Now That We Know…

Ending the Epidemic Blog

For several months now, a key benchmark in creating an AIDS-free generation, implementation of the Patient Protection and Affordable Care Act (ACA) has been stalled in political gridlock. The recently released Health Care Engagement Cascadeby race/ethnicity and age at AIDS 2012 highlighted the significant barriers to accessing quality and affordable health care and reducing HIV incidence facing African Americans and Latinos, the two communities most disproportionately burdened by HIV. With President Obama’s re-election eliminating any possibility for a repeal of the ACA, we must reinvigorate our efforts to ensure the significant changes that will occur to our service delivery systems, including how the private and public sectors will work together to address the health disparities illustrated in the cascade.

Community based organizations (CBOs) are making difficult decisions to retool their mission and programs to remain strategically positioned for future funding and service delivery opportunities. And while we’ve continued our planning for the coming sea change, I heard from many in the community that it has felt like we have had to figure out how to move forward alone. Community has always come together to overcome adversity and in this instance too, we will prevail.

 Where we go from here:

  1. Understand/advocate for Essential Health Benefits (EHBs) packages that provide comprehensive services to people living with HIV/AIDS (PLWHA). As these become more apparent, we will need to work with our state and/or federal government partners to ensure that gaps or barriers to accessing essential health and supportive services are addressed by Ryan White and other available resources.
  2. Develop a strategic plan to enroll and transition PLWHA into insurance plans available in the new exchanges being set up under the ACA, which for some may be run by their state and for others, may be run by the federal government. The ACA provides resources for Patient Navigators who will be charged with helping consumers navigate the system and gain access to the care they are eligible for. Patient Navigators will be essential. PLWHAs will need advocates to provide individual support for specific issues related to insurance exchanges and plan selection, other HIV/AIDS wrap around services and medications. Do you have patient navigators? Do you have enough of them?
  3. How will you communicate the new reality to your consumers? There are many ways to educate them about this new reality, but at a minimum we must prepare our clients for the coming changes by offering community forums and publishing frequently asked questions to avoid interruptions in care. Does your staff have talking points so you are speaking to your clients with one voice?
  4. Collaboration is key to any smooth transition. Are you engaging PLWHA to inform and support your advocacy. Are you reaching out to your state insurance exchanges, your community health centers, and other HIV/AIDS organizations and health departments? The NHAS charges all of us with increased coordination and collaboration.
  5. Once your clients are enrolled in an insurance plan and/or Medicaid, are you planning to employ PLWHA as peer navigators to work their fellow PLWHA to remain engaged in care and make decisions about their treatment? Treatment education will be an essential part of the support that navigators will provide.

I know this can be overwhelming. NMAC wants to help you develop a pathway for success. Please consider the following:

  1. Sign the Declaration To END AIDS in America (
  2. Plan to attend the 2013 Summit To END AIDS in America and/or the U.S. Conference on AIDS from September 7-11 in New Orleans (http//
  3. Work with NMAC to host a Regional Summit to END AIDS in your city/county/state. Contact Kali Lindsey ( if you are interested. These regional summits will work with local communities to develop a strategic plan to end the epidemic in their city/county/state.
  4. Work with NMAC to host a Regional PLWHA Town Hall in your city/county/state. Contact Moises Agosto ( if you are interested. These town hall meetings are to provide a forum for PLWHA to discuss the promise of treatment as prevention, ACA and how it will impact their health services.
  5. Sign up to be part of NMAC’s new online Learning Lab and Resource Library ( This will be one of the ways that NMAC will provide training and capacity building.
  6. Consider participating in HIV Health Reform Group ( Sign up to get their email updates on conference calls and webinars.
  7. Religiously attend Federal AIDS Policy Partnership’s (http://www.federalaidspolicy.orgHIV Health Care Access Working Group (contact Andrea Weddle at aweddle@IDSOCIETY.ORG, Robert Greenwaldrgreenwa@LAW.HARVARD.EDU or Amy Killelea) and/or Ryan White Work Group (contact William McColl or Ann Lefert at calls and seminars to remain current to information and changes as they come online. Also, given changes coming down the pike with implementation of High Impact Prevention, you should be sure to attend HIV Prevention Action Coalition meetings as well (contact Kali Lindsey at to be added to that list.

2013 is going to be a very busy year. Please know that NMAC is in your corner. We look forward to working with you to END AIDS in America.

Yours in the struggle,

Paul Kawata
Executive Director
National Minority AIDS Council