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Isn't It Ironic? More Musings from Paul Kawata

By Paul A. Kawata

July 18, 2011

This article was provided by the National Minority AIDS Council; Paul Kawata is the organization's executive director.

Wouldn't it be ironic if People with AIDS (PWAs) were the reason we stopped the epidemic?! After all of the blame, all of the discrimination, all of the judgment, there is something quite wonderful about the prospect of PWAs bringing an end to this devastating disease.

Isn't It Ironic? More Musings from Paul Kawata

At the 6th International Conference on HIV Pathogenesis, Treatment and Prevention, you can feel the excitement as people talk about HIV Prevention Trial Network study 052 or Treatment As Prevention (TAP). At a panel this afternoon, a researcher called it the "light at the end of the tunnel."

TAP is about lowering a community's viral load to stop the spread of HIV/AIDS. It's about getting PWAs to an undetectable viral load as a way to support their individual health and end this epidemic. It's not without challenges, but as one of the speakers said "we may be at the beginning of the end." However, it's going to take PWAs leading the way.


There is something so perfect about this solution. Not only could it stop the epidemic, but it would also benefit individuals living with HIV/AIDS. Researchers also say the solution isn't just for wealthy countries. Treatment As Prevention should be a global goal. With the recent United Nations' commitment to provide HIV treatment to 15 million people by 2015, we may be able to end this epidemic in my lifetime.

However, it's not time to throw away behavioral interventions. The HIV community and researchers mostly agree that it's going to take a combination of approaches. We need to implement structural interventions like TAP and continue with proven behavioral interventions. However, these behavioral interventions need to be scaled up to impact large numbers. We're not talking hundreds of people; these interventions need to impact thousands, if not millions of people.

If I sound ecstatic, I am. However, we are years, if not decades away from solving this epidemic. This solution will require PWAs to be on drug therapy for the rest of their lives or until we find a cure. We still have to figure out how we are going to pay for treatment for millions of people around the world.

In the U.S., we need to

  • Identify HIV positive Americans who do not know they are HIV positive;
  • Upon diagnoses, link these individuals into care as quickly as possible; and
  • Ultimately, get HIV positive Americans on drug therapy and keep them on it.

At the end of 2008, the CDC estimated there were 1,178,350 Americans living with HIV. Approximately 236,400 people in the U.S. do not know they are HIV positive. Unfortunately, the majority of people living with HIV are not on drug therapy. In fact, the number is somewhere between 250,000 to 350,000 Americans who are currently on Antiretroviral Therapy (ART).

Researchers postulate that there is a benefit for individuals who can bring their viral load to undetectable soon after being infected. It is the time that the virus can do the most damage to your immune system. This is also the time when people are the most infectious and can pass the virus to others. Getting to undetectable viral load early can minimize the damage to the individual and stop the spread of HIV. However, more studies will need to be done.

It's no longer just about the individual, it is also up to PWAs to save their communities. This is a huge shift in our work. Before, we were talking about empowering PWAs -- now we're asking them to save us. That's why they need to lead this effort.

Given the uncertainty of the effects of long-term drug therapy, we may be asking PWAs to put their health on the line. They have reason to be skeptical. But maybe, just maybe, the leadership of people facing the same risks, with the same concerns, displaying the same willingness to risk it all to save their communities, will alleviate some of that skepticism. At the same time, the HIV community must continue to push a research agenda to ensure the long term safety of these drugs, the development of new medications, as well as a viral load test that is rapid and affordable. We must also remain committed to finding a vaccine and a cure for HIV/AIDS.

So how are we going to pay for the drug therapy necessary to stop this epidemic? We can't even get the funds to cover the 8,689* Americans currently on AIDS Drug Assistance Program (ADAP) waiting lists. From my perspective, we need to do the following:

  1. Between now and 2014, ask the pharmaceutical industry to keep their patient assistance programs open for people who cannot get their drugs via private insurance, Medicaid or ADAP.
  2. Enroll HIV positive Americans into PCIPs (Pre-existing Condition Insurance Plans). Depending upon the state, we may be able to use Ryan White funds to pay for the premiums. This could be one of our bridges to 2014.
  3. Monitor implementation of the Affordable Care Act (ACA) to ensure that the benefit package covers drug therapy for HIV positive individuals.
  4. Upon full implementation of ACA, ask the pharmaceutical industry to cut the price of their drugs based on economies of scale. For TAP to work, we will need to triple, if not quadruple, the number of people on drug therapy.
Isn't It Ironic? More Musings from Paul Kawata

We need to continue our pressure to get everyone covered under ADAP, especially if we are going to increase the number of people on drug therapy. It's a national shame that we have so many Americans on waiting lists. Maybe if policy makers were educated about the connection between treatment of HIV and the prevention of HIV, we might see more funding for this important program.

This is a big plan that requires big leadership. It should be led by People with AIDS, but also must include the government, the HIV community and the pharmaceutical industry. If HIV has taught me anything, I've learned that you have to be bold, you have to be strong, and you have to be willing to compromise. I see a roadmap to end this epidemic. You're damn right I am excited, you should be too.

Yours in the struggle,

Paul Kawata
Executive Director

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See Also
More News and Research on HIV Medications for HIV Prevention

Reader Comments:

Comment by: Fred (Lansing, Michigan, USA) Mon., Aug. 1, 2011 at 11:25 am UTC
This is a lovely thought -- except for the glaring omission related to the ETHICAL concerns of TAP. Very few are discussing the fact that taking ART has significant and long term health impacts. And NO ONE is discussing how to demystify the Doctor as God mythos Americans carry along with them. When a doctor says take a pill, most Americans say OK, and don't ask questions -- let alone understand the commitment they are making. TAP is a great idea, but only if administered in an ethical way. Sadly, that is not happening yet and many HIV positives are putting toxic chemo therapy in their bodies when they may not need to, all to appease the prevention gods. It is a shame to see this being touted this way, without even a hat tip to the serious ethical considerations involved.
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Comment by: Anonymous (Florida) Thu., Jul. 28, 2011 at 8:18 pm UTC
I like everything about this article except how it seems to regard all who are HIV-positive as "People With AIDS" (PWAs). I am only one of many who are poz but do not have AIDS. I began drug therapy well before reaching what is clinically defined to be AIDS and fully expect I'll never reach that point.

I don't say this to be critical, but rather to reinforce what I know to be the article's good message.
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Comment by: Mitch (Akron, OH) Sat., Jul. 23, 2011 at 5:37 pm UTC
Ironic? Yes. Unrealistic? Definitely. The future of treatment and prevention is as much about punishing those with HIV for our presumed sins as it is about any rational path to health and containment. We see this inclination manifest itself in the starvation of ADAP programs while we devote money to Prep, an ineffective sex toy for the wealthy and reckless. We see this in the disproportionate allocation of funding to a vaccine, when a cure is plainly more feasible. We see this in the explosion of discriminatory laws which prosecute those with the virus without acknowledging us as victims. Test and Treat as a means to an end? They'd rather see us die than save themselves. Ending this plague must first start with the management of age-old stigma against those who are deemed "sick"-a formidable social movement if ever there was one.
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