Category: Ending the Epidemic

This week’s hangout is a collaboration from the Partnership to End HIV, STDs, and Hepatitis working together to provide an update to the PPP and CARES Act. Since it looks like Congress will approve another round of funding, we thought it might be helpful for constituents to speak with our joint lobbying firm Brownstein Hyatt Farber Schreck about this initiative.

Register Today
April 23 at 10 AM (Eastern) – Registration
April 23 at 2 PM (Eastern) – Registration

The first round of funding did not go as planned for too many. Will this next round be any better? The Partnership’s lobbyist David H. Reid and his colleague Matthew McKissick will be online to talk about the new round of support and how nonprofits can apply.

We invite everyone to participate and share strategies for success. In full transparency, the Partnership had very mixed results with the first round of PPP funding. NMAC’s bank, Capital One, never got it together to accept applications. The AIDS Institute was approved, and they are waiting for the check. AIDS United applied but has not received final word. NASTAD did not apply.

The Hangouts are a place to check-in and commiserate. They run around 45 minutes, with 20 minutes for the presentation and 25 minutes for questions. We’ve shortened the hangouts because we are all on too many zoom calls. Please be safe during these difficult times.

Yours in the struggle,

        
Jesse Milan                             Stephen Lee
AIDS United                            NASTAD

               
David Harvey                       Paul Kawata                        Michael Ruppal
NCSD                                  NMAC                                  The AIDS Institute

• 10 AM (EST)for the east coast (register here)
• 2 PM (EST) for the west coast (register here)

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Our efforts to end the HIV epidemic must prioritize people living with HIV/AIDS (PLHIV/AIDS), particularly people who have fallen out of care and off their meds. Four hundred thousand Americans living with HIV have fallen out of care. Meds keep PLHIV/AIDS alive. We prioritize people who have fallen out of care because of the benefits to the individual and their community. Plans to end the HIV epidemic (EHE) must focus on retention in care. As we have learned, it is not a question of linkage, it is retention that is the challenge.

EHE plans need medical case management or patient navigators to both support people in care and to work with those who have fallen out of care. Hires in the past had challenges because these positions were usually classified as entry level positions. The people hired had little understanding about what it means to live with HIV. To end the epidemic, we need to honor the experience and hire people who live with HIV and AIDS day to day. Their lived experience should mandate a professional salary because this is a specialized skill and not an entry level position. Hire people who have a personal understanding of what it means to successfully live with HIV. This not only benefits the outreach programs it also helps the employee. Studies have shown that too many long-term survivors live with isolation that can lead to depression. Having a job is an important component to self-worth and value. Asking someone’s HIV status when hiring is illegal; however, allowing people to self-disclose is perfectly acceptable.

Not only do we need to hire people living with HIV/AIDS, we also need to make sure the new hires reflect the diversity of the local epidemic in terms of race, gender, sexual orientation and people with trans experience. Peer to peer outreach has always been shown to be the most effective way to  touch hard to reach communities. From NMAC’s perspective, who gets hired will make the difference between ending the epidemic versus staying the course with 40,000 new cases every year.

Building the infrastructure needed to end the HIV epidemic requires thousands of new hires to retain the 400,000 people living with HIV who have fallen out of care and the 900,000 more people needed on PrEP. This is the reason NMAC and many national partners have advocated for the hundreds of millions in new funding. The funding will only matter if jurisdictions, health departments, community based organizations, and health centers hire people who are successfully living with HIV and help them to translate that experience to their peers.

EHE plans should be the largest new employment program for PLHIV/AIDS. This is not about being politically correct; it is about creating programs that work. Trust is a key component to keeping people in care. You are more likely to trust people who have similar values and life experiences. Living with HIV is a very unique experience. It’s much easier to work with clients when you speak from personal experience when addressing the challenges of talking to your doctor, disclosing to your family and friends, taking meds on a daily basis, dating, sex, children, employment, and all the issues that impact daily life with HIV.

This doesn’t mean that people living with HIV should be limited to HIV care jobs. Any job with a living wage, career growth opportunity, and professional development opportunities should be open to and held by PLHIV/AIDS. But this particular area seems like a natural and logical fit for many PLHIV/AIDS.

Over the next weeks, NMAC is going to put together a sign-on letter to HHS, CDC, and HRSA asking them to review, evaluate, and update the HIV service mix to meet the needs of an aging population of PLHIV/AIDS. NMAC will bring 15 people over 50 living with HIV to AIDS Watch to both train and to make sure this important voice is at the table. While in Washington, NMAC will seek a meeting with Harold Phillips, Dr. Laura Cheever, and Dr. Jono Mermin to talk about all the issues, challenges, and opportunities that ending the epidemic provides for people living with HIV/AIDS. The administration may not fully understand the central role at PLHIV/AIDS play in ending the epidemic, so it is our movement’s responsibility to both educate and nudge them.

Yours in the struggle,
Paul Kawata
One of 33 founders of the National Association of People with AIDS

The politics of HIV and AIDS can be difficult. Sometimes you have the best of intentions and it still goes wrong. Last week we made a mistake and I apologize. My Facebook post on the United States Conference on AIDS name change set off a firestorm of comments that I hope this e-newsletter will clarify.

NMAC is committed to People with AIDS and the Denver Principles. I was in the room when the Principles were finalized. In 1983, for reasons that are still unclear to me, I was recruited by Richard Dunne from Gay Men’s Health Crisis to come to Washington, DC to be the first executive director of the National AIDS Network. My founding board included Tim Wolfred from the San Francisco AIDS Foundation, Paula Van Ness from AIDS Project Los Angeles, Larry Kessler from AIDS Action Committee of Boston, Jim Graham from Whitman-Walker Clinic, and Michael Hirsch from the PWA Coalition of New York. It was Michael who vouched for me. Because of him, I was at the second meeting for what would become the Denver Principles. I was just a kid, yet there I was in the room with all of the heroes of our movement. It is Bobby Campbell, Bobby Reynolds, David Summers, Michael Hirsch, and Michael Callen who taught me about activism and speaking truth to power. I vividly remember Michael Callen and Michael Hirsch fighting about strategy like men who knew they were dying and the Denver Principles were their legacy. I am also one of 33 founders of the National Association of People with AIDS (NAPWA) and I am the last one alive. Whether it was a conscious decision or not, there needed to be one negative person in the room who could remember. That job fell to me. I seldom speak about my HIV status because I believe it is implies a privilege that really shouldn’t matter. However, it is my honor and responsibility to remember the stories and to call out the names of those early leaders so our movement will never forgot their courage and sacrifice.

Fighting for people with AIDS is in my DNA and a core value at NMAC. I would never intentionally do anything to erase People Living with HIV or AIDS. When NMAC announced the name change of USCA, we thought we were standing in solidarity with PLHIV. In the past, many leaders have told us that “the word AIDS is stigmatizing.” Per the Denver Principles, NMAC wanted to honor the leadership of PLHIV organizations. How can we reach community if we were using a word that they considered discriminatory? Unfortunately, to some PWAs, our action looked like the opposite of its intention.

Last Friday there was a call of NMAC’s board, staff, and constituent advisory panels to talk about the name. People of color understand the importance of self-determination and the pain of erasure. Our first step was to consult and work with the organizations that were founded and led by people living with HIV and people with AIDS. We reached out to the Positive Women’s Network, Positively Trans, US People Living with HIV Caucus, and the National Working Positive Coalition to ask them for help. We invited them to the 2020 conference to facilitate a community discussion about the Denver Principles, the use of People Living with HIV and People with AIDS, and the need for our movement to support the principles of empowerment and self-determination.

The name of the conference will be changed to the United States Conference on HIV/AIDS (https://uscha.life/). The revised name was suggested by many PWAs online. Nobody wins when our movement is divided, particularly when it’s about the name of a conference. NMAC may have had the best of intentions, but it was definitely not the right time or way to make the change. We had to move quickly to make these changes, including the welcome video and the Spanish Language version of the site. Please let me know if we missed any of the needed changes.

I would be remiss if I did not mention concerns about the tone and tenor of some of the comments on Facebook. While it was mostly an amazing conversation between activists, a few of the posts crossed the line. As an organization that leads with race, our job is to help our movement understand the impact that race has on our work. A few comments were quick to minimize the contributions of women of color, particularly women of color living with HIV. Assumptions were made about their HIV status that were wrong. Assumptions were made about NMAC’s commitment to the Denver Principles and People With AIDS that were also wrong. While they may not have intended for their comments to be viewed through the lens of race, to people of color certain shares were hurtful and all too familiar.

I don’t know why I got to be in the room at the start of the National Association of People with AIDS or when the Denver Principles were finalized. The meetings were a master class in leadership that formed the foundation for my activism. The San Francisco/New York differences in strategy were the stuff of legends. These were men – yes, it was only men back then and mostly white men – who were fighting for their lives. They talked about empowerment because the world had taken away their power. For some of them, it was their first experience as a second-class citizen, and it made them mad. Everything they believed in had vanished and in its place was a death that was worse than anyone could have imagined. Empowerment and self-determination are shared values for PLHIV/AIDS and people of color. While NMAC’s goal was not to erase People with AIDS, I do understand how our actions could be misinterpreted. We made a mistake and changing the name to the United States Conference on HIV/AIDS is our way to apologize and hopefully move forward. Activism works!

Yours in the struggle,
Paul Kawata

Today the administration released their recommendations for the 2021 federal budget that included $716 million for the Ending the HIV Epidemic (EHE) efforts. The Budget includes: $371 million for CDC to reduce new HIV infections; $302 million for Health Resources and Services Administration (HRSA) to deliver HIV care through the Ryan White HIV/AIDS Program and to supply testing, evaluation, prescription of PrEP, and associated medical costs through the Health Centers program; $27 million to the Indian Health Service (IHS) to tackle the epidemic in American Indian and Alaska Native communities; and $16 million for the National Institutes of Health (NIH) for evaluation activities to identify effective interventions to treat and prevent HIV.

Congress does not typically pass a budget in an election year and more than likely we have a Continuing Resolution (CR). NMAC and the many partners with a Washington presence will fight like hell for the new funding, but there are forces beyond HIV that will shape the end result. All is not lost, because often a budget gets passed after the election.

NMAC is a small agency working to have a huge impact. While we are thankful to the administration for the much-needed funding, it is difficult, if not impossible to reconcile our concerns about other parts of the budget and the policies of the administration. Our movement looks to NMAC to lead with race as we fight for health equity and racial justice for the communities hardest hit by HIV. We try to walk this very thin tightrope, but it’s not easy and there are many landmines.

Over the next few months, the federal government’s EHE efforts will grant hundreds of millions of dollars to the 57 target jurisdictions and beyond. This initiative is the direct result of NMAC and many other partners working together to move our work beyond the maintenance phase that had become the new normal. Now our job is to make sure the new funding gets to community because that is where we will end the epidemic.

Our EHE work must be based on our values. NMAC leads with race to end the HIV epidemic. Our values shape the way we fight. They are the foundation for the principles that guide our work and the best practices to end the epidemic. Here are some values that we hope jurisdictions will incorporate into their plans,

• Race matters.
• People Living with HIV/AIDS must be prioritized, especially PLWH/A who have fallen out of care and off their meds.
• Jurisdictional plans must reach communities highly impacted by HIV who were missed in previous efforts.
• Reaching hard to reach communities requires the buy-in and leadership from the people we are trying to reach.
• New hires to implement EHE plans should come from these communities.
• Funding should always follow the data; however, we need better data on the transgender community.
• CDC needs to stop classifying the transgender community with men who have sex with men.
• Community led planning and community evaluation needs to be built into the process.
• Scientifically proven interventions are key to this effort. These interventions must work at a scale to reach the large numbers targeted in the plan.
• Fighting stigma and ending HIV criminalization is core to supporting people living with HIV/AIDS.
• STDs and Hepatitis are key pathways to ending the HIV epidemic.

NMAC is concerned that some jurisdictions will repeat the same programs and miss key communities. While we need to expand programs that are successful, we must also acknowledge that large segments of the communities highly impacted by HIV are not being reached. This is particularly true for gay men of color, black women, the transgender community, and people who use drugs. NMAC respects Dr. Redfield’s call for Disruptive Innovation to end the epidemic. Like him, we believe there needs to be disruptive innovation in order to reach communities that don’t trust the status quo.

Talking To CDC
Two weeks ago, I wrote about the number of staff that are in CDC’s Division of HIV/AIDS Prevention. After talking with CDC, it is important for me to correct the record. The Division of HIV/AIDS Prevention (DHAP) at CDC does not have 800 full time employees:

• DHAP has the authority to hire 554 full time permanent employees at headquarters and 20 in the field for direct assistance.
• However, currently, the Division has approximately 425 full time permanent employees at headquarters and 13 in the field.

CDC let me know that they need a fully resourced headquarters operations to reach the goals of EHE and to perform the following types of work:

• Running a state-of-the-art laboratory.
• Developing, planning, implementing, managing, and evaluating strategies for HIV prevention with state and local public health departments, community-based organizations, and other nongovernmental organizations.
• Monitoring HIV trends and providing the epidemiological investigation and analysis required to support informed prevention efforts and public health action at federal, state, and community levels.
• Conducting HIV outbreak detection and response.
• Conducting research to ensure that proven and innovative tools and interventions are available to prevent HIV.
• Developing, evaluating, producing, and disseminating science-based communications on HIV for the public, providers, and persons at risk of HIV infection to ensure they have the tools needed to protect themselves or their patients from HIV infection.
• Investing in the next generation of public health professionals.
• Improving HIV prevention workforce by increasing the knowledge, skills, technology, and infrastructure needed to implement and sustain science-based, culturally appropriate HIV prevention interventions and strategies.

CDC also said that 9% of the funding will stay at the agency for operations, or around $12.6 million. I appreciate their transparency about funding and hope it will continue. NMAC’s concern was not about the specific number of employees, but rather the building of a government bureaucracy vs. getting the money to the field. NMAC’s goal is to make sure money and programming gets to community because we believe that is where it can make the biggest difference. NMAC and CDC agreed to monthly calls to build better collaboration.

NMAC and CDC agreed to monthly calls to build better collaboration. The first call will be coordinated by NMAC’s Center to End the HIV Epidemic in conjunctions with the 57 jurisdictions prioritized in the EHE plan. This will be an opportunity for them to interact with colleagues from other regions and to ask questions to the CDC.

With the HRSA and CDC funding announcements on the street, NOW is the time to make sure the money gets to where it can make the most difference. If we don’t speak up, decisions will be made that may or may not include community.

NMAC is a small agency working to change the world. We focus on race and its impact on HIV. It’s easy to feel like Don Quixote. Are we chasing after windmills or changing the world? Sometimes they look the same. This may be an impossible dream, but we are still praying for a cure and a vaccine. NMAC believes there is a world without HIV/AIDS, and we are fighting to make that dream real.

Paul Kawata