Black History Month – Dr. Joyce Turner Keller

By Terrell Parker, NMAC Associate  Program Manager

History is best told by those who lived it. However, so much of the early history of Black people  in the movement has been shrouded in secrecy due to shame and stigma. This year, for Black History Month, we are exploring the Black community’s impact on ending the epidemic by highlighting the Black History makers in HIV Past, Present, and Future.

Dr. Joyce Turner Keller is a 68-year-old HIV-positive woman, who resides in Baton Rouge, Louisiana.  She is the Founder & CEO of ASPIRATIONS, a nonprofit HIV service organization, and an artist, advocate, community organizer, motivational speaker, writer, actress, producer, and director.  She has served as CEO of Positive Diva and Positive Dude Productions, and Spiritual Leader of the Travelers Of Christ Evangelistic Ministry for 53 years.

What made you join the fight? 
After I was diagnosed with AIDS in November of 2001, I thought it was critical that my community should see someone like me publicly living with and speaking out about the a pandemic of new infections and the risk of becoming HIV-positive. I wanted them to know HIV did not ask for a resume.


Who were the leaders in HIV that you remember the most from the early days of the movement?
The leaders I remember in the early days of my fight are Myron Solomon, Shirley Lolis, A.J. Johnson, Phill Wilson, Frank Oldham, Paul Kawata, Charles King, Larry Bryant, William “Bill” Arnold, Christopher Bates, Nancy Wilson, and Eugene Collins.

Is there anyone who you looked up to as a mentor? 
A. J. Johnson of BRASS , William “Bill” Arnold, Frank Oldham, and Circe LeCoompte
 
What hadschanged the most about HIV from when you were first diagnosed to now?
The local activity is not as visible and events are not as plentiful.  The message of advocacy is not supported as strongly.

In what ways have you been a part of history? 

I am a part of the History of HIV as a visible advocate. I use art, community organizing, and theatre to address stigma in churches. As a minister I am inclusive of all genders, race, and religion.  I am a part of History because of my written and spoken words of injustice and discrimination.

What is your biggest accomplishment working in the fight to end HIV?  
My biggest accomplishment working to end HIV is helping to eliminate stigma, educate and test for HIV, share my experience as a professional, heterosexual minister and Black woman, and have my voice heard on a global level in PSAs and documentaries.

What advice would you give to the next generation of leaders fighting to end HIV?
The fight to end HIV will take all of us.  I will tell the next generation that they are a value that cannot be compared to any other source, for we need their vision and passion to move forward and win this war.

What’s In A Name?

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

The President’s Budget

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
Centers for Disease Control and PreventionTwo 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.

Yours in the struggle,
Paul Kawata
Paul Kawata

 

Ending the HIV Epidemic / Ending it Together

By Terrell Parker, NMAC Associate  Program Manager

Terrell ParkerEach year, National Black HIV Awareness Day takes place on February 7 to promote HIV prevention, testing, treatment, and community involvement in black/African American communities. Around the country, advocates, community organizations, health departments, health centers, and federal partners are racing to do what was once thought as unthinkable, ending the HIV epidemic. As we work towards doing the unthinkable, one question continues fueling dialogue from the local communities to federal partners: “How do we end the epidemic in the community most burdened by the highest rates of new HIV acquisition and the community viral load; how do we end the HIV epidemic in the Black community?”

The data shows us that in 2020, Black people currently bear the heaviest burden of HIV.

  • Blacks/African Americans accounted for 43% of all HIV diagnoses in the United States in 2018.
  • In 2017, Black/African American women accounted for 60% of all new HIV infections in women in the USA.
  • The CDC estimates that  ½ Black gay and bisexual men will contract HIV within their lifetime

This year’s theme for Black HIV Awareness Day is “We’re in it Together.” We asked some of our constituents what does “We’re it together” mean to the Black community and how do we ensure that we indeed end the HIV epidemic in this community? Here are some of their responses;

“We’re in it together” means willingly working together as a beloved black community to eradicate HIV/AIDS despite cultural differences. Literally Doing it for the culture in perspective.” – Scorro “Cori” Moreland

“We’re in it together is a mantra that each one of us is needed to end this epidemic.   Taking ownership of our health is vitally important for each of us to live our best lives. U=U is a communal way end it together.  We ensure they Black communities have access and opportunities for equitable.  Access means that resources are available.  Opportunity means that they are available to me.” – Tori Cooper, AA Constituent Advisory Panel

“We’re in it together means being on the same page as a Black community, using our voices, and working together with community organizations, health departments, and health care entities to make it happen. It means bringing the people and the resources together to end HIV.” – X Advocate

As we embark on our National Black HIV Awareness Day events and work to get individuals tested, linked to care, and linked to PrEP, it’s important to remember the theme for this year. If we are going to end the HIV Epidemic, it is important that we end it together, not in silos. This will take our systems working together, our resources working together and most importantly, our people working together.

Changing Our Name to USCH

NMAC is changing the name of the United States Conference on AIDS to the United States Conference on HIV. AIDS is considered stigmatizing language to many people living with HIV and the last thing we want to do is add to their discrimination. This is especially important because we need to reach 500,000 more people living with HIV if we want to end the domestic epidemic. Please watch this important video about the 2020 meeting!

Join us October 10-13 in San Juan, Puerto Rico. The web site for the 2020 USCH is now live! The 2020 theme is Luchando Por Nuestras Vidas (Spanish for Fighting For Our Lives). The theme honors our past and speaks to the future. Unfortunately, luchando por nuestras vida is what the people of Puerto Rico do daily. The theme also speaks to the struggle facing people living with HIV and people on PrEP. We are all connected in the fight for a fair and just world.

The 2020 meeting will serve Puerto Rican and US Virgin Island realness to educate about the challenges of reaching people who speak different languages or have different cultures and values.

The 2020 meeting is in San Juan to 1) provide economic development in a country devastated by Hurricane Maria and the recent earthquakes, 2) give attendees the experience where English is not the primary language, and 3) learn about the rich Puerto Rican and US Virgin Island cultures as a way to value differences.

This image of doors in Old San Juan gets at the message for this meeting. We are all different and beautiful in our own way. Our movement is about the diversity of the doors and how to value and honor differences.

 

San Juan Convention Center

 

 

 

In order to hold the meeting in San Juan, we had to move to the Puerto Rico Convention Center. It is the only site big enough for USCH. I was just there for a planning meeting with the Puerto Rico Host Committee. They are so excited to share their story of overcoming the challenges of weather, earthquakes, and HIV.

 

 

 

 

Just in time for USCH, a new entertainment center, El Distrito, will open next to the convention center. El Distrito will have inexpensive dining options, a movie theater, concert hall and an Aloft hotel. Phase I of the complex is slated to open in March.

Registration
Registration is now open. You must register before you can make your hotel reservation if you want to be part of the conference block. Early bird registration fees are $490 for NMAC members and $625 for non members.

Hotel Accommodations
There are no hotels big enough to host USCH in San Juan. As a result, multiple hotel blocks will be available for attendees. While not ideal, it was the only way to bring the meeting to Puerto Rico. You must register for the conference in order to gain access to the block. Rooms will be set aside for scholarship recipients.

 

 

Most attendees will stay in one of two hotels. The Sheraton Puerto Rico is the host hotel and is located next to the convention center. Rooms at the Sheraton are $179 per night (plus taxes). We also have a block at the Caribe Hilton. This hotel just reopened; it was destroyed by Hurricane Maria in 2017. Rooms at the Hilton are $199 per night (plus taxes). The Hilton is located on the water a little further from the convention center. Buses will be provided to get people from the Hilton to the convention center. Hotel rooms are limited, so please register early.

For people needing less expensive accommodations, NMAC recommends Airbnb. On that site we found many reasonable places to stay near the convention center. Rooms and whole apartments can be found for $65 per night (plus taxes and fees). Unfortunately, San Juan is hurting for business. Air travel and accommodations are very reasonable. There is a direct flight out of DCA that is less than $300 (r/t). Our goal to bring economic development is real. In the near future, we will provide a list of local vendors for exhibitor and sponsors. Our hope is that everyone uses local companies, The people and businesses in San Juan need our help.

2020 Plenaries

  1. HIV in the Latinx Communities. This will be a Spanish language plenary with simultaneous English translation on the screens.
  2. Gilead Plenary
  3. Federal Update
  4. Proof of Concept that Biomedical HIV Prevention Works

The Opening honors Puerto Rico in food, decor, speakers, and language. It will represent the diversity of Puerto Ricans and Latinx who are working to end the HIV epidemic. This will be a Spanish language plenary with English translation on the large screens as a crawl at the bottom of the screen. It will feature Puerto Rican Salsa and Bomba y Plena music

2020 Workshops
There will be a Spanish language track of workshops. In fact, the Call for Abstracts is in both English and Spanish. One of the new tracks is on Geriatric HIV Services. As PLWH age, it is time to relook at the mix of services our movement provides. During the early days, no one could have imagined the need for these services.

Child Care
NMAC will again provide child care. Like geriatric HIV services, child care was not on our radar in the early days. Now so many HIV positive people have children. It is a joy and honor to provide child care for them.

Opening Reception
The folks in PR are having real financial challenges, so it is not reasonable for NMAC to ask them to cover the same expenses as a typical host city. The host committee will be asked to put together the reception’s program that highlights the many cultures of Puerto Rico. NMAC is still trying to figure out how to cover the cost of food.

Guayaberas Shirts
NMAC staff will wear Guayaberas on the first full day of USCH. A guayabera is a traditional Cuban shirt. The origin story tells of a poor countryside seamstress sewing large patch-pockets onto her husband’s shirts for carrying guava from the field. NMAC staff will wear guayaberas to honor the history and legacy of this shirt. We will put the 2020 theme, Luchando Por Nuestras Vida, on the back of the shirt.

Scholarships
The scholarship section will go live on March 3. Last year we had challenges and many constituents were not happy with the results. This year NMAC has committed to double the number of A&B scholarships. However, given the number of applications we receive (more than 1,200), most people will be turned down. Do not depend on a USCH scholarship, Try to find other ways to get to the meeting. The website will share alternative ways to support your travel.

In our efforts to end HIV we must value and honor the cultures of the communities we are trying to reach. HIV impacts very specific communities. These are not general campaigns trying to reach everyone; these are targeted efforts. While the geographic targets are most obvious, within the 57 jurisdictions there are additional targets needed to end the epidemic. Understanding the values and cultures of the communities hardest hit by HIV is key to our success.

See you in October.

Yours in the struggle,
Paul Kawata

Nothing About Us Without Us

Our movement is about to have a large influx of new cash. Over the next few months, hundreds of millions in new federal funds will go to the 57 jurisdictions and beyond to end the HIV epidemic in America. It was not an easy task to get new money during the Trump administration and now we need to make sure that resources get to where they are most needed.

The nearly $300 million in new funding mandates greater scrutiny by everyone impacted. Decisions will be made that could determine the future of health departments, community-based organizations, health centers, researchers, national organizations and pharma. Will the new funds get to the communities hardest hit by HIV or will it be used to increase the bureaucracy?

Decisions will be made that could upend the service mix for people living with HIV. Currently, around 700,000 people living with HIV are in healthcare with various degrees of viral suppression. The goal is to add 500,000 more people into the system and to have them be virally suppressed. Additionally, the plan will enroll 900,000 more people onto PrEP. To reach these large numbers, health systems and services need to be expanded. Systems must reach thousands if not tens of thousands more people. Most of the targets come from the most marginalized communities in America. Beyond race, gender, or gender identity, these communities battle depression, drug and alcohol use, and mental health issues.

Last week CDC released their new NOFO (CFC-RFA-PS20-2010) to get the new appropriations to state health departments. $109 million was made available for 48 awards. Since CDC’s Ending the HIV Epidemic appropriations was $140 million, what are they doing with the other $31 million? Transparency is key to our continued collaboration.

Last week I officially joined the grumpy old men’s club when I talked about the nearly 800 staff in CDC’s Division of HIV/AIDS Prevention. The number pushed my buttons because NMAC has nearly 20 staff. Like most community focused organizations, we’ve had to learn magic. The agency has a huge job but must live with limited resources. We’re lucky because we survived. How many organizations, particularly within communities of color, have closed?  The irony is that we need those agencies now more than ever. Ending the epidemic requires us to reach communities that have eluded previous efforts. Agencies created to support many of our targets closed down over the last 10 years.

NMAC played a critical role the last time our movement saw significant new resources. The Minority AIDS Initiative was funded by Congress in 1998 to build and support minority community-based organization. NMAC, through the important work of Miguelina Maldonado, worked diligently with the Congressional Black and Hispanic Caucuses to craft the legislation. Over time funding from the MAI was reprogrammed for non-minority issues. NMAC is concerned that we don’t repeat history by taking money meant for ending the epidemic and using it for other purposes.

I’ve worked with HHS, CDC, HRSA, and NIH since the 1980s, I remember all the decisions, good and bad, that were negotiated. Far too often community had no voice while funding was reprogrammed. Not this time. We get nothing by being quiet. Over the next six months, decisions will be made that impact our ability to end the epidemic. However, it won’t happen if we can’t reach the 500,000 people living with HIV and get 900,000 more sexually active people on PrEP. This is a huge task that requires real leaders who can work collaboratively with Community. And those leaders making the decisions must reflect the Community that they are serving. Otherwise, we will continue to make the exact same errors that have made the HIV Epidemic what it is today. Dr. Redfield’s mantra of needed Disruptive Innovation cannot ever become reality if we do more of the same.

Yours in the struggle,
Paul Kawata

Will Federal HIV Money Reach Communities in Need?

As our nation remembers Dr. Martin Luther King, Jr., NMAC stands in solidarity with him when he said, “Of all the forms in inequality, injustice in healthcare is the most shocking and inhumane.” Our fight to end the HIV epidemic is a fight for justice and equality in healthcare for some of the most marginalized people in America.

Now that we have the 2020 federal appropriation and budget line item to end the HIV epidemic, the real work begins. Figuring out how to bring the promise of biomedical HIV prevention to all the communities that are highly impacted by HIV. There is almost $300 million in new funding to figure out that answer. While it is not enough money, it is definitely a good start.

NMAC is very concerned that the money will not get to the communities in greatest need.

Last week the Centers for Disease Control and Prevention announced that they were looking for a new Director for the Division of HIV/AIDS Prevention, in this announcement the CDC noted that this division has nearly 800 employees. While I’ve not done any analysis of the 800 employees, I am very concerned that on its face that number seems excessive, particularly when there is so much need in the field. This is only one division at CDC. There are staff in other CDC divisions that are also supported by HIV funds. Are we building real solutions or just more federal bureaucracy?

If we did a review of the number of HRSA’s Bureau of HIV/AIDS employees, would we see a similar number? What about HUD’s HOPWA program or SAMHSA? Oversight of federal funds is necessary and essential to monitor the programs and expenses. However, the solution to ending the epidemic happens in community. That is where the work force needs to grow and be developed, not Atlanta.

It’s time for transparency. HHS, how many federal employees are supported by federal HIV funds and what is the plan for the new money to end the epidemic? What percentage of those dollars will go to the field? How many more staff will CDC, HRSA, or SAMHSA hire to monitor the new funding? We will never end the epidemic if the money gets stuck in the bureaucracy.

I have similar concerns about some health departments. How many more health department employees will be hired with the new HIV funds? If we are going to reach 500,000 more people living with HIV and get 900,000 more people on PrEP, then vast majority of the funding needs to support the health infrastructure and services in communities that are hardest hit by HIV.

Dr. Redfield, it’s time to do an internal review of CDC’s use of HIV funds before one is mandated by Congress. How many employees does it take to monitor and evaluate federal funding versus the staff needed in community to end the epidemic? Your commitment to disruptive innovation needs to start in Atlanta. Do you need all these employees, or would our efforts be better served by building the infrastructure in the communities working to get PLWH back into care and sexually active adults onto PrEP?

NMAC wants to work hand in hand with the federal government to end the HIV epidemic and that means making sure the new funding gets to where it is needed. Maybe you do need 800 employees in one division at CDC. I’ve not done a review. From the outside it looks excessive, especially when there is so much need in community. Our fight to end the HIV epidemic is a fight for equality and justice in healthcare.

Yours in the struggle,
Paul Kawata

A New Day at NMAC

NMAC’s ongoing commitment to our constituents requires us to evolve with the challenging atmosphere in Washington.  As we continue to address these challenges, NMAC is incorporating several initiatives and platforms to help us meet those challenges.  I’m happy to share with you this update on the happenings in NMAC’s Government Relations and Public Policy (GRPP) department.  One of those platforms is PoliticoPro.  This tech platform has allowed us to have close to 4000 engagements with Hill staff.  This includes direct emails to Legislative Directors, Chiefs of Staff, and Legislative Assistants.     

We are also developing a longterm strategy plan – to that end, NMAC is pleased to announce fundamental changes to our GRPP department.   

First, NMAC entered into a formal agreement with George Washington University and, as a result, hired two public policy fellows, Linden Yee and Brianna Elghart.  Both Linden and Brianna bring a strong policy background and a driven passion for social justice.  I recognize that in order to drive policy, it will take the efforts of not only talented policy experts; it takes stakeholders who recognize that our cause is worth fighting for.  I’m very pleased to announce that NMAC and Kelley Drye, a powerful D.C. law firm, has entered into a pro-bono contract.  Kelley Drye brings a strong commitment to policies related to minority health, especially in the area of HIV.  As our relationship with Kelley Drye matures, I’m excited to share our goals and successes with each of you. 

Second, On October 17, 2019, our community lost a legend – Congressman Elijah Cummings.  As we continue to mourn his passing, NMAC wants to honor his legacy.  On June 11, NMAC will host its Hill Champions Awards Ceremony.  Since his passing, we worked with his Chief of Staff, Vernon, and his wife, Maya, on dedicating our highest award in his memory.  This year, the Elijah E. Cummings Award for Minority Health Equality will be awarded to Rep. Barbara Lee.  As you know, Congresswoman Lee has been our strongest champion on the Hill.  As Co-Chair of the Congressional Caucus on HIV/AIDS, Congresswoman Lee has a long record of fighting for funding and justice for people living with HIV.  We hope you will be able to join us in June for this well-deserved recognition of Congresswoman Lee.  For more information, please email me at JHuang-Racalto@NMAC.org

Third, NMAC is meeting with the United States Senate Special Committee on Aging to explore ways to address the ongoing crisis of seniors living with HIV.  This population is largely overlooked and continue to face unique health challenges.  I would like community input.  If you have a specific question for committee members, please email me.  As we continue to work with this committee and other members of Congress, I’ll post updates on the latest happenings and how you can help. 

Fourth, NMAC recently welcomed an early champion, Timothy Westmoreland, to discuss the struggles he faced in the ’80s as a senior staff member to former Chairman Henry Waxman.  His compelling story gave us all pause for what it was like in an era when President Reagan repeatedly put up roadblocks on CDC officials, and Congress was deeply, horrifically homophobic.  

Finally, as you can see, NMAC is fine-tuning our policy department.  As we continue to aggressively lobby Congress for increased funding, we remain committed to ensuring policies relating to HIV/STI’s, and minority health disparities, remain on the front burner.     

Joe Huang-Racalto
Director Government Relations | Public Policy
JHuang-Racalto@NMAC.org 

The Heavy Lift

Our movement has a heavy lift for 2020: full funding for the federal effort to end the HIV epidemic in America. The money is essential to support the 57 jurisdictional plans submitted at the end of 2019 (only 53 jurisdictions submitted plans). As NMAC noted earlier, the nearly $300 million in new funding for 2020 was just a down payment.

Do we have the capacity to make this real? If we are serious about ending the domestic epidemic then, beyond the science and reaching communities that were previously missed, it takes money. Without the money, our movement cannot bring to scale the programs needed. Remember we need to reach 500,000 people living with HIV and 900,000 more people who would benefit from PrEP.

Scale will be an important driver of our work. Do the new initiatives reach thousands if not tens of thousands people living with HIV and/or people who could benefit from PrEP? Programs that reach hundreds will not be sufficient. Working off the herd theory of immunity, we need to get large numbers of people living with HIV to undetectable and even larger numbers of people on PrEP.

Where To Start?
From NMAC’s perspective, jurisdictions should follow the data. What does the data say? Not just HIV data. It is important to look at STD and hepatitis data sets. There is an epidemic of STDs. If you overlay states with the highest gonorrhea rates per capita:

and the states with the highest syphilis rates:
and the states with more than half of the people living hepatitis C. Those states include California, Florida, Michigan, New York, North Carolina, Ohio, Pennsylvania, Tennessee, and Texas.

and finally, the states with the highest rates of HIV per capita:

Florida Mississippi, Louisiana, Georgia are in the top 10 for gonorrhea, syphilis, or hep C and HIV. South Carolina, Alabama, and Nevada are in the top 10 for HIV and gonorrhea or syphilis and North Carolina is in the top 10 for gonorrhea, syphilis, and hep C. Jurisdictions in these regions must prioritize STD/HIV/hep C testing sites, health centers, and community organizations that provide tests. Everyone who is tested should also be counseled about U=U and PrEP. Treatment on demand for U=U or PrEP should be available. History has shown that we lose too many people when they have to wait or return to find out results or treatment.

Since the infrastructure is already in place, these services can hit the ground running using existing agencies. There needs to be funding to hire and train staff. While this will work for people willing to access healthcare systems, new structures are needed for those communities that have trust issues. This is where Dr. Redfield’s disruptive innovation will be important.

Need Your Help
It takes money to end the HIV epidemic. It also takes money to support the efforts in Congress for the necessary appropriations. While, historically, our movement has been very effective managing the HIV portfolio on the hill, the need for full federal funding will require unprecedented cooperation and collaboration between the many organizations with a DC presence.

For the last three years in partnership with AIDS United, NASTAD, NCSD, and The AIDS Institute, NMAC has used the services of outside lobbying and communication firms for the partnership’s joint policy efforts. Our collaboration pushed HHS to build the plans and raise the funding to end the epidemic. This year, in addition to existing partnership firms, NMAC will bring on the pro bono services of Kelley Drye. Kelley Drye has more than 125 lawyers, government relations professionals, and economists based in the DC office. NMAC has retained their pro bono services to support our efforts to end the HIV epidemic in America.

AIDS United’s AIDS Watch is coming to DC March 30-31 and is so important this year. At this event, HIV advocates from around the nation join efforts to directly engage our elected officials to bring better services and research to stem the HIV epidemic. And on April 1, NMAC is partnering with health organizations from around the nation to discuss the state of pharmaceutical and other private funding in the HIV field and its explicit or implicit influence on our collective work.

While federal money is critical, that is just the government’s portion. Can the private sector match this amount? There are many efforts that the government cannot cover, including all of the work in Congress. Now is the time for the private sector to step-up. Who will be our champion?

Yours in the struggle,
Paul Kawata

Paul Kawata