Category: Ending the Epidemic

Congrats to the jurisdictions that successfully submitted their CDC PS19-1906 application. Here are some of NMAC’s thoughts about the next steps for leaders working on the plan: Don’t wait. The turn-around time for your jurisdictional plan to end the HIV epidemic is short and waiting will make the job harder. Prior to receiving the final funding award, NMAC believes it is important to:

Elected Officials
Since plans are focused in particular jurisdictions, it will be important to inform, educate and seek support from city, county, state and federal elected officials. Their support is critical as plans are implemented. Not only do they help carry the message, federal elected officials vote on the 2021 Federal Budget that will hopefully include implementation funding for our important work to end an epidemic. The goal is to reduce new HIV cases by 75% in five years and we need elected officials on our side.House Appropriations Subcommittee Language
When putting together new planning bodies or using existing councils, health departments should remember the House’s subcommittee on appropriations language (see below):

Community-Based Organizations. —The Committee recognizes that community-based organizations play a crucial role because of their capacity to reach communities highly impacted by HIV. The Committee directs CDC to ensure that planning councils reflect their local epidemic by including community-based organizations and people living with HIV. The Committee further requests CDC’s progress of engaging such communities be included in the fiscal year 2021 Congressional Budget Justification.

Planning Bodies Should Reflect Their Local HIV Epidemic
While not final, the House requested that the planning bodies reflect their local HIV epidemic. They also requested a progress report about the role of community-based organizations in the CDC’s 2021 Congressional Budget Justification. This means Congress will monitor how CDC engages community. NMAC supports this action and will work with planning councils to make sure they meet Congress’s expectations. NMAC asks CDC to track demographic information on planning council members by HIV status, PrEP status, race, gender, gender identity, zip code, and sexual orientation. For most health departments these stats are a given; however, it’s not true for every jurisdiction. Zip codes are important because they often divide regions along lines of economics, race, sexual orientation, and health services.  HIV programs should be targeted to the zip codes with the largest number of PLWH. People who live in wealthier zip codes tend to have easier access to services that are missing in poorer communities. These are minimal standards and planning bodies should expand what demographics are to be shared based on their jurisdiction’s data sets and needs.

Policies and Procedures for Operation
When putting together your planning bodies, it will be important to determine policies and procedures for operation in advance of the selection process. To some this might seem insignificant, but there are people of color leaders who believe systems like Robert’s Rules of Order are a racist construct meant to minimize our voice. It is important that planning councils’ policies and procedures empower the communities the jurisdictional plans need to reach. NMAC believes race and our ability to reach people of color is core to the solution. If we include systems that are experienced as oppressive, then how can community believe in the solution.

Jurisdiction’s Epi Profile
Your jurisdiction’s epidemiological (epi) profile should be the foundation for program and funding decisions. As a result, everyone should be informed and educated about this critical information. Community needs access to HIV statics that include the race, gender, gender identity, sexual orientation, and zip codes for the people living with HIV and people on PrEP in their jurisdictions. Most jurisdictions have this data but NMAC is concerned the information is not available in all jurisdictions. This is the minimum data to be shared. Planning councils may ask for more information like community viral load, and STDs and Hepatitis overlays. NMAC believes that work to end the HIV epidemic should also include work to end STDs and Hepatitis.

Treatment Education for Planning Body Members
Planning council members must be knowledgeable about all the components of their jurisdiction’s plan, particularly information about U=U, PrEP and their epidemiological profiles. Often data is too technical and not understood by people without graduate degrees. Our movement has lost much of its community treatment education infrastructure. NMAC believes treatment education is core to supporting planning council members, PLWH, and people on PrEP to understand the value of retention in healthcare and adherence to meds. When people know better, they do better. NMAC calls on CDC and HRSA to support Planning Councils requests for treatment education services as tools for retention and adherence.

Organizing PLWH & People on PrEP
It will also be important to support organizing by People living with HIV and People on PrEP. Peer to peer education and support is also key to adherence and retention. I don’t think the federal government wants to have the sex talk with PLWH or people on PrEP. This is better left to support groups organized for peer to peer learning and to help communities meet the goals of this initiative. Ways to organize should be left to local planning councils to determine. Some will organize along lines of race, gender, gender identity, or zip code, while others want to be part of groups that include everyone. There is not one right way to organize and communities should make their own priorities. These organized coalitions should be prioritized for the treatment education efforts noted above.

There is lots to consider. This is the first of many e-newsletters that will suggest options for health departments to consider when putting together their jurisdictional plans.  We invite everyone to send additional recommendations to Linda H. Scruggs, the director of NMAC’s Training Center to End the Epidemic. Successful planning requires that all communities highly impacted by HIV have a real seat at the table. Far too often only lip service is provided to this important need. If you are unclear about how to proceed, ask for help. Nobody has all the answers, but it’s better when we work collaboratively. NMAC is committed to your success and we are here to serve.

Yours in the struggle,

Paul Kawata
30 Years of Service

Too many of us in the LGBTQ community can tell stories about a car full of strangers that screams “faggot, dyke or tranny”. This shared experience is all too common and a rite of passage for many in the queer community. Understanding the values and culture of the diverse LGBTQ communities is core to our efforts to reach the 400,000 people living with HIV who have fallen out of care or are unaware of their HIV status and the one million people we hope to get on PrEP.

As we start to build plans to end the domestic HIV epidemic, unfortunately gay men make-up 66% or the majority of the people living with HIV (CDC). This number is off because the CDC continues to count transgender people living with HIV with gay men. It’s time for the CDC to separate the transgender community epi profile from that of gay men, at least in the 57 federally targeted jurisdictions.  The HIV community has been making that request since the 90’s. U=U and PrEP efforts targeting gay men do not speak to the transgender community and visa versa.

Here is what we do know about transgender people living with HIV. According to a CDC meta-analysis, from 2009-2014, 2,351 transgender Americans were diagnosed with HIV. 84% were trans women and 14% were trans men. Half of these cases happened in the South. Among transgender women living with HIV, 51% are African American, 29% are Latinas, 11% are white and 9% are other. CDC did not list the percentages for American Indians/Alaska Natives, Asians or Pacific Islanders.

What the transgender and gay communities have in common is a shared experience of prejudice and discrimination. However, as a gay men I will never fully understand what it means to be transgender in America, but that does not mean I can’t support and stand in solidarity with these allies. When NMAC fights for communities that are highly impacted by HIV, that means we are fighting for gay men, the transgender community, black women, Latinas and drug users.

Just last year a car full of strangers shouted “faggot” at me. I abruptly turned around and said, “that’s Mr. Faggot to you!” As their car started to slow down, I immediately regretted my mouth. I am 5ft. 6 in. on a good day, so that was probably not the safest thing for me to say. These are crazy times and I’ve had to learn to not take my safety for granted. As I started to cross the street, the car made a turn into my cross walk. Not knowing what to do, I blocked the car from passing. Then I got my smartphone and took a picture of the license plate. The car quickly speed off and my heart was beating like a drum.

Solutions to ending the HIV epidemic are not as simple as linking folks to healthcare and giving them a prescription for meds. If it was that simple, we could have done it a long time ago. Solutions to ending the HIV epidemic require us to reach communities that have eluded previous efforts. To speak to people who daily face discrimination and even hatred for being themselves. That’s why I tell my federal white cisgender male friends that we have different roles in ending HIV.  Just as I will never understand what it means to be transgender in America, you will never understand what it means to be gay, particularly a gay man of color, particularly a feminine gay man of color with a big mouth. On the 50th Anniversary of Stonewall, I invite you to march with me so we can stand in solidarity. I also ask you to understand that it is nothing personal, but sometimes we need to listen and leave the leadership to the communities we need to reach. Happy Pride!

Our movement is about to come full circle as we build plans to end the HIV epidemic and hopefully the syndemics of STDs and hepatitis. We stand on the shoulders of heroes who fought an unknown virus. The lessons learned during the plague years formed the foundation and strength of our work. To memorialize their courage and sacrifice, the theme for the 2019 United States Conference on AIDS is Ending the Epidemics in Their Memory.

It is impossible to fully describe the early years. Those unspeakable times became part of the DNA in our movement. We learned to fight back because nobody would take care of our friends. Food was regularly left outside of hospital rooms, funeral homes refused to cremate our partners, and the list goes on. These harsh lessons taught us that the fight against the virus was also a fight for civil rights, equality and justice.

As we build plans to end the epidemic, USCA honors and remembers the leaders who made this moment possible. Leaders like Craig Harris, one of NMAC’s founders and our first board chair.  In 1986 Craig jumped onto the stage of the American Public Health Associations’ first plenary on AIDS because all of the speakers were white. He grabbed the microphone and said, “I will be heard.” NMAC, like many HIV organizations, started as a protest to the unfair and unequal treatment of communities highly impacted by HIV. We lost Craig early in the epidemic, but his vision for racial justice is still core to NMAC and hopefully all of our work to end the epidemic.

Who was your Craig Harris? Who was the person that exemplified strength and courage in the face of great adversity? USCA wants to honor their names. As we build plans to end the epidemic, it is important to remember that our work is rooted in struggle, discrimination, prejudice, and hate. This is an epidemic that mostly impacts people on the margins of the mainstream. Our work was never about soccer moms, but we are thankful for their support.

This year’s USCA will have two walls with the names of leaders we lost in the struggle; leaders who were the “sparks” that ignited your agency or community. Our online only program book will tell their stories. Unfortunately, there are too many heroes and too many stories that are forgotten. USCA is collecting names, photos and stories of heroes in the struggle. Please email this information to communications@nmac.org by June 21 to be included on the wall and in the online program book.

Our movement is extremely diverse, but sometimes our history gets written from limited perspectives. Please help NMAC document the diversity of stories and leaders in our movement. We hope to hear from middle and rural America, people of color, the transgender community, the South, women, youth, elders, drug users, and LGBTQ communities because they are all key to our efforts to end the HIV epidemic. We are writing history. Let’s remember the courage and strength of the heroes who are gone too soon. Their lives form the foundation for our work and commitment to justice, equality, and civil rights.

Also, don’t forget that the Early Bird Registration rates for USCA end THIS Friday! Register now and don’t miss out on the lower rate!

Yours in the struggle,
Paul Kawata
30 Years of Service

Undetectable equals Untransmittable/U=U vs. Treatment as Prevention (TasP). One has captured the imagination of people living with HIV (PLWH) around the world while the other seems to have disappeared. U=U was created by community to empower PLWH to have an undetectable viral load so they can’t transmit HIV. TasP was created by scientists to explain how HIV treatment is also HIV prevention.

This difference matters because we are about to build multiple pathways to end the epidemic. Do we listen to community or should the pathways come from scientists? Too often community is dismissed. Getting the federal government and scientists to go along with U=U was a fight. Thank you Bruce Richman for leading the charge.

However, U=U needs private health insurance, the Affordable Care Act, Medicaid, expanded Medicaid, or Ryan White services to be effective. Without continuous and sustained access to healthcare and meds, none of our efforts to end the epidemic will work.  That is why HRSA’s HIV/AIDS Bureau (HAB) will play such a critical role.

Ending the epidemic means retaining PLWH and people on PrEP in healthcare and adherent to meds for the rest of their lives. We know the desired end result; however, agencies don’t know what programs to implement because these communities have eluded previous efforts. So far, PrEP is not reaching communities of color. Four hundred thousand PLWH have fallen out of care or are unaware of their HIV status.

Programs to end the epidemic must not only be scientifically accurate; they also need to retain 1.1 million Americans on PrEP and keep 1.2 million PLWH in healthcare and on meds for decades. Failure to reach scale is the main reason previous efforts failed: we could not reach enough people to get the scale needed to bend the curve of new HIV cases. While 2.3 million people can seem daunting, it’s not like previous effects that needed to work every time anyone has sex. I’m just saying.

To be clear, I’m not saying that community is always right. I just don’t want us to be dismissed out of hand. This year’s United States Conference on AIDS will celebrate U=U and community. Working with the Prevention Access Campaign, USCA is committed to a plenary on Saturday, September 7 that will inspire and educate about the central role community must play.

Now is not the time to reinvent the wheel. Let’s use community to shape best practices for reaching populations hard hit by HIV. Those communities must include gay men, particularly gay men of color, specifically black and Latinx young gay men, the transgender community, black women, Latinas and drug users. These communities are stigmatized, discriminated against, and bullied. Too many are forced to live in the margins of our society because they are different. Their access to healthcare, housing, and employment can be tenuous. While being very careful to not further stigmatize, we need to understand and directly address the realities of their lives. Given all these variables and the complexities of being different in America, how do we also get these folks to stay in healthcare and on meds for the rest of their lives because that is what it will take to end the HIV epidemic in America. Obrigado.

The Committee invests in a new HIV initiative to reduce transmission of HIV by 90 percent in the next 10 years. The bill includes an increase of nearly $500,000,000 for HIV research, prevention, and treatment—almost twice the size of the increase requested by the Administration.

The bill includes an increase of $170,000,000 for HRSA programs—including Ryan White and Community Health Centers—to increase the use of pre-exposure prophylaxis (PrEP) among people at high risk for HIV transmission and to increase the use of antiretroviral therapy (ART) for individuals living with HIV.

The bill also includes $140,000,000 for CDC activities to diagnose people with HIV as early as possible after infection, link people to effective treatment and prevention strategies, and respond rapidly to clusters and outbreaks of new HIV infections. There is also an increase of $16,919,000 for School Health-HIV and an increase of $17,000,000 for the Minority AIDS Initiative, a cross-cutting initiative to improve prevention, care, and treatment for minority populations disproportionately affected by HIV.

Furthermore, the Committee rejects the Administration’s proposal to cut NIH’s HIV research budget by more than $400,000,000. Instead, the Committee continues to invest in research that led to breakthroughs in current treatments such as PrEP and ART. The bill includes an increase of $149,000,000 for NIH to continue funding research that could lead to an HIV vaccine or a cure.

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The directive about CBOs considered policy language from NMAC and the Partnership to End the Epidemics. Planning councils must reflect the demographics of their local HIV epidemic. The House added the enforcement language. While we still have to wait for the Senate, NMAC hopes the planning directives to the 58 jurisdictions going out in June will reflect the House’s language. The Partnership also pushed for language about CBOs getting funded because in some jurisdictions not enough money flows to community. NMAC agrees with the House that CBOs are best able to reach the communities that are highly impacted by HIV.

NMAC was very pleased by the directive to ensure that NIH increases HIV/AIDS research funding by the same percentage as the increase to NIH’s overall budget. This has been a longstanding agreement. We encourage the Senate to include a similar directive.

Science has proven that abstinence only sexual health education does not work. We commend the House for following the science and defunding sexual risk avoidance. These programs run contrary to our HIV prevention work and our goal to get 1.1 million Americans on PrEP. Comprehensive sexual health education, including education about PrEP, is the only way to end the HIV epidemic.

While we face an uphill battle in the Senate, the House provided a template for the HHS budget that starts our work to end the HIV epidemic in America. Using 2019 funds from the Minority AIDS Initiative, HHS will put out a notice of the availability of funding in June to the 58 jurisdictions to support the start of their planning process. Things are moving and shifting quickly, we look forward to seeing you at this year’s United States Conference on AIDS.  This year’s meeting will focus on the federal plan to end the HIV epidemic. NMAC is pleased to announce that the National Institutes of Allergies and Infectious Diseases will bring representatives from all of the Centers for AIDS Research (CFARs) to USCA. It is very important that we work collaboratively to end the epidemic.

*This is a photo from back in the day of the Community Planning Leadership Summit. It documents the important collaboration between health departments, community and CDC.  (l-r) Dr. David Holtgrave (CDC), Frank Beadle (AED), Julie Scofield (NASTAD), & me.