HIV Patients, Advocates Say the Epidemic Is Not Over

Americans living with the human immunodeficiency virus (HIV) say the epidemic is in dire need of renewed attention and additional government funding.

HIV patients, advocates and medical professionals shared grim feedback during an online listening session on Aug. 15, 2023, hosted by the Health Resources & Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC). Tuesday's session, one of four hosted in recent months, focused on southern states including North Carolina, South Carolina, Georgia, Florida, Alabama and Mississippi.

The meeting was designed to gauge the progress of the "Ending the HIV Epidemic (EHE)" program, a joint collaboration between several government agencies. Established in 2019, the initiative's goal is to reduce HIV infections by 90 percent by 2030, which is less than seven years away.

The general consensus of Tuesday's listening session is that more work needs to be done to fully support Americans living and aging with HIV.

Can heterosexuals get HIV?

That may seem like an obvious question but it's still being asked. Yes, heterosexuals, homosexual and everyone in between are capable of contracting HIV.

HIV is a virus that causes bodily damage when it attacks a person's immune system. Those with active, untreated HIV infections—regardless of their sexual orientation—can spread the virus to others through blood, semen, vaginal fluid, anal mucus and breast milk. The virus can also be spread through contaminated needles.

Without medical treatment, HIV leads to the deadly condition known as AIDS or acquired immunodeficiency syndrome.

Signs of HIV include fever, fatigue and other flu-like symptoms. While there isn't an HIV cure or vaccine, a range of medical treatments exist, including injectables, to keep the virus at bay.

Since the beginning of the epidemic in June 1981, more than 700,000 people have died from HIV/AIDS in the U.S. as of 2018. About 1.2 million Americans had HIV at the end of 2021, according to the CDC's most recent data, and there are an estimated 35,000 new cases each year.

Aging with HIV

A large portion of the commentary heard Tuesday focused on the plight of vulnerable Americans who are living longer, more sexually active lives with HIV.

Malcolm Reid, HIV patient and director of policy and advocacy at Atlanta-based nonprofit Thrive SS said the HIV testing portion of the program needs to abolish its upper age limit of 64.

"I'm 65, I'm having sex, and so are other people my age," he said. "There doesn't need to be an upper age limit."

Reid also shared his concerns about the program's funding.

"We do not need to start cutting funding for people living with HIV while the numbers in certain areas, like Atlanta, are still going up," he said.

Terri Wilder, with New York nonprofit SAGE, echoed Reid's concerns about the age limit on HIV testing.

"The ultimate cost of not removing the upper age limit is that people are going to lose their lives because they are not being tested for HIV and connected to care," she said. "That should never be happening."

An HIV patient for more than 40 years, Jules Levin, 73, of New York City, founder and executive director of the National AIDS Treatment Advocacy Project, described less-than-acceptable HIV care at federally-funded clinics in his city.

"The point I want to make is that care for older people at Ryan White clinics is horrible in New York City," he said. "I'm sure it's similar in many places and lots of people all over the country with HIV tell me it's the same for them in their cities."

HIV providers

Sonya Heath, M.D., of Birmingham, Alabama, frequently works with HIV patients at the University of Alabama Hospital's infectious disease clinic and raised concern about the lack of medical students going into the field of infectious diseases.

"We have a low number of people going into infectious diseases and an aging population living with HIV," she said.

Loan repayment programs may be a way to entice students to pick the field of infectious diseases and ease the workforce shortage, she suggested, emphasizing the lack of Medicaid expansion in southern states has hindered HIV prevention by barring impoverished people from affordable HIV treatment.

Raising HIV awareness

Robin Webb, director of the nonprofit Mississippi Positive Network, told officials hardly anyone in his largely rural state knows of the government's 2019 HIV initiative.

"You can't find 10 people who know what 'End the Epidemic' is in Mississippi," he said. "It's shameful."

He encouraged the CDC and HRSA to hold more opportunities for HIV patients to share their thoughts and concerns.

The bottom line

If you or someone you know is concerned about HIV, seek the advice of a medical professional. To find a local HIV testing site, visit www.hiv.gov.