Remarks by Jesse Milan Jr. at a congressional briefing for National Black HIV/AIDS Awareness Day

In honor of National Black HIV/AIDS Awareness Day, Jesse Milan, Jr., president and CEO of AIDS United, represented the HIV community at a congressional briefing hosted by Reps. Barbara Lee and Jenniffer González-Colón, co-chairs of the Congressional HIV/AIDS Caucus, as well as Reps. Lisa Blunt Rochester and Maxine Waters. Other panelists included speakers from the American Academy of HIV Medicine, HIV Medicine Association and the Black AIDS Institute. 

Read his remarks from the event below. 

“Thank you.

My name is Jesse Milan Jr., and I am president and CEO of AIDS United, a national organization with the mission of ending the HIV epidemic in the United States. We appreciate this invitation to speak because after 40 years of the HIV epidemic it is clear that we cannot and should not address the HIV epidemic without discussing health inequities and the impacts of white supremacy and racism on our efforts to end the HIV epidemic.  

This year, I will be living with HIV for 40 years myself, and so all we’re discussing today is both professionally and personally important to me. That is why on this National Black HIV/AIDS Awareness Day, AIDS United and I are here on behalf of the over 16,000 Black Americans who are newly diagnosed with HIV and the over 483,000 Black Americans living with HIV and the hundreds of thousands of Black people who don’t know their status or are highly vulnerable to acquiring HIV. 

At AIDS United, our HIV policy priorities are guided by our hundreds of grantees and members of our Public Policy Council in literally every state in the Union. They began this year with the foundation set by the new National HIV/AIDS Strategy released nine weeks ago on World AIDS Day. It responds to the advocacy our community has raised for quite some time and provides a roadmap that aligns with many of the priorities AIDS United, our members and partners have needed to end the HIV epidemic.

Racial disparities exist throughout the nation’s health care system. And, as you’ve heard today, the unrelenting disproportionate share of people living with and vulnerable to HIV are people of color, but I want to ensure we name in this space those in the Black community especially at risk for HIV for and living with HIV. They are men who have sex with men — especially younger gay men of color, Black women, Black transgender women, people living in the South and they also include injection drug users and sex workers who are also part of the Black community. We must engineer new programs, re-engineer existing programs to assure that all federally funded programs addressing HIV are working to create greater health equity within all segments of the Black community. 

AIDS United is specifically tackling this issue through the creation of our Racial Justice Index. Partnering with those in the community, the Racial Justice Index aims to create awareness — and eventually sustainable change — around the misalignment between who holds power and resources in HIV organizations and the epidemic’s disproportionate impact on Black Americans. The bold mission of the Racial Justice Index is to assess and improve the HIV sector’s commitment to racial equity by creating assessment tools and resources to combat anti-Black racism and other forms of racism. This includes hiring practices, leadership, talent retention and decision-making in the HIV movement. The index will first be analyzed in PPC organizations and then the larger HIV sector. 

After 40 years of HIV, we do have tools to end this epidemic — prevention, treatment and health insurance are essential parts of that toolbox — but we must have bold leadership to make all of them available to all parts of the Black community. 

Congress and the administration have their own opportunity to take bold leadership when it comes to preventing new HIV transmissions, especially for Black people. We need leadership to ensure access to PrEP, a lifesaving treatment that prevents HIV. Two proposed pieces of legislation, the PrEP Access and Coverage Act and the PrEP Assistance Program Act, are encouraging steps forward ensuring that all Americans have access to this treatment. A Congressionally-created national program aimed to increase access to PrEP will have a major impact on increasing Black people’s awareness of PrEP and their access to its lifesaving powers. 

Access to health care across the entire lifespan and across all states is important for our people as well. I would be remiss if I did not particularly mention the need for policy and political action to close the Medicaid coverage gap. Lack of health insurance is a barrier Black people face year after year and in state after state. In states that have expanded Medicaid, we see lower rates of HIV. It is a critical piece to ending the HIV epidemic. We need to make that possible, especially for Black people in states that, for purely political and even racist reasons, refuse to expand Medicaid coverage to our people.

Access to health care is the first step toward reaching viral suppression.  Viral suppression is not just about us living long and healthy with HIV but also about anyone we’re engaged with on a sexual level — because an undetectable viral load means your HIV is also untransmittable to others. U=U represents a tremendous medical advancement, but too few Black people with HIV are reaching viral suppression and too few Black people are aware of the powerful truth of U=U.

Additionally, we are grateful for your leadership, Congresswoman Lee, in seeking to address HIV criminalization laws that are still on the books in 30 states. These despicable laws contribute mightily to HIV stigma and discourage people from getting an HIV test and entering HIV prevention or treatment programs. And it is no surprise that the people repeatedly prosecuted under these antiquated laws are Black people. We want to thank Congresswoman Lee for her leadership around HIV criminalization, especially for her leadership of the REPEAL HIV Discrimination Act that would help put a stop to these HIV criminalization laws. 

You can look at me and know I’m personally committed to promoting policies to support people aging with HIV. Over 50% of people living with HIV now age 50 or older, and more every day (including me) are heading toward Medicare. More and more Black men and women like me living with HIV will be relying on Medicare as we head into our sixth, seventh and eighth decades of life.  We need your support to make sure CMS and Medicare are ready to support us.  

I want to add that National Black HIV/AIDS Awareness Day is also about the entire Black Diaspora that covers both the domestic and global problems of HIV.  We congratulate you, Congresswoman Lee, for urging that the Global Fund Replenishment Conference come to the U.S. and be hosted later this year in your home district. That sends a strong global signal for our people. 

Appropriations for the domestic epidemic are especially critical now. None of what we need to stop the HIV epidemic at home is possible without a robust increase in HIV appropriations to implement the National HIV/AIDS Strategy. These must include increased support for the Ryan White Program, for HIV Prevention at the CDC and for housing and the HOPWA program in HUD, as well as for continued research.  We have the tools we need, but we need more resources to move us ever faster and closer to ending this epidemic. 

Thank you all for including AIDS United today and for your leadership in Congress.”