Living with HIV: Fueled by heroin, HIV makes an alarming resurgence in Cincinnati

Terry DeMio | Cincinnati Enquirer

Show Caption Hide Caption HIV does not have to be a death sentence. One man's journey. Ron Ward talks about his struggle with HIV and his mission now to help others.

Steven Linville remembers vividly when a doctor told him he was HIV-positive.

"It was like a shovel came at me at a thousand miles per hour," he says. "I just instantly thought I was a monster."

On June 1, Linville, 26, fresh out of jail after getting caught with syringes, says he was finally ready to act on the diagnosis he'd heard a few months earlier after he'd overdosed. He got HIV from a contaminated needle, he says.

If it was a surprise to Linville, it was not to national and local infectious diseases experts who saw this new public health crisis from a distance several years ago.

That's because new HIV cases now flooding the area were foreseen as a consequence of the heroin epidemic.

The Centers for Disease Control and Prevention even got specific two years ago, saying that parts of Ohio and Kentucky, 65 counties among 220 identified nationwide, should be prepared for this potential epidemic within an epidemic.

It had already happened in 2015 in Scott County, Indiana, in a tiny town called Austin. An HIV outbreak there, attributed to unclean needles used to shoot the opioid Opana, occurred before a needle exchange was introduced in the town.

Cincinnati area health leaders and coalitions fighting the heroin epidemic had spent the last few years going to dozens of public meetings trying to convince elected officials to allow needle exchanges in their communities.

They warned the public of the dangers of having HIV emerge among drug users – and the threat to the general public.

They defended their pro-exchange position with evidence from communities including Baltimore, which went from an HIV rate among injection drug users of 62 percent in 1994 to 12 percent in 2011 after establishing a syringe-exchange program in 1994.

But the response was slow, with many local officials reacting to constituents' fears of having exchanges in their neighborhoods, and of needle giveaways enabling drug use, never mind what the experts says.

Dr. Judith Feinberg, an infectious diseases expert, started the Cincinnati Exchange Project in 2014, but it had funding struggles. Northern Kentucky Health Department succeeded in 2016 in establishing a program in a little city in Grant County but failed in its three biggest counties, Boone, Campell and Kenton.

The ramping up of needle exchanges in the region only started this year.

That was after the big HIV hit in 2017: Northern Kentucky Health Department identified four times more HIV cases than it had in 2016 among people with the risk factor of injecting drugs.

More: NKY, Cincinnati see sharp rise in HIV cases linked to injected drug use

More: CDC to help find roots of HIV 'cluster' tied to heroin, IV drugs in Campbell, Kenton counties

The numbers continue to grow.

In 2017, Hamilton County Public Health had three times more HIV cases among people who injected drugs than in 2016.

There were increases as well in HIV among people who did not use drugs, but the jump among people who'd injected drugs led to a public health call for an immediate movement to reverse the trend:

"Swift action is key to stopping the rise in HIV," says Stephanie Vogel, the Northern Kentucky health department's director of population health.

It wasn't just happening here.

Massachusetts' northeast region saw a 62.5 percent jump in newly reported HIV cases from 2016 to 2017 among people who inject drugs. The state's health department noted another 18 there this year, suggesting "the outbreak is ongoing and keeping pace with 2017."

While Massachusetts has had needle exchanges for years, the northeast part of that state only got its first program in 2017 and a second this year, officials say.

"It was an area with no access to needle exchange," says Carl Sciortino, executive director of the AIDS Action Committee of Massachusetts. He says the closest syringe exchange was in Boston.

For injection drug users, that's a big ask. The addicted brain is compulsively seeking the drug that stops painful withdrawal – not reacting to health and safety threats for themselves or anyone else, experts say.

Here, as in Massachusetts, health officials have called on the CDC for help with this new crisis. They're trying to find out whether the local cases are linked, when people contracted HIV, identify the strains to see if they're the same, and more.

From her new office at West Virginia University, Feinberg fumes.

"It’s been known for years that injecting drugs was a risk for HIV," she says. "This is exactly why I tried to put in syringe services.”

More: 'Eyes are on Newport' for needle exchange movement in light of HIV cluster in NKY

More: Needle exchange hits restart button in Hamilton County, Cincinnati

What's the threat?

If HIV is left untreated, people can develop AIDS, which causes a range of opportunistic infections and death. Once someone is diagnosed, it's imperative they take medication as directed to stay healthy.

It's also urgent, say health officials, for those infected to avoid spreading the virus to others.

HIV can be transmitted through blood, semen, pre-seminal fluid, rectal fluids, vaginal fluids and breast milk. The virus also can be spread through shared injection equipment that has traces of blood left on it.

Treatment isn't as hard to get or go through as it was in the 1980s or '90s, experts say, but for this particular group – injection drug users – it's not necessarily a cinch.

"Continued substance use and mental health issues, which tend to go hand-in-hand, are the main reasons that people with HIV do not get their virus under control," Feinberg explained.

"So they have progressive disease, suffer more, cost the health system more money for hospitalizations that could have been avoided," she says. "And continue to be infectious to others."

HIV medications have improved dramatically. Most people take a pill a day. That helps them stay healthier and prevents others from getting the virus.

Life expectancy for people successfully treated for HIV is almost normal, experts say.

But living with the disease is not normal, say some who have HIV.

Living with HIV

That includes Ron Ward of Middletown.

He went through six years of addiction, begun after he and his wife and kids were left homeless after the Great Miami River flood in 2004 destroyed their five-bedroom Cape Cod.

“I failed my family. I failed my kids," he says.

Ward used drugs to escape his pain. Eventually, he injected meth, and the whole thing culminated in 2010 when someone shot him up with heroin.

Finally, Ward said no more. He went in for detox.

That's when he learned he was HIV-positive. “October 18, 2010," he remembers.

Ward was stunned. He was still enduring withdrawal symptoms.

But as soon as he got out, he hit the internet. And came away terrified.

“I did not just have HIV,” Ward says. “I had AIDS.”

"I had a breakdown. I was a mess. I was sobbing. I was not understanding. I was by myself, up in the middle of the night. You know, I felt so alone."

Ward told his wife, Nicole, what was going on.

"She's my rock. She supported me," Ward says.

So he trudged forward: Secure counseling. Get treatment.

Feinberg, who at the time was working at University of Cincinnati College of Medicine and had opened an HIV clinic, was among his doctors.

She tried to reassure Ward.

He says he trusted her, but still, he remained uneasy.

His first medication came with "traumatic nightmares," he says. "I mean, tormented nightmares. I would have nightmares of people holding me down and stabbing me with needles.”

He worried that this was his new life sentence. Illness, terror, bills.

The CDC estimates the lifetime cost of HIV treatment at $449,000. The medications make it hard for the virus to reproduce itself, so blood levels fall below the ability of the standard test used to detect HIV. "But HIV is still there – albeit in small amounts," Feinberg says.

"No one has to die from HIV," says Jaasiel Chapman, clinical research community educator at the UC College of Medicine. "The medications allow individuals to live a normal lifespan. That is, of course, if they adhere to their regimen."

Things aren't always so tidy.

Ward's second set of medications, a two-pill regimen, stopped working, he says.

While Feinberg told him there were more options, Ward says he didn’t hear that. “I only heard it stopped working.”

Ward plunged to a new low.

"I heard that voice, 'This is your way out. To be completely done. To take your life,' " he says. He reached out for help at hospitals, but they couldn't keep him long.

One evening he left home on foot and, he says, swallowed all of the antidepressants that he’d carried with him.

"I don't remember taking the pills. All I remember is going for the walk."

When he made it home, Nicole saw the empty pill bottle in his hand. With help from a church friend, she rushed her husband to the hospital.

Ward fell into a coma.

He got pneumonia and was placed in a rotating bed to drain his lungs.

When he finally awoke 13 days later, Ward realized he wanted to live – and help others.

"I was going to save the world," he says.

Ward started a nonprofit support group, Restoration United: A United Fight Against Addiction. It buoyed him and others until he relapsed in June. Now he is in a rehabilitation center in Florida.

He insists he is not the same Ron Ward he was before drugs – or HIV.

"I get colds, I get sinus infections frequently. I don’t have the energy I used to have. I’m constantly worried. I’m constantly concerned about my (viral) load.

"I'll have to take a pill every day of my life."

“Being infected with HIV has robbed me of who I used to be,” Ward says.

Battling on other fronts

The feeling of being less, or different, and the shame others place on people with HIV and addiction are issues that the National Harm Reduction Coalition of New York City tries to combat through education and support of those affected. They hope to erase the shame, the bias, the judgment and prejudice surrounding drug use and HIV.

Daniel Raymond, the organization's policy director, says hearing Linville's initial response to being diagnosed with HIV – "I just instantly thought I was a monster" – brought back his memories of helping people in the early days of the AIDS epidemic in New York City.

"I felt like, on a weekly basis, I'd see somebody who'd just found out they were HIV-positive. At that time, HIV was so pervasive in New York City, I think there was this sense of inevitability."

Fast-forward to today: HIV has been successfully managed for years and getting infected is no longer at the forefront of people's minds, Raymond says. Dying from AIDS is far less a threat.

"It feels more like the exception" to acquire the virus, he says. "People don't have the framework now to process the information."

Plus, there are people who still do not understand the virus. Ward says some of his family fell into that group when he told them he was HIV-positive. "My mom had me drink out of a plastic cup. I had one plastic cup with my name on it."

Linville says he is still adjusting to what being HIV-positive will mean for him.

He was diagnosed with the virus in April and spent much of May trying to figure out how he'd tell others of his illness. He even wondered whether he'd ever have a relationship with a woman again.

Now, Linville says he doesn't start a conversation with new potential friends without telling them he has the virus.

He figures that way, people will know up front and he, too, will know how they feel about it by watching for their reaction.

He's come full circle on his view of having HIV, he says.

"Now, I embrace that I have it."

Where are we?

For now, the breadth of HIV in the Cincinnati region remains unknown.

A new group, the population of injection drug users, rather than gay men, has become the focal point of the concern.

Some infectious-diseases experts and treatment supporters are recommending that people who are at high risk of acquiring HIV take a prevention medication known as PrEP. Chapman, for example, has been talking with sex workers, who often inject drugs, about getting the medication.

The CDC continues to help health departments investigate their cases. Public health officials are adding needle-exchange operations. Hamilton County Public Health took over the financially faltering mobile Cincinnati Exchange Project in January, adding sites and sustainable funding. Newport approved a syringe exchange, and that deal prompted Covington to host one there.

Public health workers are hitting communities with times and locations of needle-exchange operations and trying to educate the public about HIV. They're keeping a vigilant eye on HIV diagnoses, to see whether the climb continues.

Northern Kentucky Health Department alone has spent $22,000 to inform the public of testing efforts and more with bus ads, a text-messaging system, brochures and posters in businesses and public locations.

One of public health's most prominent posts also reaches people through social media.

Its message? Get tested for HIV.

What should you do if you're at risk for HIV

Get tested for HIV and do it annually if your risk continues.

Use condoms and take "PrEP," a medication that can prevent people from getting HIV, if you have ongoing risk

Get PrEP from Caracole, PrEP clinics at UC Health, infectious disease specialists, ask your doctor (some family physicians prescribe it)

For help from Caracole, call 513-475-8585

Sources: Dr. Keith Luckett, board member, Caracole, which works to help reduce the impact of HIV and AIDS, and a UC College of Medicine assistant professor of medicine; and Dr. Carl Fichtenbaum, professor of clinical medicine at UC College of Medicine

Where and when to get sterile needles and injection equipment

Hamilton County Public Health's Exchange Project Monday: 2-5 p.m., 1670 Cooper St., Northside; Tuesday: 1-4 p.m., 400 block of Crawford Street, Middletown; Wednesday: 10 a.m.-1 p.m., 65 E. Hollister St., Mount Auburn; 2-5 p.m. 2420 Harrison Ave., Westwood; Thursday: 10 a.m.-1 p.m., 3000 Hospital Drive, Mercy Health-Clermont Batavia; 2:30-5:30 p.m., Hamilton County Public Health, 250 William Howard Taft Road, Corryville

Northern Kentucky Health Department Syringe Access -Exchange Program: Wednesday: 1-4 p.m., 234 Barnes Road, Williamstown, Grant County Health Clinic

NKY Health's mobile Syringe Access/Exchange: 1-4 p.m. Tuesdays beginning July 24, St. Elizabeth Healthcare Urgent Care, Newport/Fort Thomas, 1400 N. Grand Ave., Campbell County; and 1-4 p.m. Thursdays beginning July 26, St. Elizabeth-Covington, 1500 James Simpson Jr. Way, Kenton County.

Get tested

For confidential, anonymous, free HIV testing, check out your county's health department website or Caracole, and search HIV or see your family physician.