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Ending the Epidemic: A Call for Leadership

By Paul A. Kawata

April 26, 2012

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Community-Based Organizations

  1. Adapt
  2. Treatment Education Programs
  3. PLWHA on Boards of Directors
  4. Work Collaboratively

It's time to adapt. CBOs may provide fantastic services, but they need to provide services that are both fantastic AND will be funded as we work to end the HIV/AIDS epidemic. HIV prevention is changing. HIV care is changing. High Impact Prevention (HIP) from the CDC means increased focus on diagnosing people who are HIV-positive and don't know. The ACA will change the way HIV/AIDS services are provided and funded.

It's a brand new paradigm. CBO's must change their service models to adapt to the ACA and must shift to provide secondary prevention services to PLWHA. Even the best organizations will face challenges. With this amount of change, collaboration will be a key determinant of who survives and/or who fails.

Healthcare Providers

  1. Standard of Care
  2. Sequencing of Medication
  3. CD4
  4. Patient to Doctor Ratio
  5. Nurses

Do the new treatment guidelines change the standard of care for PLWHA? If you have HIV and your doctor does not recommend that you start antiretroviral therapy (ART), does that mean you are receiving substandard care?


Given the revised HHS treatment guidelines on when to start ART, do we also need to review the sequencing of medications? Both HIV specialists and primary care doctors treating PLWHA will need to keep themselves up to date on all classes of HIV medications and when it is best to prescribe a specific regimen. The healthcare industry will need to regularly evaluate comparative effectiveness of treatment.

The requirement to monitor CD4 counts is fading with the guidelines recommending PLWHA begin ART regardless of their CD4 counts. Changes in or the ability to maintain a suppressed viral load (VL) will become the primary measurement for health equity among PLWHA. Costs of VL tests are increasing significantly as will the number of clients who will benefit from those tests. Any plan serving PLWHA needs to cover the costs of these tests.

Changes in the treatment guidelines mean hundreds of thousands of PLWHA will need access to medication and related health monitoring services. The ACA will increase the number of PLWHA who will go to community health centers (CHC). Given the doctor patient ratio at many CHCs of 1,500 to 2,000 patients for every doctor, will PLWHA get the attention and care necessary to adhere to ART?

In many states nurses are allowed to prescribe medications. How can we better use nursing professionals to improve the standard of care? These are all difficult questions that need answers quickly. The guidelines have already changed and the ACA starts in 2014.

People Living With HIV/AIDS

  1. PLWHA Coalitions
  2. Fight Criminalization
  3. Sit on Board of Local CBOs
  4. Amend Denver Principles

The central premise of TasP requires PLWHA to accept antiretroviral treatment and achieve and maintain an undetectable viral load. This puts PLWHA in the driver's seat. Now more than ever, we need to invest in and support their leadership! Can you image what would happen if PLWHA organized like they had in the past? In the early days of the epidemic, People with AIDS (PWA) needed to organize to get the necessary services and treatment to stay alive. Now PLWHA need to organize to lead TasP and end this epidemic.

It's time for a PLWHA Coalition renaissance. This time, these coalitions need to focus on the rights of people living with the virus to not be exploited in order to achieve the goals of TasP. Stigma and discrimination are still difficult realities facing PLWHA.

As my friend Sean Strub has said "Criminalization of HIV transmission is the driving force around stigma -- you can't talk about stigma without addressing the most extreme manifestation of it in the criminal code." If society is going to ask PLWHA to go onto treatment and to be undetectable, then they have the right to ask for certain protections.

In addition to these protections, PLWHA should also be an integral part of the leadership in the agencies and HDs that are tasked with implementing TasP. CBOs, HDs and federal agencies need PLWHA to end this epidemic, so make them central members of your boards and staff.

Ultimately, it may be time to amend the Denver Principles. These principles worked for People with AIDS in the beginning of the epidemic, but maybe People Living with HIV/AIDS need a revised vision that includes the realities of TasP and their central role to its success.

We need leadership at all levels if we are to successfully realize the goal of ending the HIV/AIDS epidemic. What are you doing to end the epidemic in America?

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