Posts of: NMAC

Yesterday the House Appropriations Subcommittee for Labor, Health and Human Services, Education and Related Agencies recommended $462 million in new funding for domestic HIV programs. $291 million is set aside for the administration’s initiative to end the US HIV epidemic. While we are a long way from final approval, the bipartisan support was a very hopeful sign. This could be the largest annual increase in domestic HIV funding in over two decades.

If approved, the challenge will be to make sure the funding reaches the communities that are hardest hit by HIV. Far too often, funding gets stuck in the system and does not trickle down to the people and organizations in need.

When the Affordable Care Act was about to be approved, NMAC asked the question to our movement, “Are You Ready?” Agencies that heeded the call and became federally qualified health centers (FQHC) were able to grow and expand to be part of the historic gains in health insurance coverage. Budgets and services quickly expanded and many of these new FQHCs are now integral to the healthcare safety net in their community.

Plans to end the epidemic will focus on a biomedical HIV solution. Priority will be given to programs that retain people living with HIV in healthcare and adherent to meds.  There will also be a push to get 1.1 million Americans on PrEP. Is your agency ready to address either or both of these challenges? Remember, it is all about retention and adherence.

The last big increase in domestic HIV funding was for the Minority AIDS Initiative (MAI). NMAC was there fighting for this funding.  In FY 1999, Congress approved $166 million in new domestic HIV funding. We hoped this money would change the trajectory of new cases of HIV within communities of color. Unfortunately this did not happen. Why should we believe this FY 2020 money will be different?

History and experience are not on our side. Our movement needs to hold the government accountable to make sure this new funding does what the MAI could not. Communities of color must be prioritized. For that to happen, not only must we be at the table, we need to lead the discussions and new programming. It is not OK that 70% of the people on PrEP are white while the majority of new cases of HIV and the majority of people living with HIV are people of color.

Yours in the struggle,

Paul Kawata with Miguelina Maldonado who was the lead staff for NMAC’s work on the MAI.

Thank you for leading the frontline response to ending the epidemic. In the past there were battles between community and health departments. Back then community was concerned that health departments did not understand our reality. We had significant differences in strategy and leadership. Over the last 35 plus years, health departments have hired community leaders, so those battles seems like old news. However, plans to end the epidemic could bring those disputes back into select jurisdictions.

NMAC is developing guides for health departments and community planning council members that outline key issues to ending the epidemic within communities of color. Staff reassigned or hired to put together local plans should reflect the demographics of the local HIV epidemic. Such representation will also help treat the parallel epidemics of hepatitis and STDs.

This graphic was created by the CDC using 2017 data. It does not include the transgender community, American Indians/Alaska Natives, Pacific Islanders, or Asians. Imagine how the table might look if those communities were at the table. It’s not enough to just look at the demographics of planning council members. NMAC believes equal attention should be paid to professional staff, whether they be internal staff or outside consultants. In fact, hiring consultants may be an effective method if local employment procedures hamper hiring internal staff.

Health departments working to end the HIV epidemic should prioritize hiring people living with HIV, people of color on PrEP, gay men (particularly young gay men of color), the transgender community, black women and Latinas, and former drug users. NMAC believes the messenger is as important as the message. Leadership and staff from the communities hardest hit by HIV greatly increases your plan’s credibility. Nothing against white straight cisgender men, but for this effort, you have a different role to play. As I’ve gotten older, I seem to have lost my tact. Selecting leaders from the communities you need to reach sends a message that you are serious about ending the epidemic.

To human resource departments: please hire the most qualified person for the jobs. A core qualification is experience working and living in the communities the plan needs to reach. To end the HIV epidemic, we need to reach very specific communities that have unique and varied cultural values. It is not enough to just be culturally sensitive. If you have no transgender staff working at your health department, then how can the transgender community trust your plan to end the HIV epidemic? Outsiders can be seen as opportunists and not a trusted source of information.

HR needs to understand that they are not hiring a general HIV workforce that anyone can fill. You are looking for people with unique skills. Successful candidates must be able to bring diverse communities to the table to collaborate to build and implement a plan. Too often job descriptions minimize life experience in favor of college degrees. While I have a master’s degree, I will never understand what it means to be a black transgender women living in America and I should never lead or staff a program for them. However, that does not mean I can’t stand in solidarity with transgender community and support their leaders to become the professional staff that our movement needs. If we do this right, ending the epidemic will also be a bridge to professional employment for communities that have experienced generational discrimination.

It’s time to expand what we mean by qualifications and experience. If HR keeps looking in the same places, it is hard to get different people. Yet without community leaders staffing and leading planning councils, this effort could miss key constituents. Too many failures in the past came from smart educated people who had no understanding of the culture and values of the people highly impacted by HIV. Future e-newsletters will discuss some of the wrong paths that our movement has taken and why we need to employ, train, and build leaders from the communities being targeted.

If we are serious about ending the epidemic, then we have to be real about what that means. Sometimes it takes a friend to say something difficult. You know me, I’ve been with you for the last three decades. I’m not doing this to be difficult, I just want to end the epidemic. That means having difficult conversations. HIV’s history is rooted in difficult questions and overcoming impossible odds.

To all the white straight cisgender men whom I love, trust me when I say we all have a role to play and yours is to keep the city, county, state, or federal administration happy. As their peers, you are uniquely qualified. In terms of reaching communities that have eluded decades of previous HIV prevention efforts, you have to listen and work with community. We want you by our side, but sometimes community needs to lead. Solutions to end the epidemic need to work with people outside of your usual cultural references, who may or may not share your values or beliefs. The solutions also need to work for decades or until we find the cure. This judgement is left to be said by the oldest queen in the room. The truth will set you free and create the space needed to end the HIV epidemic!

Yours in the struggle,
Paul Kawata

By Nikki Calma

I was fortunate to receive a scholarship from 50+ Strong and Healthy Program to attend this year’s 2019 National HIV Prevention Conference in Atlanta, GA. It has been a while since I attended this particular conference. I also was given the opportunity to attend last year’s USCA conference thru the 50 + Strong and Healthy Program.

From the moment I arrived at the hotel, it was obvious that people’s energy was really pumped and excitement was in the air. Although there was a big group of folks who arrived late for the entire conference, it was nice to observe folks from different states and organizations greet each other with warmth, catch up, and brag about what’s been going on in their respective programs. I also felt a great rush to see so many trans folks attend this year. Plus, I think there is something good to be said about having this conference in Atlanta and in these two amazing hotels, the Hyatt Regency and Marriott Marquis. Both can accommodate the amount of attendees in terms of conference needs and kept the attendees together, plus the hotel staff has been most courteous and unassuming.

Like last year at USCA, PrEP has been on people’s lips. More so this year at this conference, with a PrEP workshop or research or two that was being presented almost each day of the conference. This is such a good move towards all the initiatives being done by CDC and different cities, I think it is important to always remind ourselves that there are challenges that certain communities may face to access PrEP. For example, the trans community was the last to which PrEP marketing was implemented. Many trans folks have to prioritize their immediate needs around medical transition procedures and to add PrEP may be something that may not be a priority for many.

I was also concerned with all the push for PrEP uptake and information at this conference. It was obvious that many who just got into working in this field may be missing some of the basic history of HIV /AIDS and how we got to get to this day and age of this epidemic. It was nice and refreshing to attend the “Storytelling Sessions.” For me, it put that “human” factor for this conference. In these sessions, I heard amazing stories from people who have been impacted, living with, and worked with HIV. This was such a brilliant feature of the conference. I observed people who smiled authentically, moved with tears, and definitely inspired many. It fed the soul for those who was working tirelessly with their communities around HIV.

Even though we are in a day and age of advancement of treating HIV, for someone like me who loves doing this work and serving the community, it is important to have a strong reminder that the reason I got involved 25 years ago in HIV is because it affected me, my friends, my loved ones, and my community.

April 9, 2019

Dear Dr. Redfield:

One year ago, I wrote an Open Letter asking you to create a federal plan and the necessary funding to end the HIV epidemic in America. Thank you for your response and commitment to make this real.

Last week you spoke at AIDSWatch and got called out by community. Welcome to the family. As a person who gets called out frequently, I know it can be confusing. HIV disproportionately impacts oppressed communities. We speak up and call out leaders because we are hurting. Bob, you’ve worked on the frontlines of the epidemic in Baltimore, so I know you understand. If you didn’t hear it, I want to say thank you for speaking at AIDSWatch. As messy and challenging as community can be, we are the only road to ending the epidemic.

We come from very different worlds, yet this virus has brought us together to collaboratively figure out solutions to end an epidemic. That is the messy part of HIV; people who would normally not socialize have to come together to talk about some of the most intimate matters. I remember going to a retreat where I had to talk about sex with Dr. Jim Curran. I am not sure who was more uncomfortable. Jim blushed and stuttered as told me that in his day, he was a “hot” number. I could see it and I’m sorry Jim for outing you. He shared personal information because he knew it would build a bridge to someone with a very different life experience.

The solution to ending the epidemic is about building bridges with people who are different from you. It’s about understanding that race, gender, gender identity, and sexual orientation are more than classifications. They are the lens that shape our view of the world. Unfortunately, our contributions are often minimized because we are different. Understanding this dynamic is key to ending the epidemic. While the solution is biomedical, it has to happen in oppressed communities that don’t trust the government or the healthcare system. You may not believe your race gives you privilege, but the communities you need to reach would beg to differ. To reach people of color, you have to understand how race impacts our world and the choices we have to make. Just this week there is talk of bringing in the National Guard to St Louis to stop the violence. Let’s get real about what it means to end the HIV epidemic in this environment.

It is not just a matter of prescribing meds. Solutions must address the social dynamics that keep us separate. I get concerned that we will prioritize prescribing PrEP and not address the reality that only 34% of the people who start PrEP stay on their medication longer than 12 months. Why have one third of the people living with HIV fallen out of healthcare or are unaware of their HIV status? The solution is much more complex than handing out drugs.

Early in the HIV epidemic, we quickly learned that the medical model did not work for people living with HIV. As a result, our movement built new systems of healthcare. Thanks to the Robert Wood Johnson Foundation, the continuum of care model became the standard for HIV care and treatment. This new model was created by the HIV community because taking care of people we loved showed that our friends needed more than the medical model could provide. A network of social services like buddy programs, legal services, nutrition, and housing were key to our ability to help people live longer.

The HIV community had to innovate because the old models did not work for us. We cannot afford to go back to a medical model for the solution to end the HIV epidemic. We need solutions that reach gay men, particularly young gay men of color, the transgender community, people over 50 living with HIV, women, particularly black women and Latinas, and drug users. As we learned during the beginning of the epidemic, traditional models do not work when you need to reach oppressed communities.

The Positive Women’s Network, the National Working Positive Coalition, the Sero Project, and other PLWH coalitions fight for the value of “nothing about us without us.” These words apply to people of color, the transgender community, and people on PrEP. In fact, they apply to all the communities highly impacted by HIV. NMAC is concerned that decisions are being made without community. The format for the listening sessions does not allow for meaningful interchange. Leaders at the CDC are making decisions about how community planning will work, which interventions will be prioritized, and what type of capacity building will be used, all important issues that should include community. Limiting community input to community planning misses the whole point. Your process of developing a plan to end the epidemic should mirror the values and principles you ask of the community planning process. It should bring community and government together to make the key decisions.

I’ve been writing my Ending the Epidemic e-newsletter to speak indirectly to the decision makers. Please know how much I want you to succeed, but it won’t happen without us. We are about to attempt the impossible: to end an epidemic without a vaccine or a cure; to reach 400,000 PLWH who have fallen out of care or are unaware of the status and 975,000 more people who can benefit from PrEP. Many of the folks we need to reach are some of the most marginalized in America. They don’t trust the government because they believe the government runs the systems that oppress and discriminate against them.

Thank you for agreeing to speak at the opening of the 2019 United States Conference on AIDS. You should expect similar concerns will be raised; however, I know you will rise to the challenge. This year’s Opening will be staged like the Sunday Morning Talk Shows. You will be interviewed by a moderator. We are trying to get Don Lemon. Maybe we can’t get people to cheer for you, but they also don’t cheer for me. Every year I get called out. Federal leaders need to attend USCA because we cannot end the epidemic without reaching the communities that are highly impacted by HIV. The only way to get to them is through us. A smarter woman might say maybe we should work together.

Yours in the struggle,
Paul Kawata