Ending the Epidemics in Their Memory

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

$30 for 30 Years

2019 is my 30th Anniversary as the executive director of NMAC (formerly known as the National Minority AIDS Council). Nobody lasts 30 years in the same job anymore. I am a relic of the past and a symbol of the commitment of a generation of leaders who came of age during the early days of the epidemic. Please celebrate my 30th Anniversary by making a donation to NMAC for $30, $300, or $3,000. Your support will help build NMAC’s Center to End the Epidemic.

I came to Washington DC in 1985 to fight an epidemic. It was the start of President Regan’s second term. Margret Heckler, Secretary of HHS, said that we would have a vaccine in five years. I left my family and friends and moved across America not fully understanding how my life would change.

While I have a big imagination, no one could have dreamt of HIV. The horrors of the early days still haunt my dreams. I was just a kid, but I had to grow up quickly. Visiting hospitals, planning funerals, and trying to wrap my brain about a virus that was killing my friends and lovers. That would be my life until 1996 when I attended Dr. David Ho’s seminal lecture on Protease Inhibitors at the International AIDS Conference in Vancouver. Combination therapy moved HIV from a death sentence to sometime more manageable; however, let’s not pretend living with HIV is easy.

We are about to attempt the impossible: to end an epidemic without a cure or vaccine. For those of us who were part of the early days, this is a full circle moment. NMAC needs your support to be the leaders our movement needs. To speak truth to power requires nongovernment money. Please help me celebrate my 30th Anniversary with a gift of $30, $300, or $3,000. It is my honor to be NMAC’s executive director.  Thank you for being part of this journey.

Yours in the struggle,
Paul Kawata
30 Years of Service

 

 

 

 

 

 

 

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

House Oversight Committee to Hold Hearing on Gilead’s Exorbitant Price for 
HIV Prevention Drug – On Thursday, May 16, 2019, at 10:00 a.m., the Committee on Oversight and Reform will hold a hearing on “HIV Prevention Drug: Billions in Corporate Profits after Millions in Taxpayer Investments.”

U=U vs. TasP

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.

Yours in the struggle,

Paul Kawata
30 Years of Service

 

 

 

 

 

 

 

 

Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

House Oversight Committee to Hold Hearing on Gilead’s Exorbitant Price for 
HIV Prevention Drug – On Thursday, May 16, 2019, at 10:00 a.m., the Committee on Oversight and Reform will hold a hearing on “HIV Prevention Drug: Billions in Corporate Profits after Millions in Taxpayer Investments.”

The House Roars

Most of us never read congressional committee reports; however, a subcommittee of the House Appropriations Committee (then click on FY2020 Bill Report) wrote language that could change the course of the HIV epidemic in America. We still have an uphill battle in the Senate. NMAC is very concerned about the Budget Control Act caps. Below is the actual language (in boxes) from the House report, starting on page eight of the 346-page report.

 


HIV INITIATIVE

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.


NMAC and the Partnership to End the Epidemics submitted policy language for the subcommittee to consider. Read the  full report (click on FY 2020 Bill Report), there are many additional recommendations on HIV as well as STIs and Hepatitis. The language is important because federal agencies are required to follow these directives. However, the Senate could add additional directives and the differences will need to be worked out in conference. Here are some of the items that caught NMAC’s attention:


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.

2020 AIDS Conference. —The Committee recognizes the United States is hosting the International AIDS Conference for the first time since 2012. The Committee includes $5,100,000 for the U.S. contribution to the AIDS2020 Conference.

Office of AIDS Research. —The Committee directs NIH to increase funding for HIV/AIDS research by at least the same percentage as the increase in NIH overall funding. The Committee recognizes that OAR’s AIDS allocation to each IC is based on scientific need and opportunity. Therefore, individual IC AIDS budgets may not each grow at the same rate, but total AIDS and non-AIDS funding will continue to grow at a comparable rate.

Sexual Risk Avoidance. —The Committee includes no funding for grants to implement education in sexual risk avoidance, also known as abstinence-only until marriage programs.


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.

Yours in the struggle,

Paul Kawata
30 Years of Service

 

 

 

 

*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.
Important Happenings in HIV/Health Policy

Important Happenings in HIV/Health Policy

FY20 House Labor-HHS Appropriations Summary (Upcoming Fiscal Year) – On April 29, 2019, the House Appropriations Committee released the draft fiscal year 2020 (FY20) Labor, Health and Human Services, Education, and Related Agencies (LHHS) funding bill, which included the following funds for federal HIV programs

As a Gay Man and Person of Color…

I’ve had to learn how to survive society’s contradictions. Even though it shouldn’t matter, the color of my skin impacts people’s perception of my value. People might assume I’m straight until I open my mouth. Being gay means more judgements that have nothing to do with my actual worth. These are the contradictions that face the communities we need to reach to end the epidemic. Daily, they must negotiate a world that minimizes them because they are different. HIV impacts some of the most stigmatized communities in America. Our programs to end the epidemic must reach gay men, particularly young gay men of color, the transgender community, black women and Latinas, and drug users.

Last week the administration released the “conscience rule” for health care providers. This federal rule lets people discriminate based on their personal beliefs. At the same time, $291 million was recommended by a House Appropriations subcommittee to support the administration’s plan to end the HIV epidemic. The irony of this contradiction is not lost on NMAC. On one hand the administration wants to end the epidemic; on the other hand, they want to codify discrimination in HHS-funded programs against the same people they need to reach to end the epidemic.

While NMAC is very thankful for the federal government’s commitment to end the HIV epidemic, that does not mean we give up our values or our voice. Our movement must speak out against injustice. It is the only way to lead. I live with and manage society’s contradictions on a daily basis. I’ve learned how to work with the administration to end the epidemic and call out policies that are unjust.

Our plans must reach people who know they are HIV-positive and still don’t see a doctor. This contradiction is also not lost on me. According to the federal plan there are 400,000 Americans living with HIV who have fallen out of care or are unaware of their HIV status. Given the stigma and discrimination these communities face, it is easy to understand how the conscience rule is not helpful to our work.

To all my friends in the federal government, I know you walk and chew gum at the same time (I stole that line from Terrence Moore @ NASTAD) to fight to end an epidemic while enforcing the conscience rule that hurts the people we need to reach. Can you understand why community might need you to take a back seat? Not ending the epidemic means 40,000 new cases per year as HIV continues to overwhelm communities already marginalized by life. This is why ending the epidemic will be one of the greatest tests of our leadership.

 

Yours in the struggle,
Paul Kawata