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Speech from Paul Kawata

Speech from Paul Kawata @ Opening Plenary
National HIV Prevention Conference
August 14, 2011
Atlanta, GA

I want to thank the Centers for Disease Control and Prevention for giving me this opportunity. I’ve been writing a series of “musings” where I ask the question “Are You Ready?” Our movement is going through a transformation and I am concerned that some of us will be left behind.

The last time we faced this significant a change was in 1996 with the introduction of Proteases Inhibitors. The impact of combination therapy changed the landscape of our movement. Community based organizations had to retool their services from those that take care of the dying into services that support the living. Over the next 3 years we will have to transform again, with the intersection of

1. Affordable Care Act
2. National HIV/AIDS Strategy
3. Treatment as Prevention (TasP)

Unfortunately, we are in an economic climate where Congress and the President just cut $2 trillion in federal spending. It’s the economics that are going to make this discussion particularly difficult. Is it reasonable to start new HIV prevention programs when state budgets are being cut? A lack of funding will definitely impact our ability to implementation the national AIDS strategy.

The irony is, we are at a moment in our movement’s history where we could end the epidemic. Think about it for a moment, we could end this epidemic.

At the IAS conference last month, Dr. Julio Montaner discussed the data for HIV Prevention Trial Network Study 052. The study showed that HIV-positive individuals who started treatment and got their viral load to undetectable, reduced the risk of HIV transmission by 96 percent. I have to tell you, I cried. Who cries at a scientific presentation? Someone who has been fighting this epidemic since the beginning, someone who believes we may be at the beginning of the end.

There is something so perfect that on the 30th Anniversary of this epidemic, we get the data that gives us a road map to the finish. However, this was research performed in a controlled scientific environment, now we have the responsibility to apply it to real life. This is where this discussion gets difficult.

Over the next 6 months, you will be asked to take a hard look at the impact of your prevention efforts. Some programs will need to be retooled, but not everything. The CDC is calling this High Impact Prevention (HIP). I know, another acronym, what’s important to understand is that Treatment As Prevention is a part of the CDC’s HIP Initiative. They work collaboratively to end HIV in America.

The new CDC FOA was the start of that discussion. How will you incorporate 052 into your planning? More importantly, how will you accomplish the promise of HIV prevention without new money? Planning to implement 052 has to happen at the city, county and/or state level. What works in one region may not work in another. Your plan will need to:

1. Identify HIV positive individuals who are not on treatment and to start treatment if it is medically appropriate
2. Work with HIV positive people who are on treatment, but not able to get their viral load to undetectable
3. Identify those who don’t know they are HIV positive

It is goal #1: Identify HIV positive individuals who are not on treatment and to start treatment if it is medically appropriate that raises the most challenges. Is it medically appropriate to start asymptomatic HIV positive individuals on treatment?

When combination therapy first started, the side effects of those original medications created significant problems. As a result, some PWAs ended or delayed the start of therapy. Newer medications have fewer side effects and are much easier to take; however, they still have side effects for some individuals. This begs the question, Is it ethical to use the prevention benefits of treatment as a reason to start antiretroviral therapy?

Does that start us down the slippery slope were society/we use public health as the justification to trample on the rights of People Living with AIDS. Unfortunately, there are many examples from our history where this was true.

We know that criminalization of HIV transmission is not good public health, so should we understand that we cannot force people onto treatment.
That is why I continue to press for the leadership of People With AIDS. We have to balance the 052 prevention benefits vs. an individual’s right to choose. Only with the co-operation, really I mean leadership of People Living with AIDS, will Treatment As Prevention work.

As you plan and implement your TasP strategy, certain guiding principles should be observed. They are essential for protecting the rights of PWAs and for ensuring the integrity of TasP.

Guiding Principles for Implementing TasP:
#1. Transparent Planning Process
TasP is about lowering a community’s viral load to reduce the transmission of HIV. It requires the active participation of People with AIDS, Healthcare Providers, Community Based Organizations, Health Departments, Federal Government, and the Pharmaceutical Industry. For this process to work, planning and implementation must be:

1. Transparent
2. Have Broad Community Input, particularly with PWAs
3. Promote Measurable Results
   

TasP needs the cooperation of hundreds of thousands of PWAs. That is why transparency and community input are so essential.

#2. Can’t Force People Onto Treatment
Given the need for daily adherence to medications, forcing individuals onto treatment will not work.

We are asking our friends to make a lifelong commitment to stay adherent to their medications. Honest, upfront conversations about this commitment need to happen before starting therapy. For a variety of reasons, treatment may not work for someone at this moment in their life. This has to be OK.

#3. Commitment To Treatment Education & Treatment Adherence
If we ask PWAs to make a lifelong commitment to be on HIV medications, then we have a responsibility to educate about those medications. It’s not reasonable to ask people to go on medications without giving them the tools to understand those drugs, what may happen to their bodies, and how it may impact their lives. Without treatment education, TasP is destined to fail.

Lack of adherence is probably the biggest barrier to achieving an undetectable viral load. Removing structural and behavioral barriers to treatment adherence are key to ensuring success.

One structural change is to provide 90 days of meds instead of the traditional 30 days. Not only is a 90-day supply cheaper, it is also more convenient. We also need to push for innovations in dosing. A monthly pill would revolutionize HIV treatment and adherence. I hear that Dr. David Ho is trying to make this a reality.

#4. Mechanism For Payment
If we put people on HIV medications, we must ensure that the resources are in place that gives access to these drugs for the rest of their life. Starting and stopping medication is a sure way to develop resistance.

Our current system is not set up to handle an influx of PWAs into treatment. Just look at the size of our ADAP waiting lists. TasP may not be viable until the Affordable Care Act is fully implemented. Waiting until 2014 could mean 125,000 more Americans will be infected with HIV.

#5. Integrate Behavioral Health and Harm Reduction
This recommendation is from my friends at the Harm Reduction Coalition. Mental health and addiction issues pose substantial challenges to HIV treatment. All too often, behavioral health needs are under-recognized or undertreated; especially outside of Ryan White-funded clinics. Multidisciplinary care that integrates behavioral health remains all too rare, and as a result, many PWAs with these co-morbidities fall through the cracks.

#6. Regular Viral Load Testing
Viral load testing is an essential component to fully implement TasP. The cost of this testing needs to be built into the provision of care. It is not enough to just do CD4 counts. We need cheaper and more rapid viral load tests. At a minimum, the cost for viral load testing should be reduced due to a significant increase in the volume of testing.

#7. Stable Housing
Activists like to say “Housing Is Prevention”. If an individual does not have stable housing, all other issues tend to fall by the way side. One of the best ways to ensure compliance with HIV treatment is to support stable housing for PWAs. The Ryan White Care Act and Housing Opportunities for People with AIDS are an important part of stopping this epidemic.

All these reasons provide my rationale for why PWAs must lead the way. There will be critical roles for CBOs, heath departments, healthcare providers, the federal government and the pharmaceutical industry, but it’s going to take People with AIDS to end this epidemic. Personally, I think that’s wonderful. It could be the perfect ending to this unprecedented tragedy.

So that’s the Paul Kawata roadmap for ending this epidemic. My team at NMAC and I hope to provide additional tools to help you refine your work. Thank you for all that you do to fight HIV.

We can end the AIDS epidemic. It’s in our grasp, but it’s going to require all of our leadership, vision and resources to make this a reality.

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