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The Cure: We Get What We Demand

October 2003

A note from Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Much of the history of AIDS treatment activism can be traced back to a call for something -- anything -- that might change the course of HIV infection. In those early days, people typically lived only six months to a year beyond their initial diagnosis with HIV. Given such a meager outlook, people were more than happy to see the development of the first drugs that extended life for six months.

Roughly a decade later, with the arrival of protease inhibitors and three-drug combination therapy, treatment offered years of extended life. But rumblings soon followed about how difficult these therapies were to take -- this one is six pills three times a day, this can't be taken with food, this must be taken with food, and these can never be taken at the same time. AIDS activists and people living with HIV then demanded simpler therapies and that's what we got -- many once daily regimens in the works, drugs with fewer side effects and lower pill counts. Most regimens now are much easier to take.

After all these years, however, we remain in a place of suboptimal anti-HIV therapy options. The development and availability of these "inadequate" therapies have probably taken the pressure off the urgency and search for a cure. While therapies today are far better than those even a decade ago, anything short of a cure is suboptimal.

A decade ago there were three anti-HIV drugs approved. Now there are over 20, along with more sophisticated tools for monitoring one's health. More drugs are in the pipeline, including a new class called entry inhibitors, featured in PI Perspective 35. There are also entirely new anti-HIV approaches in the pipeline such as RNAi. Several new drugs have recently been approved. More tools for monitoring health and anti-HIV therapy are on the way, such as therapeutic drug monitoring (see PI Perspective 33). New insights into how the immune system and HIV interact have led to new directions in research. These range from ways to "flush" the reservoir of HIV-infected cells to immune restoration with human growth hormone.

Yet, as the arsenal of new drugs and strategies increases, it's easy to wonder whether each new drug promises only minor advances or if real progress is being made toward a cure. The question becomes ever more ominous as even the word cure now seems absent from the vocabulary of many AIDS activists, scientists and community leaders. Minor advances should not be dismissed, because until there's a cure they are certainly needed and welcomed. While these advances are merely incremental, they are advances and that is progress. What they are not, however, is enough.

Just how close or far away is a cure for AIDS? When will there be a cure for AIDS? The simplest answer is that we're as close as we are far away. The cure might be being identified this very moment, in a laboratory somewhere, and it's possible that the scientist doesn't even wholly know what she or he is looking at. It's possible that realizing a cure for AIDS will be a laborious process, taking years to identify, research and refine. It's likely that a real cure won't be a simple pill or medicine, but rather a complex process that ultimately rids the body of HIV or renders this virus harmless. Regardless of the case, there are a few things that are likely true. One is that we get what we demand. The other is that we simply do not have enough information to be pessimistic.

The demand for a cure needs to be put back into the community's lexicon. We must reclaim it and hold our leaders, activists, doctors, researchers and the bureaucracies that govern research priorities accountable for making it the goal. History shows that people living with HIV hold an incredible amount of power, even when the odds are stacked against them. People living with HIV and their advocates have changed the system that evaluates and approves new drugs, created mechanisms for earlier access to experimental therapies and continue to influence the conduct of research at nearly every level. These changes are revolutionary, but they are also not enough. They are a start and they're a great start. We have further to go.

There are more activist issues to work on than ever before. The current administration hasn't been friendly to AIDS, either for research or for programs that serve people living with HIV/AIDS. More voices are needed in the fight for the full spectrum of programs that serve people's needs. The use of newer anti-HIV drugs has left a wake of unanswered questions about side effects and strategies on how best to use them. (The next issue of PI Perspective will be dedicated to examining strategies.) How drugs interact, how they work in different populations, and how drug pricing is impacting healthcare costs and services are all much more complicated today than just ten years ago. The number of activists, however, has not grown proportionally with the number of issues.

There are challenges for all involved in the pursuit of a cure that we must acknowledge, address and overcome. As time has passed, many have grown weary. For those living with HIV, the draining effects of struggling to manage their health, grief and loss cannot be overstated. For the tenacious activists pushing the boundaries of science toward a cure, the years are scattered with failures. For some activists, even the word cure evokes a sense of failure or embarrassment that there was ever hope for a cure.

Similarly, many researchers have settled into their careers, wrapping themselves in the minutia of studies that lack creativity and inspiration and lead nowhere. Pessimistic scientists stuck in the belief that people can never get rid of a virus need to be reminded of the folly of the word never. It's staggering to reflect upon how many nevers have been achieved through inspired scientific pursuit. Many skeptical scientists contended that humans would never fly or walk on the moon and the idea of a heart transplant was pure blasphemy. These nevers are now simply part of the legacy of scientific progress.

As the pandemic now spans generations, newly infected young people don't have the knowledge or experience of a world without AIDS as a touchstone. They do not know what has been taken from them. Many are crippled by a belief that they should have known better or that somehow they deserve HIV infection. The newly infected must find their courage and their voice and they have every right to stand shoulder-to-shoulder in the fight to live in a world without AIDS. And this includes the courage to demand and participate in the groundbreaking research that will lead to a cure for AIDS.

It's time to reinvigorate the search for the cure among ourselves, and inspire others who have not known a world without AIDS to realize that a cure is possible. In the 1980s and 1990s, a large part of the AIDS activist movement was formed and galvanized around the notion of being united in anger to end the AIDS crisis -- ordinary people angry that partners, friends and children were shunned, denied care and dignity. Great things were accomplished as a result of this motivated, focused anger. Today, there is still one huge reason to be angry: more people than ever before are living with HIV/AIDS. In many places, people are still dying shunned, alone and without medical care or medication. Anger can still be a motivator to action, but it likely cannot sustain a movement for the long-haul. What do you have to live for? The diverse answers to this question are the foundation of a sustainable movement. As we take inventory of what we have to live for and use it as the basis to inspire and motivate us, we can create a movement with room for compassion, grieving, healing, anger and visions of our lives, our futures and our communities in a world without AIDS.

Scientific breakthroughs in understanding HIV occur on a near daily basis. Understanding, however, must be turned into action and focused on curing AIDS, not just knowing everything imaginable about it. The biological mechanisms of the polio virus, for example, were not understood until decades after the disease was all but eliminated. The community is needed in the scientific process to press the urgency of bringing sometimes disparate discoveries together and turning ideas into areas of therapeutic exploration. This is happening right now with pushing the research of new classes of drugs, like entry inhibitors. Hundreds of threads of discovery are left dangling, however. One of those threads may well be the path to the cure.

For those who give up hope for a cure and for those who don't believe it will come in their lifetime, there are simply no data or objective facts that support those beliefs. What is true is that the possibility of a cure for AIDS exists today and it's our challenge to help find it. This does not mean that everything under the sun needs to be researched, but rather a strategic plan to research and eliminate viable possibilities needs to be devised and pursued.

For some, current therapies may actually be enough to lead to full life spans. Most people's therapy fails over time, however. People continue to die of AIDS, and more find themselves in a place where the drug arsenal simply isn't good enough or can't be tolerated indefinitely. No matter how well therapies work for some they can dominate a person's life, leaving one less secure to count on themselves and pursue visions of their lives and their own futures. The goal must be a cure.

There is no reason to believe the future holds anything other than continued progress. History also shows us involving people with HIV/AIDS in the process speeds its progress. If what we demand is a cure for AIDS, then there's no reason to believe we won't get there.

Project Inform has taken up this challenge. This year we've renewed our commitment not to focus our attention on "me too" drugs, new versions of the same therapies that promise only incremental advances. We will increase our focus on research reform to remove barriers to testing innovative therapy approaches and reinvigorate efforts on projects that will advance science toward a cure.

We will also raise the issue of a cure at every scientific conference and venue where we have a presence. We invite you to come along with us in the fight for a cure, and we support you in finding your own path. If you would like a list of things you can do to help in the fight for a cure, email

Our history shows us that a few people can make a vast difference. More people can make an even greater difference. So how do we ensure that a cure be realized today as opposed to tomorrow -- this year rather than next? The first step is believing that we can make a difference, or at least suspending a belief that we cannot, and finding our voice and simply trying. There is no harm in trying -- there is merely the possibility of success or the possibility of failure. But it leaves us no worse off than yesterday. Change will never happen without first finding the will and courage to make it happen.

Back to the Project Inform Perspective October 2003 contents page.

A note from Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by Project Inform. It is a part of the publication Project Inform Perspective. Visit Project Inform's website to find out more about their activities, publications and services.
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