccine post in its recent round-up of blog posts related to HIV, AIDS, and especially, living with HIV.

2. I went to pick up my Advanced Cardiac Life Support manual from the hospital. Walking back from getting the ACLS manual, I saw a woman and a man walking in the corridor in the opposite direction; the man was in scrubs and was carrying a portable defibrillator. As they passed me, she said, "So, you're going to do the spiel to the new interns, right?" "Yeah," he said. She said, "That's a big one. Like, 200 MDs."

I thought:
--People are preparing for us showing up, and it's a big event.
...and...
--Ha! She said, "MDs!" She meant us! Ha ha ha! ... oh crap! I realized that other people think of us as doctors, more than they distinguish us from other doctors--even when, as in this case, they understand the distinction between us and other doctors. And that means that I won't be just an intern--I'll actually be a doctor also. Of course I know that the two categories of intern and doctor overlap, with intern completely contained within the larger sphere of doctor. But I've been a sub-intern and I can imagine being an intern. Imagining being a doctor seems harder. Even though, as I remember with a combination of delight and dread from time to time, it's actually the same thing.

Prevention Works still fighting in DC

When I lived in DC, I worked at an immunology lab, and I volunteered for Prevention Works, Washington, DC's beleaguered needle exchange program. Ron Daniels was one of the staff members who was often on the van supervising sessions where I was a volunteer. I did simple work like counting out new needles and giving them out to people, or explaining the basics of the program to new participants, while Ron and others would be talking to people about tougher stuff, like drug treatment options and doing HIV testing.

Ron and people like Ron are incredibly inspiring to me. For anyone who becomes a part of Prevention Works or supports it, needle exchange is a great way to make a difference. But for people like Ron Daniels, needle exchange is not just that; it's also a way of reclaiming the meaning and value of their own lives, and the lives of many other people as well. It's a beautiful thing.

Ron Daniels was recently in the New York Times in an article that gives a little bit of hope that maybe the Democratic Congress will finally take off the obscene funding restrictions that prevent the DC city government from spending its own local tax money on needle exchange. This restriction is not only a terrible piece of public health policy, it's an insult to the people of Washington, DC, who should have a right to make their own political choices. (For more about the wisdom of this choice, check this recent quick .pdf summary of the benefits of needle exchange programs.)

Lots of Washingtonians need what Ron Daniels and the other staff and volunteers of Prevention Point have to give. Please tell your congressional representative to lift the ban on funding. But until the Congress finally gets out of DC's way, I can't think of a better or more effective place to spend your philanthropic dollar. Here's a link to give the money that Republicans from Missouri and Oklahoma won't.

(And thanks to John S. for sending the NYT article around to an email list to which I subscribe.)


video: uploaded on Current TV, a video about Prevention Point's work.

"Far horizons": no AIDS vaccine today

Top: Bill Clinton and Bill Gates, both of whom head foundations which make AIDS a high priority, and also tend to favor technological solutions; since leaving office, Clinton's own choices have suggested more strongly than ever that political expediency drove his AIDS decisions in office. Bottom: George Bush plugs a cord into a prototype hybrid electric-hydrogen car.


Ten years ago today, on May 18th, 1997, President Clinton called on scientists to develop a vaccine to prevent HIV infection, and to do it within ten years:

“My fellow Americans, if the 21st century is to be the century of biology, let us make an AIDS vaccine its first great triumph.”

Clinton compared this presidential goal to President Kennedy’s “moon shot.” But this year, we mark the date knowing that Clinton’s goal was not reached, and won’t be any time soon.

When Clinton made his speech I’d just started working as a community educator for an HIV vaccine research group. The next year, some of my fellow community educators and I started marking the date with media briefings, community forums, and other outreach events. When we started the idea of marking the date each year, public relations people from the National Institute of Allergy and Infectious Diseases resisted it. “We don’t like timelines,” I remember one saying.* No wonder. Vaccine scientists have been saying that an HIV vaccine might be about ten years away for about twenty years now.

I was deeply committed to the cause of HIV vaccine research. (I still am.) At the time, I thought holding the government to a timeline was just fine. What I also knew then, and understand even more clearly now, is that although Clinton’s pledge was inspiring and important, it was also a political dodge.

During the same time that President Clinton was calling for an AIDS vaccine, he was refusing to take leadership to support needle exchange, which he and his scientific advisors knew would prevent HIV infections immediately, and not just ten years from then. And until the end of his administration, he supported international trade rules that made it impossible for poor people living with HIV and AIDS to get generic versions of life-saving medicines.

We can keep supporting the HIV vaccine effort even as we understand that there are more immediate things we can do about AIDS today. But today, let’s mark the anniversary of Clinton’s speech by looking back to another recent presidential call for a new technology:

“I ask you to take a crucial step and protect our environment in ways that generations before us could not have imagined. In this century, the greatest environmental progress will come about not through endless lawsuits or command-and-control regulations, but through technology and innovation. Tonight I'm proposing $1.2 billion in research funding so that America can lead the world in developing clean, hydrogen-powered automobiles.”

That’s George Bush, in his 2003 State of the Union address. He’s making the same gesture that Clinton made in 1997, although with a much less eloquent speech and an even more egregious policy context. In both cases, these presidents made bold calls for new technology that didn’t (and doesn’t) yet exist, as a way of avoiding political choices they didn’t want to make. AIDS means talking about sex and drugs; AIDS means realizing that “free trade” isn’t free. And global warming means making tough changes today, rather than waiting for a hydrogen car to let us keep living the exact same lives we have today but with water vapor coming out the exhaust pipe.

This similarity between the two presidential speeches suggests that this is not a problem of Democrat or Republican tactics: it’s a common mistake in American politics generally.

Bill Clinton’s AIDS vaccine speech was really a more broad-ranging speech about science and technology, made at a black university in the same week that he apologized on behalf of the US government for the Tuskegee Experiment. In his broader discussion of science, two of Clinton's sentences that sound like political throw-away lines turn out to be the key to understanding the whole speech. These two sentences illustrate how Americans get ourselves in trouble when we look to technology to save us from politics:

“We have always believed, with President Thomas Jefferson, that freedom is the first-born daughter of science. With that belief and with willpower, resources, and great national effort, we have always reached our far horizons and set out for new ones.”

Thomas Jefferson or not, nothing about this is true. Freedom is not the daughter of science: science is the daughter of freedom. And as this anniversary reminds us, we actually quite often fail to reach “our far horizons”; and having failed, we sometimes never get around to setting out for new ones. Asking engineers and scientists to solve a political problem with new technology does not require willpower, significant resources, or great national effort; it is an act of avoiding all of the above.

Most of all, when we look to science to bring us freedom from responsibility to make difficult social and political changes, we tarnish the value of science, and the importance of freedom.


______________________

* NIAID now coordinates observances for the day and puts on its own PR effort. The anniversary created its own momentum that was hard for any PR person to resist. And in the absence of startling scientific progress, there was no other regularly predictable news angle for the vaccine development effort.

Abbott protest follow-up: "In a word, yes."

photo of Chicago protest with Thai activist Mai Rewthong speaking, from abbottsgreed.com

Bill Clinton recently endorsed the decision of the Thai government to issue compulsory licenses for pharmaceuticals to be used in the Thai public sector medical system. It was really during Clinton's presidency that a global shift took place about intellectual property rules. As I wrote in my thesis/book-in-progress,

A debate about [global trade rules] came into the open in 1999, while pharmaceutical companies were suing the South African government. They objected to a 1997 law that permitted compulsory licensing for generic versions of patented medicines. In the United States, the Clinton Administration backed the pharmaceutical companies’ position, threatening trade sanctions. And the companies threatened to stop selling drugs in South Africa. When a New York Times reporter asked an industry spokeswoman if that meant they were “literally threatening to let people die if the law stands”, she “hemmed a bit and then answered: ‘In a word, yes.’”

Activist groups started strategizing. In the United States, a coalition of AIDS activists–who later formed the core of a group called Health GAP–began discussing how they could influence American trade policy. In South Africa, a small group of activists, led by the HIV-positive activist Zackie Achmat, had formed the Treatment Action Campaign (TAC) in late 1998.

TAC targeted the pharmaceutical companies and the US government with protests in South Africa, raising the visibility and political risk of the companies’ lawsuit and of US trade policy. In the United States, activists targeted then-vice president Al Gore as he began a run for president. At campaign appearance after campaign appearance, ACT UP activists shouted the slogan “Gore’s Greed Kills!” linking pharmaceutical companies’ contributions to Gore’s campaign with the government’s trade policy.

Gore and the Clinton administration faced a no-win political situation in the making. They started backing away from the fight. The companies kept up their lawsuit, but the activists had isolated them.


It's important to remember this history in the current controversy over Abbott: this fight has been fought (and won) before. Abbott is trying to roll back global trade rules to 1997, at a time when it thinks no one will notice. It's really important that we keep noticing.

I promised an update from the protest. (Links to media coverage are in a post below.) Three Thai AIDS activists accompanied a group of 60-70 student protesters (along with Brook Baker, from Health GAP) to Abbott Labs' facility in Worcester, MA. As a group, we staged a die-in, some activists delivered speeches, and won only slight coverage from the media. (The Worcester media covered it, though, which is more important than it sounds: for local Abbott employees, it's important to know why people are protesting in front of their building.) More coverage came from the Chicago Tribune and others covering the shareholders' meeting the next day; for this more important coverage, the Worcester protest and its many counterparts served mainly as a backdrop to emphasize the theme of a globally-coordinated activist movement opposing this global company.

A small group of UMass medical students, whose school and hospital is right across the street, were the only other med students there. I didn't get a chance to talk to them. They had an array of style choices--scrubs, white coat over jeans, white coat+tie, and so on--reflecting that some had just come over from the hospital while others had come from classes or a day off. "I've got to get back soon," one said to another, "My guy is going to have a thoracentesis to get two liters off." "Two liters?!" After a little bit of "Drugs Cost Pennies! Greed Costs Lives!" he was off.

I got to hang out a little bit with two activists from the Thai Network of People Living with HIV and AIDS, TNP+, including its head, and a woman translating for him (pictured above, ID'ed as Mai Rewthong by abbottsgreed.com; I didn't write down either of their names, to my shame now). They were there with Jon Ungphakorn, a former Thai senator and long-time AIDS activist; the group of three were touring as many of these protest actions as they could. They were in Chicago at the shareholders' meeting the next day.

For my current work as a historian of AIDS activism, the most interesting moment was when someone shouted, "People with AIDS, under attack! What do we do?" and everyone immediately and vigorously responded, "ACT UP! Fight back!" This chant--and ACT UP itself--was invented twenty years ago, before many of the protesters were born. Everyone--Thai activists, college students, med students--felt that it somehow represented them. There are some amazing continuities in the AIDS activist movement, from gay men with AIDS in 1983 to the coalition of people with AIDS and queer activists in ACT UP in 1987 to today's student groups and global groups of people with AIDS.

On the bus back, I found out that many of the Harvard Student Global AIDS Campaign members who were coming to the protest were pre-med students, and I found myself giving pre-med advice to a small group of them during the bus ride. It is more than a little bit startling and disconcerting--but, I think, ultimately inspiring--to find that a number of Harvard pre-meds make it part of their pre-med process to get on a bus and shout "ACT UP! Fight back!" at a pharmaceutical company. Let's hope for more of that in the future. Perhaps one day, the pre-med mantra for getting ready to apply for medical school will be, "grades, MCATs, research, volunteering, going to die-ins."

News on Abbott

Abbott news:
Global news
Excellent BBC online article
Bangkok Post
The Hindu

Our local news
Worcester Telegram
Harvard Crimson

Bad behavior, even compared to other companies, is not new for Abbott
Wall Street Journal investigation of internal documents on Norvir pricing tactics
GMHC article from 2004 detailing Abbott's tactics with ritonavir (Norvir)
AIDSmeds.com article detailing WSJ findings on Abbott internal strategies

...to be updated.

Hi Fleishman Hillard! Hi! Your client is killing people with AIDS! Thanks for stopping by!

You know what I love?

StatCounter.

You know why I love StatCounter?

Because it told me that someone from Fleishman Hillard, a PR firm that represents Abbott, was doing an internet search with the key words "Abbott Kaletra" and landed on... my dumb blog post about what I was going to wear to the protest, which I'll write about more in the next day or so.

Now, that makes me feel stupid because it would have been nicer if that Fleishman Hillard intern landed on a post that said something like... something like the title of THIS post. Or at least, something that wasn't my little throwaway observations about the semiotics of hospital fashion when protesting. How embarrassing is that?

So, now I've got my post title all set up for tomorrow, which I hope will bring another blog search from the good folks over there at Fleishman Hillard. And maybe, just maybe, a low-level PR employee will take a moment to wonder... is this really the work that represents who I am as a human being? Am I really being the best person I can be today?

Or, more likely, just glance at this and be annoyed that they have to enter the link into some Excel spreadsheet that indexes "Blog Mentions: Positive" "Blog Mentions: Negative" "Blog Mentions: Mixed."

Pic: Abbott CEO Miles White

White coats at protests? Maybe not.

Photo: Treatment Action Campaign and Student Global AIDS Campaign protesters at last year's International AIDS Conference, part of a coalition opposing Abbott Laboratories' approach to access to AIDS drugs.

I'm going to be taking part in a global day of action to condemn Abbott Laboratories for their attempt to block compulsory licensing of one of their AIDS drugs, known in the United States as Kaletra. This is an important medicine for people with AIDS, and Thailand wants to produce generic versions of it for impoverished people living with HIV and AIDS, who could not otherwise afford it.

The Bangkok Post has an editorial which lays out the legal issue from a Thai point of view. This one is pretty stark: Abbott is deliberately trying to roll back agreements about international trade rules, because the company doesn't like them.

There's more to say about Abbott, but I'll save that for now. In the meantime, I am now wrestling with a less important problem familiar to all 4 or 5 regular Hemodynamics readers, and a problem that afflicts all casual activists who only attend protests now and then: what to wear.

On its face, this is a silly thing to spend much time worrying over. But protests in the television age, and even more so in the digital image age, require careful attention to symbolism. And it turns out that as a future doctor I've got a lot of symbolism to think carefully about.

Medical students have often worn white coats to protests, as have doctors. This is a way of bringing professional credibility as a form of solidarity. But I've never done this, and though I thought about it earlier this evening, I don't think I will this time either.

This particular issue is fairly clear: when people don't get medicines to treat HIV, they often die of AIDS. Incredibly enough, and despite everything bad you can say about an organization like the World Trade Organization, nations around the world have agreed on ways that countries can make sure people get medicines. If you want to reap the benefits of global capitalism you should at least play by its very limited rules.

This message does not require a white coat for its credibility.

To say that you should listen to my views about intellectual property policy because I'm going to be a doctor would be absurd. After all, so many other doctors have been so egregiously wrong about this kind of issue that I would hate to encourage people to listen to doctors about patent policy. As far as the embroidery on my white coat, it says "Harvard Medical School" and it doesn't say my name. And I don't believe there's anything about my Harvard Medical School education that makes me any more equipped than any other reasonably well-informed person to express my opinion about Abbott's approach to intellectual property. All I know now that I didn't know before is the details of how people die from lack of medicines, and what happens to their various organ systems as they get more ill.

You could argue that wearing the white coat is a kind of threat to Abbott, along the lines of the anti-Abbott coalition's suggestions for doctors that they prescribe equivalent generics instead of Abbott products, refuse to talk to Abbott drug reps, and refuse to accept gifts from Abbott reps. But for me, this would not be sending the right message: whether or not Abbott cares about Thai people living with HIV and AIDS, I will prescribe generics when I can, I won't talk to drug reps, and I won't accept gifts. If I was the kind of doctor who was actually thoughtlessly prescribing unneeded overpriced brand name drugs and getting chummy with drug reps, I probably wouldn't be going to a protest at Abbott headquarters anyway.

Another entirely opposite direction would be the Treatment Action Campaign's "HIV Positive" t-shirt. But I've always felt that this shirt has a different meaning in the United States than it does in South Africa, and it definitely means something different when worn by groups of people which do not include many people living with HIV. In the US, the meaning of this shirt can be helpful but it can also be presumptuous; tomorrow, at least, I'm not taking this approach.

The only visual signal I might feel comfortable displaying is letting people know that I am a health worker--someone who makes it their life's work to care about the well-being of people who are sick. I'm uncertain about the political value of that gesture, but I think that at least it is a visual reminder that the protest is an issue of health, and survival, and not just an issue of market rules.

In other words, I've reduced my protest wardrobe to two alternatives: I can either dress as just me, a concerned citizen--or I can dress as a health worker. Considering the health worker option, I realized once again that if I take this route, I would not wear the clothes of the profession (the white coat), but of the hospital and all who work on its clinical floors: I would wear scrubs.

AAC bloggers have a job waiting for me...

The AIDS Action Committee of Boston now has a blog with updates on policy issues and perspectives on various AIDS and service issues. Recently this post made me feel like my instincts about what people living with HIV are looking for in their medical care are at least headed in the right direction... and this post reminded me that the difference between a thoughtful doctor and a thoughtless one makes a huge difference to some of the folks I hope will be my patients.

What makes me feel good about both of these posts is the feeling that people are writing a job description for me that I'm eager to fill.

It's the person, stupid.

This post has been modified since its original posting. See end of post.
When I was choosing a residency, I decided to choose one where HIV care was part of their primary care program, supported by specialists, rather than exclusively part of a specialty clinic. This factor was actually far and away the biggest determinant of my choice, and I think studying the history of AIDS was part of what convinced me of the importance of the distinction.

Over the long run, scientists who worked on antiretrovirals to target HIV's replication were correct in their ultimate goals. It's this strain of HIV research and clinical strategy that gave us Highly Active Antiretroviral Therapy (HAART). And HAART dramatically increased survival times. But for a long time, antiretroviral
drugs were actually accomplishing little other than temporary improvements in immune cell counts.

Until 1996, the biggest gains were made in thinking about how to better prevent and treat opportunistic infections and other problems of HIV and AIDS. Paradoxically, for some time, it was doctors like Joseph Sonnabend and activists like Michael Callen (the picture above is of Callen), who did not believe that HIV caused AIDS, who probably provided some of the best clinical advice for most of the 1980s.

For people who were focused on the virus, it seemed like madness to avoid a drug like AZT when it first came out. It had demonstrated activity against the virus and people who took it often had rises in their CD4 counts (the cell marker that serves as a main indicator of immune health in people living with HIV). But AZT gave people sometimes severe anemia, as well as other problems like sometimes intolerable nausea. That was especially true at the high doses which AZT partisans initially recommended. Worst of all, it turned out that giving AZT alone really didn't give a clear survival advantage. (The debate about how much time it bought for some people, and at what cost, was never really resolved.)

In other words, in the 1980s, people like Sonnabend and Callen were scientifically wrong, but clinically right. And people who emphasized antivirals over all else – pushing high-dose AZT and not attending aggressively enough to opportunistic infections and other issues of immune well-being – were scientifically right, at least in the narrow sense, but clinically wrong.

The people who thought about AIDS research in a hyper-reductionist way did later win big gains for people with AIDS. In fact, they eventually transformed the epidemic. (Sonnabend now presecribes HAART and concedes the point of HIV's importance.)

But in the meantime, until 1996 or so, I think people with AIDS were probably usually served best by clinicians who started from observable clinical problems (opportunistic infections, immune collapse, and the personal issues that made it difficult for people to care for their health) and worked their way in. That was different from clinicians who started with the virus and worked their way out. Starting from observable clinical problems yielded better results than focusing on a theoretical model of the disease and treating the clinical problems as mere signals and stages of that model.

And that's despite the fact that the theoretical model was essentially correct.

At the triumphalist moment of the world AIDS conference in Vancouver in 1996, protease inhibitor maven Dr. David Ho started a presentation with the slide "It's the virus, stupid." This was the picture of a previously-frustrated reductionist slam-dunking his opponents. Ho had actually told Science reporter Jon Cohen that he was making a button with this slogan in 1993, but Vancouver was the moment of victory.

At the Vancouver conference, after a decade of developing antiretroviral drugs with essentially no impact on survival time, the virologists could finally claim the unequivocal success they'd been waiting for. The skeptics of the Callen and Sonnabend school finally had to admit that there was a direct relationship between the virus and the disease. (Denialists of the Duesberg school and its like have never been swayed by evidence, and the mounting evidence that proves them wrong has only made them stronger.)

But if Ho and other virologists were right about the value of targeting the virus from a variety of angles through combination therapy, they were wrong about what the target of AIDS therapy should be.

The point of HIV medicine is not HIV. The point of HIV medicine is people living with HIV.

On first blush that sounds like one of those cloying "humanism in medicine" truisms. But I've started thinking it's worth stating, forcefully.

I thought a lot about this when I was interviewing for a residency spot in internal medicine. I'm planning to be a primary care doctor with an emphasis on HIV. That's a different path than many HIV doctors take these days, particularly in my city, where an academic specialist-driven model is more prominent. (This really varies city-by-city, depending on what powerful people got behind which model.)

I still may end up getting training as an infectious disease specialist just because it will be practical to do so: to get the HIV training, I'll spend a year doing general hospital ID, doing consults on surgical wound infections, even knowing that this part of the specialty has almost nothing to do with HIV care.

There are also year-long HIV fellowships which train especially for HIV care; that's a more likely path for me. HIV medicine is not for the faint-of-heart; it's technically tough and full of insider jargon, so it's worth thinking of it as a specialized area of knowledge. But is that specialized area of medicine really more related to surgical wound infections than it is to heroin addiction, liver failure and vascular disease? I think it's not, and that's why I've chosen to think of HIV medicine, and my training for it, as part of primary care, not as a branch of infectious diseases.

In fact, we might ask: is the virus actually the biggest problem of people with HIV these days? In the United States, the phenomenal success of the HIV reductionists has created its own problems. People with HIV are starting to have cardiovascular and metabolic complications which are often still poorly understood. Some are the result of living for a long time with the virus itself. Others are the result of taking anti-HIV medicines for a long time.

It's not clear how much this will contribute to problems like heart attacks and stroke and diabetes, but a lot of folks think these will be bigger problems for people with HIV in the coming years. Plus, some of the people most at risk for HIV – people of color in poor neighborhoods – are also independently at higher risk for problems like diabetes and vascular disease, as well as other problems like addiction, social disruption and violence.

People with HIV still have all the challenges of taking medicines every day that they've always had. It's difficult for anyone to pull it off, no matter what their social circumstances. Addiction and poverty bring extra barriers. And for immigrants, language and discriminatory health access policies often make taking control of one's own medical care more difficult. The people who are hit hardest by the HIV epidemic in the United States are often people who also have significant problems other than HIV. And no matter how snazzy a doctor gets in prescribing drug combinations to get around the latest resistance mutation, the person living with HIV is the one who has to take the medicine every day.

In other words, many of the toughest challenges for people with HIV are once again challenges that are only indirectly related to the virus itself. These are primary care problems: How do people make their medical regimens a part of their lives? How do people reduce their risk for chronic problems like diabetes? How do you balance the benefit of medicines for one problem, versus the other problems they create? (And for that matter, one might very well ask, how can people with HIV live happy lives that are not entirely dominated by health concerns? but that is another story.)

The fact that infectious disease specialists are often the doctors responsible for HIV care is not inevitable. In fact, at the beginning of the epidemic, many ID doctors shied away from AIDS, as did many academic medical centers. The most academic of academic medical centers often avoided taking on much AIDS care in the early days of the epidemic. Their ID departments focused on other things. Perhaps coincidentally, but probably not, when big money started flowing in for AIDS research, they all started taking the epidemic seriously – hiring researchers and building up more serious clinical programs. But this approach didn't take the agendas of people with HIV as a starting point. It was built around the idea that AIDS was a problem caused by a virus, and that specialists in infectious agents should be the ones who provided HIV care.

There is an important difference in how different doctors think about the goal of HIV care. I think that a primary care model of HIV care is important not just because it's nicer or more medical-humanities-groovy; it's important because it is targeting the issues that are actually most clearly facing people with HIV. How do I live with these medications? How do I keep taking them? how do I live with the side effects? And how do I take care of my health beyond HIV? The success of the antiviral agenda has created a situation where we can generally take it for granted that we can knock down the virus that replicates inside people, but only if the person with the virus is able to commit to the effort to treat it, and only if other things don't kill that person first.

In other words, David Ho was wrong: It's the person, stupid.

Two post-scripts: I should add that even from the basic science point of view, the idea that "it's the virus, stupid" is disputed by HIV researchers who look at AIDS from the immune system's point of view. They point out that immune damage associated with HIV infection is partly caused by the immune response to the virus itself, and that the specific interaction of virus and immune system is more important than simply how much virus is present. See this paper and this erudite old-style medical journal commentary for more from the immunologists.

The second post-script: Looking at retrospective data for survival time it appears that using one antiretroviral like AZT in the late 1980s did not do anything for survival, but using two in people who had not taken one of them before did lengthen survival time somewhat. So, in hindsight, Callen and Sonnabend's particular kind of advice may have been less effective starting at some point in the early-to-mid-1990s, before 1996, when other drugs like AZT came out and could be used in combination with AZT.