New tools improve fight against HIV, AIDS yet La Crosse experts say stigma slows diagnoses

The AIDS epidemic that began in the 80s is one of America’s biggest scars. Mark McDougal, Criss Gilbert and Eddie Luker highlighted how LGBTQ+ people were treated during the crisis. The gay men spoke Thursday ahead of World AIDS Day on Friday to about 15 people at the Transform club at UW-La Crosse.

“So many people dying. We were really in shell shock. It was really a warlike trauma — it was a battle because there were no services for any of us in our community,” said Luker. As AIDS patients were stigmatized and isolated, people only had themselves to turn to for help.

“When the first family choice member I knew got AIDS, we turned our apartment into a hospital room to take care of him,” Luker said. “We did round the clock care for him because there was nothing else out there going on.”

McDougal recalled his own work helping friends with simple tasks like cleaning and making food when nobody else would.

“Most of all, you spent time with them because nobody else would make contact with them. As soon as somebody got sick, they got written off because you know that in the week or two that they were sick they would be gone,” McDougal said.

As more people banded together, organizations were born to take action. Luker started the first ACT UP chapter in Philadelphia. ACT UP, the AIDS Coalition to Unleash Power, is a group dedicated to direct action for AIDS medical research. ACT UP would disrupt traffic, conduct “die-ins” at health facilities and commit other civil disobedience in order to be heard by a national audience.

One of the biggest blockades of medical progress in HIV and AIDS was stigma, he said.

“One of the great benefits of ACT UP is the way we now do clinical trials, especially when there is a health emergency,” Luker said. “Before AIDS, it would have taken years for health treatments to become available in emergencies. The whole fast-tracking method has changed because of what ACT UP did.”

The stigma around the HIV virus that causes AIDS has significant impact on the broader population even today, as is prevents many from seeking testing, said Bill Keeton, Chief Advocacy Officer at Vivent Health.

“They’re worried that if they go to the doctor, is their doctor going to judge them because they’re gay or because they’re somebody who may have used drugs previously?” Keeton said.

Keeton’s work with Vivent Health is to create awareness about challenges the La Crosse and wider area faces with ending HIV as an epidemic.

Vivent Health was previously the AIDS Resource Center of Wisconsin. In 1999, the AIDS Resource Center partnered with the La Crosse AIDS Service Organization to coordinate HIV and AIDS prevention throughout the state.

“La Crosse County has been from time to time been a little bit of an outlier in terms of the rates of HIV infections,” Keeton said about a greater number of cases in the county relative to other areas of Wisconsin. “The other thing we know in La Crosse and greater Wisconsin is that the HIV epidemic has not just been about folks from the LGBT community. It’s been issues with injection drug use.”

Keeton said health care access is the biggest barrier to treating the virus. Without proper care, people will slip into poverty and turn to drug use or stop practicing safe sex at higher rates, he said. Then, without proper treatment healthcare, infections rise and cycles of harm are created.

Together with proper awareness, Keeton said the most successful modern HIV prevention method is syringe collections.

“Here in La Crosse, we’ve had pretty robust syringe service programming going back to the 90s. What that has afforded us to do is reduce the opportunity for HIV transmission in the community of people who use drugs,” Keeton said.

According to the Centers for Disease Control and Prevention, syringe service programs are attributed to an estimated 50% reduction in HIV infection rates in communities they are active in. When coupled with opioid dependence treatment, transmission of HIV can be reduced by more than 66%.

“We used to estimate that about 13% of society that has HIV doesn’t know that they’re infected. That’s gone down to about 8%. But it’s still not low enough,” said Dr. Stacey Rizza at Mayo Clinic. “We would like to know that everybody who has HIV knows their diagnosis, gets connected to care, and starts treatment so that they can protect themselves and decrease their risk of presenting to others and infecting others.”

Prevention will never be the end of the road. Ensuring that HIV and AIDS patients can live full lives after infection is possible and more advanced than ever before.

As of 2019, there are an estimated 120 people living in La Crosse County with an HIV diagnosis, according to the Wisconsin Department of Health Services. The name of the game in HIV and AIDS treatment is viral load suppression. The newer PrEP medication prevents infection for people who see themselves as vulnerable to the virus. PeP has come forth as a more effective replacement for AZT to slow down the progress of the virus for those who have it.

“What we have seen in greater Wisconsin is that diagnoses are down. This is largely due to PrEP for those taking it before infection, and PeP to suppress the viral load of those with HIV or AIDS,” said Megan Meller, Infection Control Practitioner at Gundersen Health System.

Even with increased access to testing, new infections are falling with a vigorous health plan attached to every HIV diagnosis.

“Patients can take those HIV treatments and it can bring their viral load down,” Meller said. “If their viral load is undetectable, it means they cannot transmit it.”

This effectively means HIV infections can be prevented with proper access to testing and medicine in La Crosse and across the nation.

Health systems in La Crosse all report new HIV cases to the State Health Department for coordination. La Crosse is home to many state of the art infection disease systems that track and assist patients with HIV diagnoses. At Gundersen, an in-house social worker helps connect newly diagnosed HIV positive patients to community resources.

As World AIDS Day comes and goes, La Crosse can continue to celebrate a rich community that truly aims to see an end to the HIV and AIDS virus. Through history, awareness and treatment, those with HIV and friends of patients can rest assured knowing that infection is no longer the end, thanks to hard work from neighbors and professionals.