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HIV is highest among African-Americans. This advocate is working to change that.

Jesse Milan, Jr. has been living with HIV for more than three decades and is fighting to stop its' spread through his organization AIDS United.
Image: Jesse Milan Jr., president and CEO of AIDS United, takes part in an AIDS Watch advocacy event
Jesse Milan Jr., president and CEO of AIDS United, takes part in an AIDS Watch advocacy event on Capitol Hill in Washington, D.C. on March 28, 2017.AIDS United

Launched nearly 30 years ago, World AIDS Day is observed annually on Dec. 1. Since its inception in 1988, the goal has been to raise awareness about HIV/AIDS and commemorate the 35 million people who’ve lost their lives to the epidemic.

Today, nearly 1.1 million people in the U.S. are living with HIV, according to the Centers for Disease Control and Prevention (CDC) — one in seven individuals aren’t aware they are infected. It is estimated more than 36 million people were living with HIV/AIDS worldwide in 2016.

Jesse Milan, Jr., is president & CEO of AIDS United, a national nonprofit dedicated to ending AIDS in America. A licensed attorney with a law degree from New York University, he is one of many African-Americans fighting the disease via advocacy, research, and education.

Milan says he has been "living and thriving" with HIV for more than three decades. He currently serves as Chair Emeritus on the Black AIDS Institute board of directors and on the Scientific Advisory Board for the President’s Emergency Plan for AIDS Relief (PEPFAR). He previously co-chaired the CDC’s Health Resources and Services Administration (HRSA) Advisory Committee on HIV and STD Prevention and Treatment (CHAC).

We spoke with Milan about the impact of HIV/AIDS on people of color, the importance of testing and new initiatives.

[This interview has been edited and condensed for clarity.]

NBCBLK: What is AIDS United’s mission and how do you achieve your goals?

Milan: Our goal is to end the AIDS epidemic in the U.S., through strategic grant-making, capacity building, formative research and policy. We do a lot of work on The Hill. We provide access to life-saving HIV/AIDS care and prevention services and advance sound HIV/AIDS-related policy for populations and communities most impacted by the epidemic. To date, our strategic grant-making initiatives have directly funded more than $104 million to local communities, and have leveraged more than $117 million in additional investments for programs that include, but are not limited to HIV prevention, access to care, capacity building, harm reduction and advocacy.

A new effort is The Southern HIV Impact Fund which is making an initial investment of $2.65 million in support of 37 organizations in nine states: Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee, and Texas. It has already mobilized an additional $150,000 in emergency support for people living with HIV in hurricane-impacted areas of the region, including Texas and Florida. AIDS United is managing the fund.

Has progress been made in the fight against HIV/AIDS?

Yes, we are making progress in some ways. CDC data says there’s an 18 percent reduction in new infections, which is a really good story. However, new infections are not the same as new diagnoses. Diagnoses indicate when a person is diagnosed with HIV or AIDS, not when the person was infected. According to new CDC data, among persons with HIV infection diagnosed in 2015, the estimated median interval from infection to diagnosis was three years. While this is an improvement from previous reporting, persons unaware of their HIV infection are estimated to account for a staggering 40 percent of ongoing transmissions in the United States.

But among all the different groups with HIV/AIDS, there’s not a decline among African-American and gay men of color. In terms of new diagnoses, the disproportionate impact is continuing among African-Americans and people of color.

"Around 42 percent of Americans living with HIV who are in care depend on Medicaid, so any actions by Congress to roll it back threatens the health and livelihood of this community."

Among African-Americans which demographic is most impacted?

While overall we're seeing a general decline in new infections, they’re rising among Black gay and bisexual men, Latino gay men, and gay men of color. Among Black and Latino gay men under 24, those are where infection rates are not going down.

The infection rates are going down with African-American women. African-American women have done a good job of preventing new infections. But of women living with HIV, they are still the largest number of women overall. The caveat is this, when we look at who is living with HIV, overall Black men and Black women are not doing very well.

You indicated communities of color, the LGBTQ community, and certain regions nationwide are being dramatically affected by this epidemic.

Unless we win in the South we will not win our national goals. A substantial number, about 40 percent of people with HIV, live in the south. The region accounts for the largest numbers of new infections, and about half of all new diagnoses. It’s compounded by lack of access to health care.

President Donald Trump’s World AIDS Day Proclamation noted the President's Emergency Plan for AIDS Relief (PEPFAR) and investments in partnership with 50-plus countries that help support 13 million people with lifesaving antiretroviral treatment testing initiatives and other strategies. How do you think the Trump Administration is doing with its HIV/AIDS policies?

I think this Administration and this [GOP controlled] Congress are trying to destroy the means for accessing treatment and prevention. Besides the threat to the ACA, many policies and programs are at risk with proposed budget cuts such as CDC HIV prevention programs and National Institutes of Health (NIH) AIDS research.

The current GOP tax plan could potentially impact Medicaid, the Secretary’s Minority AIDS Initiative Fund (SMAIF), Substance Abuse and Mental Health Services Administration’s Minority AIDS Initiative (MAI), Housing Opportunities for Persons with AIDS (HOPWA) Program, and the Ryan White Program.

Recent efforts to repeal/replace and roll back Medicaid threaten to undo the progress. Around 42 percent of Americans living with HIV who are in care depend on Medicaid, so any actions by Congress to roll it back threatens the health and livelihood of this community. And almost all the states in the south, with the exception of Louisiana, have not expanded Medicaid which basically closes the door for, say, a single man to receive treatment.

HIV testing remains important, correct?

Yes. Knowing your HIV status is really a deterrent to you spreading the disease. The gold or platinum standard is for people to achieve viral suppression by taking your meds consistently. Then the virus is literally undetectable. If you achieve an undetectable viral load, you are not capable of infecting someone else. Thanks to biomedical advances you can be on the way to living a long and healthy life.

In the U.S. of the 1.2 million people living with HIV, less than half have achieved viral suppression. Globally there are about 36 million with HIV/AIDS; about a third have achieved viral suppression.

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