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What You Need to Know About HIV Cure Activism
An Interview With Activist Stephen LeBlanc

By Nelson Vergel

August 8, 2012

Stephen Leblanc, Kate Krauss (fellow activist), Dr. Paula Cannon and Dr. John Zaia (cure researchers).

Stephen Leblanc, Kate Krauss (fellow activist), Dr. Paula Cannon and Dr. John Zaia (cure researchers).

Much like it happened during the 1980s and '90s, a new kind of activism is emerging in the fight against HIV. As newer HIV antiretrovirals have helped many regain their health, several activists are not relaxing about their work.

A shift in paradigm occurred when the research world accepted the fact that the "Berlin Patient" was cured of HIV. This shift has also fueled a resurgence of activism that very few people living with HIV are aware of. One of the activists who has been advocating for a cure for HIV even before it became an "accepted" word in the research world is Stephen LeBlanc. Stephen, a 20-plus-year HIV survivor and patent attorney, was kind enough to agree to be interviewed for TheBody.com to let us all know how we can join the new wave of activism that will lead to a faster HIV cure.

Stephen, can you tell us a little bit about your experience in HIV activism for the folks who do not know you?

I have been an LGBT community activist since I came out in 1982, at age 20. When I lived in Boston, I worked to pass the Massachusetts Lesbian Gay Civil Rights Law and worked on a number of anti-hate/violence projects. In 1995, I joined ACT UP Golden Gate in San Francisco and became an AIDS Treatment Activist. I worked on making treatments for wasting syndrome and opportunistic infections available before we had effective antiretrovirals. I worked on campaigns for early access to protease inhibitors and for use of protease inhibitors in powerful combinations before combination therapy was widely accepted as critical.

What is the AIDS Policy Project and what makes it different than other advocacy organizations?

The AIDS Policy Project is an organization started by long-time AIDS activists and people with AIDS to focus exclusively on changing the research climate and funding priorities to developing an actual cure for HIV. At the time we started working on this campaign, in 2009, the word "cure" was generally unacceptable to use in AIDS research or policy circles. In our initial research, we learned that less that 3 percent of the NIH AIDS research budget (about $60 million dollars out of a $1.5 billion dollar research budget) was going towards finding a cure. While prevention and improving AIDS treatment access remains critically important, as an organization we believe that ensuring that appropriate resources are directed to cure research is vitally important to the 33.3 million people living with HIV in the world and to ending the AIDS pandemic.

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Some readers believe that the cure of AIDS is already available but it has been withheld by companies who want to sell HIV drugs. What can you tell them to clarify this?

I certainly understand the skepticism many people have about the drug companies. In my own experience, the scientists who work at these companies are relatively open about their research and honest. They also have many interactions with scientists in academia and with community activists who are scientifically literate. Even if someone believes that the drug companies are corrupt, the scientists who work there mostly are not and are in relatively constant communication with other scientists.

As a community activist with a scientific background, I have some understanding of why HIV is so difficult to cure. Important human viruses general fall into two categories: (1) those from which some people naturally recover and are then immune from re-infection, and (2) those that generally never naturally cause people to become immune and can cause persistent infection. Scientists have substantially reduced, and in one case eliminated, many of the first types of virus that were major killers (Smallpox, Whooping cough, Measles, Polio, Diphtheria) through vaccines. In these cases, scientists have repeatedly stepped forward to cure or eliminate diseases that it might have been more profitable to chronically treat. There really is no evidence that any drug or treatment has been "held back" from the world at large in order to increase profits.

Both the HIV cure and the HIV vaccine are very hard to develop because of the nature of HIV infection. As for the cure, any of your readers can read the hundreds of scientific papers discussing and documenting that HIV can hide silently in cells in the body for many, many years (possibly a lifetime) even in patients with undetectable viral load. Scientists do not yet know how to identify or eliminate these cells. This simply is a fundamentally hard problem. No one knows for sure what a cure would even look like (almost certainly not just a pill you take for 10 days). So, the idea that someone has a cure available but just is not bringing it forward does not make much sense to me.

The more important issue is whether industry or the government will want to spend the hundreds of millions, even billions, of dollars that developing a cure is likely to cost. The amount of money devoted to this research is increasing, but not nearly fast enough and not to the levels necessary.

What do you think are the main advocacy efforts that we as people living with HIV need to work on to advance HIV cure research?

More money, more money, more money! More collaboration and sharing of data between researchers! More ideas being pursued! More openness to new ideas!

Researchers want to work in fields where they can make a difference and make a decent career. Both of those require money. New medical technologies are being developed every year. One of them, or some combination of them, might lead to a cure. But we need hundreds of researchers around the world working on HIV cure research to make sure that as new technologies come online they are applied as appropriate to possible cure therapies. There are not nearly enough researchers working in the field now.

Patients also need to educate themselves and one another about cure research and be present in the rooms when cure research is being discussed and decisions about funding and other issues are being made. Crixivan (the first very successful protease inhibitor) happened in part because ACT UP New York activist Bill Bahlman was in the room with Merck researchers (including Emilio Emini) when initial setbacks happened. The researchers were dejected, but Bill told them to dust off and keep at it. Bill Bahlman was there because there were AIDS activists across the nation following almost every possible AIDS treatment being developed. We have a very small handful of people doing work like that today. We could use many more.

Do you think there is politics within the research community that could impede progress towards the cure for HIV?

Within every community, from Congress to your neighborhood book club, there are politics that resist change and outside ideas. HIV research, for understandable reasons, has been dominated by virologists, small molecule drug manufacturers, and vaccine specialists. Most of the funders, most of the people reviewing grants and scientific papers, all come from these fields.

Stephen Leblanc giving an award to Dr. Gero Hütter (the doctor who cured Timothy Brown).

Stephen Leblanc giving an award to Dr. Gero Hütter (the doctor who cured Timothy Brown).

The first person cured of HIV, Timothy Brown, was cured by a cancer doctor with no previous HIV experience, using a cellular transplant therapy. This happened entirely outside of the multi-billion dollar international AIDS research community and was accomplished by a 38-year-old German hematologist-oncologist who had never treated a person with HIV before. I do believe that cure strategies unfamiliar to those who have been working in HIV for decades, like genetic therapies and cellular therapies, receive more skepticism and less support and funding than they should.

I also think there is a bias for strategies that people can immediately envision being made available to all 33.3 million people with HIV. For example, a theoretical $100,000 cure based on genetic engineering and cellular transplant would initially be available mostly in the developed world. But, that makes it no less important to develop now. The $25,000 annual antivirals used in the United States are now being made available in the poorest countries for $135 per year. Also, a $100,000 cure in the developed world would save at least hundreds of thousands of lives and free up AIDS treatment resources that could the be used in the developing world.

Winstone Zulu, an amazing African AIDS activist and PWA who died in 2011, was a huge supporter of the AIDS Policy Project and was unambiguous is saying "Yes, yes, yes. We badly need a cure. Why is all the important research on treatments, vaccines and microbicides? What about me who is already infected? ... Time for a cure!"

We have recently seen some news about Timothy Brown, the Berlin Patient, that hinted at the fact that he may not be cured or that he may have been reinfected. Can you tell us what is behind that story?

Timothy is such a hero for people who care about a cure for AIDS. After going through extreme tragedy and stress in his life (becoming HIV positive and living with HIV for years, then being diagnosed with terminal, rapid-onset leukemia at age 38, then suffering a horrible mugging in Berlin), he has for the last several years been extremely cooperative in I believe every research project he has been asked to participate in, including giving lots of blood, doing all kinds of tissue biopsies, flying to research sites in different parts of the country.

He clearly has been and remains cured in terms of having no viral load, taking no anti-HIV medicines for five years, and having normal CD4 cell counts.

However, researchers wanted to know if they could detect any virus anywhere in his body. No one found whole virus or replicating "live" virus, despite looking for that. However, some labs, using ultra-sensitive DNA testing, detected fragments of HIV that they announced were different from the HIV DNA that Timothy had been infected with. Preliminary results of this research were presented in a session at the International Workshop on HIV & Hepatitis Virus Resistance and Curative Strategies in Sitges, Spain, in June. The researchers who presented the data, and many, many scientists, suggested that false signals or contamination were likely sources of some or all of the HIV signals found. This is a known and common problem with ultra-sensitive DNA tests.

One attendee of the conference, however, decided to issue a press release based on this presentation and substitute his own conclusions for those of the scientists who did the work. His press release was both very unusual and highly unethical. First off, it is bad form to issue a press release about another scientist's preliminary research results. Generally, you allow the initial researcher to release their own data, and then you discuss or critique or criticize or refute it. Secondly, the attendee added a sensational conclusion to the press release that none of the researchers involved agreed with, that Timothy still showed signs of active infection. Finally, the attendees stated that Timothy might have been reinfected, which is wild speculation contradicted by the data presented, and that tests were being done to see if Timothy could infect others, which is false. The tests were done. There is no evidence of replication competent virus in Timothy.

I know it may sound obvious, but why do we need a cure with so many effective HIV medications?

Providing complex, daily, life-long treatment to the 33 plus million HIV-positive people in the world is unsustainable and likely unattainable. Many, many people with HIV, perhaps the majority, do not live lives that allow them to get and take the treatment they needed every day. A cure, even if it were somewhat complex, would be possible to implement for many people who could not reasonably get access to daily treatment for the rest of their lives. Aside from being expensive, and hard to take and acquire according to the necessary schedule, the drugs are somewhat toxic and have unacceptable side effects for many people. A cure will bring hope to people with HIV. A cure will be more effective. A cure is a sustainable end to the AIDS pandemic and in the long run will be cheaper than lifelong daily HIV drugs.

Winstone Zulu died in 2011 in part because he could not get consistent access to treatment. In one of his last writings, he explained: "Without a cure it is death for many of us. I have been on treatment since 1996 and I am currently on one of the most expensive and inaccessible regimens in Zambia. And yet I am still having problems with AIDS. We face perennial stock-outs of anti-retroviral drugs in several towns and cities of Zambia, including Lusaka. It is very clear that under this scenario even the argument that treatment is prevention is not possible. If drugs can run out in the capital city of a country, it is not difficult to imagine the horror in the rural and difficult-to-reach parts of the country."

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If we find a cure, how much do you think it will cost? Will it be affordable to the developing world? How can we ensure that there is access for all when in fact we have limited access to ARVs 31 years into the epidemic?

That is not really possible to say, but costs of various cellular modification and transplant techniques that might lead to a cure have been estimated by scientists and companies doing the research to cost today anywhere from about $40,000 to $100,000. While high, it is extremely cost effective when compared to the price of annual AIDS medications and care in the United States. Cancer chemotherapy, which is another rough model for what some types of possible cures might look like in terms of complexity and duration, has costs often around $5,000 to $30,000 but can range up much higher. So, while it is impossible to say what a cure might cost when we have limited ideas of what a cure will be in the end, with the technologies that today appear most promising or most of interest, an initial cure therapy might cost less than $100,000. In contrast, the lifelong cost of treatment for HIV/AIDS in the U.S. is at least $600,000.

India and Brazil have gene therapy labs and currently conduct gene therapy research in conjunction with U.S. scientists. In the future, these countries could be expected to make some similar cure therapies available much cheaper than in the richest countries.When procedures are scaled up, or automated, even complex cellular cures might be doable for under $25,000.

This is also without considering the enthusiasm in less-developed countries, such as China, India and Brazil, for developing stem cell therapies and cellular therapies in their own countries. These countries could be expected to make similar cure therapies, once demonstrated effective, available much cheaper than in the richest countries.

What can readers do now to help?

Schedule small meetings with your members of Congress (yourself, the head of a local AIDS NGO and an AIDS physician) and educate them about what is going on with the research and the need for more funding. The AIDS Policy Project is calling for $240 million in new money for cure research -- still just a fraction of the money being spent in other areas of AIDS research. Support groups like the AIDS Policy Project that are working to increase cure research funding and spur innovation. Become an AIDS Cure activist. Educate yourself about the different approaches being investigated. Go to our website, www.aidspolicyproject.org, for more information AND to make a financial contribution if at all possible. Like us on Facebook. Read the AIDS Policy Project's report, "AIDS Cure Research for Everyone: A Beginner's Guide to How It's Going and Who's Paying for It."

Stephen, thank you so much for helping us open our eyes to how we all can help move the HIV research agenda forward. There is a lot of work to be done and I hope that people get involved.




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