HIV Story Archives - West Virginia Public Broadcasting

Fauci Weighs In On W.Va.’s HIV Rate

HIV Aids is on the rise in Monongalia County as a group of WVU Medical students learned recently on a Zoom call with Dr. Anthony Fauci.

Since January 2018, the West Virginia Bureau for Public Health has been monitoring increased diagnoses of HIV across the state, especially among people who inject drugs.

According to the CDC, 210 new HIV infections occurred in West Virginia in 2022, the most recent federal data. In 2021, 149 people were newly diagnosed with HIV.

According to AIDSVu, an interactive online mapping tool that visualizes the impact of the HIV epidemic on communities across the country, in 2021, there were 2,196 people living with HIV in West Virginia.

According to the Bureau for Public Health, preliminary reporting shows 83 cases of HIV diagnosed in West Virginia so far in 2023.

In a Zoom call with West Virginia University (WVU) medical students, Dr. Anthony Fauci, former director of the National Institute of Allergy and Infectious Disease, voiced his concern about the number of HIV diagnoses in Morgantown and West Virginia as a whole.

In 2019, Cabell County was the epicenter of a large HIV cluster, however, since then, HIV cases have been increasing in other areas of the state. Currently, this increase is still most significant in Cabell County with a total of 21 positive cases so far in 2023, with Kanawha County at 18 infections so far this year.

Fauci and Dr. Stef Shuster, associate professor of sociology at Michigan State University, visited West Virginia University virtually in a conversation on the history of LGBTQ+ health care in the United States. The conversation was facilitated by Ellen Rodrigues, director of WVU’s LGBTQ+ Center.

While Fauci is known nationally for his work during the COVID-19 pandemic, he has spent 40 years on the forefront of HIV and AIDS research and treatment.

“Many of us across the country think of HIV and AIDS as a disease that is manageable and perhaps in our rearview mirror, right? But we have unfortunately, reliable data showing that right here, in Morgantown, West Virginia, the home of our university, we’ve had, we have now a substantial uptick in cases of HIV AIDS,” Rodrigues said.

Fauci responded that an uptick in HIV cases “surprises and dismays” him.

“The fact that you have an increase probably reflects two things,” Fauci said. “It’s the lack of PrEP (pre-exposure prophylaxis) accessibility, for those who are susceptible and a lack of accessibility to treatment for those who are already infected.”

Dr. Judith Feinberg is a professor of behavioral medicine and psychiatry and professor of medicine in infectious diseases, and the vice chair of medicine for research at WVU. She confirmed the recent outbreak or cluster of HIV and AIDS in Morgantown, defining a cluster as 10 infections or more.

“The one in Mon County, there are a couple of recent outbreaks, but the one in Mon county involves 10 men who have sex with men and they’ve been identified and offered care,” Feinberg said. “And I believe the majority are being cared for actually at what is called the positive health clinic here.”

Feinberg said that with modern preventative medication accessible and information available, cases of HIV and AIDs should be falling, not rising.

“Relative to the fact that before 2017, only an average of maybe 75 to 77 new cases were diagnosed a year, 10 new cases is a lot and in recent years since 2017, because we’ve had a number of HIV outbreaks across the state, that number has doubled,” Feinberg said. “I believe for 2021, which is the last year we have full reporting on it’s something like 139. And it’s been running about double ever since 2017 and that’s really because that’s the point at which HIV entered the community of people who inject drugs.”

Feinberg said there are two major behavioral risks associated with HIV.Fauci agreed with Feinberg’s conclusion about the reason for an uptick in cases in West Virginia.

“Injecting drugs has really recently overtaken men who have sex with men as the primary behavior behavioral risk for HIV,” Fauci said. “And how can we do better with this? Well, first of all, we need a public, we need the public to understand that this is happening.”

According to the West Virginia 2020-2022 Substance Use Response Plan, from 2014 to 2017, the drug overdose death rate in West Virginia increased from a rate of 35.5 per 100,000 to 57.8 per 100,000, far exceeding any other state in the nation.

“Drug addiction, as we all know, is a disease and not a crime,” Fauci said. “And when you’re trying to prevent someone from getting infected from injection drug use, that’s a very difficult problem unless you get sterile needles a little as a needle exchange, but for sexual transmission, we should be looking in the community about why is there lack of the access to what we know is a highly effective prevention. That’s my only comment about that. Very disturbing.”

That prevention is available as a pill to be taken frequently, or a shot, taken on a less frequent basis.

“That is entirely preventable,” Fauci said. “We now have pre-exposure prophylaxis that’s either in an oral form with a drug that you could take every day or in association with your sexual contact, or now most recently, highly, highly effective, injectable long acting every couple of months, pre-exposure prophylaxis that the efficacy of that in preventing perfection, if utilized properly, is 90 plus percent 98 percent, sometimes close to 100 percent.”

With preventative medication available, experts think it is a lack of public perception of HIV and AIDs as a threat that leads to an uptick in infections.

“Changing public perception has been really hard. And I think, as I said, I think what happened is that this entered the public knowledge and the public imagination decades ago, in this more limited context of you know, men who have sex with men,” Feinberg said. “So I think, you know, education and having an awareness is really key, right?”

Appalachia Health News is a project of West Virginia Public Broadcasting with support from Charleston Area Medical Center and Marshall Health.

HIV/AIDS On The Rise In Monongalia County And A Look At Soul Food Traditions In Appalachia, This West Virginia Morning

On this West Virginia Morning, HIV/AIDS is on the rise in Monongalia County as a group of WVU medical students learned recently on a Zoom call with Dr. Anthony Fauci. Emily Rice has more.

On this West Virginia Morning, HIV/AIDS is on the rise in Monongalia County as a group of WVU medical students learned recently on a Zoom call with Dr. Anthony Fauci. Emily Rice has more.

Also, in this show, soul food is associated with Black communities in the south, but it’s also traditional to Appalachia. Folkways Fellow Vanessa Peña talked with Xavier Oglesby, a master artist in soul food cooking from Beckley.

West Virginia Morning is a production of West Virginia Public Broadcasting which is solely responsible for its content.

Support for our news bureaus comes from Shepherd University.

Caroline MacGregor produced this episode.

Listen to West Virginia Morning weekdays at 7:43 a.m. on WVPB Radio or subscribe to the podcast and never miss an episode. #WVMorning

White House Renews Push For HIV Treatment, Prevention

According to the Centers for Disease Control and Prevention, slightly more than half of West Virginians with HIV are receiving treatment. The national goal is 80 percent.

West Virginia has seen a surge in new HIV cases in the past couple of years. The White House is mounting a campaign to increase awareness of treatment options.

Medication can suppress HIV so that people living with the virus have virtually no risk of transmitting it. Yet according to the Centers for Disease Control and Prevention, slightly more than half of West Virginians with HIV are receiving treatment. The national goal is 80 percent.

Tim Harrison, a senior policy adviser on HIV and AIDS policy at the U.S. Department of Health and Human Services, says the state is part of a renewed focus by the Biden administration on HIV prevention and treatment.

“What the numbers really tell us is there are not enough people who are virally suppressed,” he said. “Viral suppression is the gold standard if we want individuals with HIV to live healthy lives as well as not being able to transmit the virus to their sexual partners.”

West Virginians who are at the highest risk for HIV might not know there is an effective medication that can prevent them from getting the virus. It’s called PrEP, and only a fraction of the people who fall in that category are taking it.

Needle exchange programs are another effective tool for preventing HIV transmission. But state and local governments have enacted policies to discourage needle exchanges.

Stigma, lack of health insurance and homelessness are factors that can also discourage HIV prevention and treatment.

The opioid epidemic has been a driver of increased HIV infections in a number of states, including West Virginia. Harrison says the problem needs more attention than it’s received.

“I think that West Virginia has gone under the radar, perhaps far too long,” he said. “And I think it’s really important that we’re recognizing the need that exists there.”

Harrison’s goal is to get more people into care and stay in care.

HIV In The Mountain State: Robert Becomes A Caretaker After His Partner's Death

Robert Singleton moved to Hardy County, West Virginia in search of peace and clean air. An internationally recognized painter, Robert decided to build a home and studio on a piece of property that overlooked the Blue Ridge Mountains.

In 1987, Robert and his partner, Steven Russell, decided it was time to move in together.

“We had talked about AIDS, or HIV. And he said that he had been tested and was negative. And, I said I had also and as long as we were faithful to each other, we had nothing to be concerned about, because we were both negative.”

One day, before Steven was supposed to go to work, Robert found him sitting in a chair on their back porch.

“I was sitting here and he was beet red. I said, ‘Steven, you don’t look well.’ I put my hand on his forehead and he was burning up and he said, ‘Robert, I haven’t been honest with you. I’ve been really sick.’”

When Robert took his temperature, Steven had a fever of 105. He told Robert he had been steadily losing weight.

“We didn’t use the word AIDS. It was a know — a very fearful knowing. And I said well, ‘Will you trust me? I need to do some things.’ And he said, “Yes, please do what you have to do.’”

Robert called the national AIDS hotline. Within a couple of hours, a nurse at a local hospital called back. She said both Robert and Steven needed to come in as soon as possible.

“The doctor came in to examine him. They drew some blood and did some testing. And then, I don’t know, 30 minutes later they came back and he said, “Steven, I hate to tell you this. But you have full-blown AIDS.’”

“I was sitting right next to him and he was on a gurney. And he just rolled over and looked at me and he said, “Robert, I’m really sorry if I’ve done something to you.” I said, “Don’t worry about it, Steven. We’ll take it a day at a time. We need to focus on you.”

Robert’s test results came back negative. But, he and Stephen both knew what Stephen’s positive diagnosis meant.

“He lived for two years to that day. From the day he was diagnosed to the day he died was exactly two years.”

Robert, now 83, still lives and paints in the same house as he did when Steven was alive. While sitting on the same back porch where his life changed forever, Robert points over to a hill on his property.

“Steve and I used to hang out there, it was a nice place in the summer. We’d take a cold beer and sit under the trees. Anyway, just before he died, he said would I please put his ashes up there on the hill under the trees?”

While Robert never contracted the disease himself, it radically changed the trajectory of his life. Seven of his lifelong friends would die of complications related to AIDS.

“There was a Thanksgiving in, maybe, 1984? We gathered here for a big Thanksgiving dinner. Every one of them, every single one of those people, and their partners died of AIDS. All except me. They all got AIDS and died.”

In Robert’s memoir, titled “Until I Become Light”, he includes a poem about that night. The final verse reads, “Of AIDS, they all suffered. Died. Martyrs of love incarnate. Martyred all, save one.”

As Robert watched his friends go one by one, he decided to lean into the role of caretaker. Anyone dying of AIDS would have his unwavering support. His friends weren’t just dying a painful death. They were dying of a disease that kept everyone else far away from them.

“They were terrified of this plague. The ‘Gay Plague’ is what they referred to it as. And I, for some unknown reason, I was not terrified. I felt these were people I really cared about a great deal. And, for whatever reason, I was not fearful.”

Not long after Steven’s passing, his close friend Butch reached out.

“I knew by this time that he was ill. He called me and said “Robert, there’s only one place I want to be and one person I want to be with.”

Butch asked to have his ashes placed on the same hill where Robert had put Steven’s. Each of the people Robert would accompany to the end of their life would make the same request.

Robert talks about the people he’s lost with nostalgia. But there’s also a sense of peace. He knows at their most desperate hour, he was able to provide the people closest to him with companionship and a promise.

“They’re all up there. They all wanted to go there. They made me promise them once they had passed that I would put them up on the hill.”

Robert rarely visits the top of the hill anymore. His lung condition makes long walks in the summer heat strenuous. Instead he says he’s content to watch the hickory leaves in the spring–a reminder each year that his friends are, in a way, still living. And at the core of his joy is the knowledge that some day he will join them — when he becomes light.

Volunteers Install Charleston’s Second Sharps Container For Used Syringes

A new structure was unveiled at a ribbon-cutting ceremony Friday in Charleston. It wasn’t a school, business or hospital. Instead, local activists celebrated a humble disposal box, intended to collect used syringes.

A grassroots HIV and recovery group installed Charleston’s second sturdy sharp container amid ongoing concerns over the city’s growing HIV outbreak.

“Let this be the first action to get us united on a path to meeting this growing need for expanding harm-reduction in our community,” said Stacy Kay with Solutions Oriented Addiction Response, or SOAR.

Kay said SOAR will be responsible for clearing out the box on a regular basis.

This event comes just days after the Centers for Disease Control and Prevention released a report that says the capital city needs more clean needles to curb the spread of HIV, which has gotten worse in recent years.

The CDC’s recommendation didn’t come as a surprise to SOAR and those that study infectious diseases. But state and local laws passed this year do limit who can give out clean needles.

SOAR shut down its health fairs days before the city ordinance passed. The group continues to criticize the city’s move.

“We simply cannot punish those who are hurting the most, criminalize the helpers, and hope that this will all just go away,” Kay said.

The CDC’s findings also say the city could use more public sharp containers for IV drug users to properly dispose of used needles.

“It helps to do something,” Kay said.

State epidemiologist Shannon McBee told WVPB she thinks the city and state can get behind these recommendations.

“I think there’s options for us to minimize improper or unsafe disposal of used syringes within the current context of our laws,” McBee said.

The only other sturdy sharps container in Charleston is outside the local health department. McBee, activists and the CDC pointed out that there is a constant law enforcement presence near that container, which could deter folks from disposing of their syringes there.

The new box is located on Charleston’s East Side near a park commemorating those who have died of AIDS.

“The struggle to overcome AIDS started in an ocean of stigma,” said Carl Maxwell, the president of the Living AIDS Memorial Garden. “Too many people thought that the people who first acquired AIDS were unworthy or somehow deserved it. That wasn’t true then, and it’s certainly not true now. We’re excited to be a part of the solution.”

CDC Finds Testing Gaps, Lack Of Clean Needles To Tackle Kanawha HIV Outbreak

The Centers for Disease Control and Prevention spent one month in Kanawha County this summer to investigate the local HIV outbreak. The federal agency released its findings this week.

The CDC called the outbreak the “most concerning” in the nation earlier this year. With an initial push from Charleston Mayor Amy Goodwin, the state requested a team of disease intervention specialists from the CDC to study the outbreak on-site. This Epi-Aid provides short-term, but highly involved, assessment and assistance. Cabell County went through the same process in 2019 for its HIV outbreak.

Over four weeks, the CDC analyzed medical records and spoke with local health and social service providers at the frontlines of the outbreak. It also interviewed 26 people who have HIV or are at risk of contracting the virus. This includes people who use IV drugs and are often homeless, which represent most new HIV diagnoses.

“It’s clear from this report, we do not have the services in place to prevent these infections, diagnose them, and treat them,” said Robin Pollini, an infectious disease expert at WVU specializing in IV drug use.

The report outlines missed opportunities for testing and barriers to HIV treatment and clean needles.

“We were not surprised by the problems noted in the report. We knew they existed,” said Mayor Goodwin.

Local officials and medical and social service providers at the frontlines of the outbreak continue to meet monthly to form solutions. They meet next Tuesday at noon at Charleston’s health department.

“The state needs to take a leadership role,” Goodwin said. “We need their expertise and resources if we are going to get a handle on this serious issue affecting our entire state.”

Nearby counties are not seeing case numbers like Kanawha County, but health workers say some transient patients could spread the virus elsewhere.

State Epidemiologist Shannon McBee says her team is ready to assist the county in implementing some of the CDC’s recommendations. The CDC says it is also on standby for additional assistance as it’s requested.

“We can’t speculate on how many HIV cases will ultimately be a part of the outbreak among people who inject drugs in Kanawha County, but given the evidence of ongoing rapid HIV transmission, response activities should be approached with urgency,” the CDC said.

Outbreak spread

Before the Epi-Aid began, state and federal health agencies knew HIV cases had spiked in recent years among IV drug users.

Since the beginning of 2019, 75 people who inject drugs have been diagnosed with HIV in Kanawha County. The CDC sounded the alarm because it marks an uptick from previous years.

“We know that the opioid misuse epidemic has substantially increased the transmission… especially during the pandemic, when people have been faced with new challenges such as isolation, and depression,” said McBee.

The CDC found through its investigation that the virus is spreading rapidly among a small but connected group of people in Charleston, at a rate 12 times the national average. The outbreak is separate from Cabell County’s outbreak, which the CDC also studied in 2019.

The median age of those diagnosed is 34 and most don’t have secure housing.

Opportunities for more testing

The CDC analyzed medical records for 65 people diagnosed with HIV who at some point had visited Charleston Area Medical Center or Health Right. CAMC is home to the Ryan White Foundation, which is the largest comprehensive HIV medical provider. Health Right is a free clinic and the only operator of a syringe service program in Charleston.

While most diagnoses were recorded in medical settings, the CDC says there’s more opportunities to test people who come into emergency departments. Many of those using IV drugs visited emergency departments for wound infections. Only five percent received their diagnoses in an emergency department.

“I personally would like to see opt-out testing in emergency departments across the state,” McBee said. “This will allow us to identify those cases sooner and get those individuals into care to prevent further transmission into the community.”

Christine Teague with the Ryan White Program out of CAMC works directly with HIV patients within a much larger hospital setting. She said testing people who visit an emergency room at a hospital would be proactive, but she expects growing pains.

“[Emergency staff] are tasked with treating emergent health care concerns, testing for HIV and prevention, and all these things. They don’t believe it’s on top of their priority list,” Teague said.

The CDC also recommends more testing in correctional facilities and in targeted locations in Charleston’s West Side. The local health department does mobile testing in targeted areas twice a week, but often only a handful of people are tested.

With gaps in testing, social service providers told the CDC they believe there could be many more people with the disease.

Treatment and barriers

The report shows many people who have HIV are not receiving routine treatment for the virus. Most had received initial treatment, but only 19 percent had received treatment in the past 90 days.

Teague has treated HIV patients for more than 20 years. She says many of her homeless clients with substance abuse disorder are intimidated in large hospitals.

“They’re ashamed,” Teague said. “And it’s an everyday struggle to come into a clinic or hospital where there’s all kinds of people there that might be nicer dressed and are clean.”

Interviewees also reported negative interactions with medical providers due to their drug habits.

“That’s probably another reason why I wouldn’t go to the hospital unless I was dying, because they don’t care about you,” one interview participant said.

When clients do opt into treatment, they often face compounding barriers to care.

Without reliable transportation, keeping appointments can be difficult. Asking patients to sit through lengthy visits can be scary for someone who fears going through withdrawal.

Interviewees also reported that any medications they receive could easily be stolen because they have no stable shelter or storage. The CDC found that of those that currently receive routine HIV care, all have stable housing.

The CDC recommends medical providers rethink how to administer care to make it more convenient.

Teague imagines this as a one-stop-shop to provide a host of services in one visit. It could be centrally located or even a mobile clinic. Patients could access clean needles, overdose reversal medication, and medicated assisted treatment. They could also sign up for Medicaid, IDs and housing services.

“If I could just go into a small mobile unit where there’s just a handful of people that I’m already kind of familiar with, and have always been friendly to me, then I think that would be a much more comfortable environment for them,” Teague said.

Clean Needles and Prevention

To prevent further transmission, the CDC recommends more ways to get clean needles out to IV drug users.

Two syringe service programs have closed in the capital city in the past three years. The local health department no longer gives out clean needles. The grassroots group SOAR shut down its health fairs due to public pressure earlier this year.

One needle exchange remains at Health Right. But the CDC’s medical records analysis shows that of the 65 people recently diagnosed, only four people ever got syringes, and they didn’t come back to pick up more.

Health Right opened another location in the city’s West Side, a hot-spot for those most likely to contract HIV. The clinic has said at community meetings it would not distribute needles out of that location without support from neighboring residents.

The city recently adopted an ordinance that restricts who can give out clean syringes. HIV and recovery advocates have blasted the city for this law.

“We shouldn’t arrest the helpers, right? In Charleston right now, if a nurse gave her sterile syringe to someone who uses drugs, she could be arrested and charged with a misdemeanor.” said Joe Solomon, who operated Solutions Oriented Addiction Response, or SOAR. “We’re asking the mayor and city council to show real courage to say, ‘Hey, we made a mistake, and we’d like to amend that mistake.’”

Goodwin said the city has no interest in overturning or working outside state and city law.

The local ordinance makes some health workers question how serious the city is about confronting the current outbreak.

“You should care about what it says about Charleston and trying to bring people to Charleston, West Virginia,” Pollini said. “People want to live in communities where people care about each other, and that promote good health, and adhere to science.”