Testing positive for HIV in 2019 was a wakeup call to lead a healthier lifestyle, Bryan says. He had been struggling with substance use disorder since he was a teenager.
Now 37, Bryan, a Philadelphia resident and New Jersey native who asked that his last name be omitted to protect his privacy, had been in and out of rehab several times, and at 21, he spent time in prison for violating probation and hitting people with his car while he was high. He’d been sober many times, he says, but staying that way for long stretches was difficult.
“Since I was young, I’ve always suffered with self-esteem issues, so that’s why I got high, because I never really liked myself, which I’m getting better with,” Bryan said. “It was just numb. It was like a warm, fuzzy feeling. It’s hard to explain. Once the physical dependency kicked in, it was just like, you had to do it, it was more like a job than fun.”
At 29, Bryan became homeless after his parents kicked him out of their house, and he soon began living and using drugs on the streets of Kensington. He said he was on the path to his HIV diagnosis a few years later.
HIV has been on the rise among people who inject drugs in Philadelphia as the opioid epidemic rages on and the use of the potent synthetic opioid fentanyl increases, according to the city’s Health Department. Bryan was among 83 Philadelphians to be newly diagnosed with HIV through injection drug use in 2019 — compared to just 33 in 2016.
The Health Department plans to publish 2020 data later this month, which officials expect to reflect a declining rate of HIV testing during the pandemic. Less testing means more people could unknowingly spread the human immunodeficiency virus to others, potentially leading to an uptick in reported HIV cases later, health officials say.
Correlating to rising HIV cases is the decline of clean needle use — to 31% in 2018 from 44% in 2012, according to surveys conducted by the Health Department. It’s something Bryan said he can relate to. Though he used clean needles whenever he could, when he didn’t have access, he used the ones he found on the ground — even if they had someone else’s blood on them.
When a person is dependent on heroin, the body has a bad reaction if withdrawn from the drug for several hours, and the only remedy is to use again. That’s one of the reasons why getting sober is so difficult. When Bryan was dope sick, he said, he had no energy, his skin crawled, he had hot flashes and chills, and he vomited or dry-heaved.
“You want to feel better now, and you don’t really care how you feel better — just as long as you feel better. And you really don’t care what you do or have to do to get it,” he said.
When Bryan came down with flu-like symptoms, such as achy joints, diarrhea, sore throat, and fatigue, he attributed it to his lifestyle — living on the street, eating food left on the ground or in trash cans, drinking out of discarded water bottles. But when a friend confided in him that he recently tested positive for HIV, Bryan decided to get tested. When the results were positive, he was in shock.
“My heart was in my throat. It’s hard to describe, but I was definitely scared,” Bryan said. “It was kind of like fear, or panic, or anxiety came over me, and I remember just crying.”
He said he eased out of his depression once he realized his medications were working. The virus is undetectable now, which means his medication has reduced it to such small quantities that it’s no longer detected by standard blood tests.
Bryan is now living on his own on a housing voucher, has a better relationship with his family, and spends his time doing volunteer work and creating art.
City data: Clean needle use falls; HIV rates rise
Prior to 2016, Philadelphia had made great strides. Between 1992 and 2016, new HIV diagnoses among people who inject drugs declined by 95%. The Health Department attributed that success to the implementation of a syringe service program — Prevention Point.
But as the overdose crisis plagued the city and the prevalence of fentanyl increased, so did new HIV cases, health officials say. Fentanyl is a synthetic opioid that’s 80 to 100 times stronger than morphine. Drug dealers often use it to improve potency, but their clients often don’t know their heroin is laced with it. In 2019, 33% of all drugs seized in Philadelphia contained fentanyl, and 878, or 76%, of all overdose deaths in the city involved fentanyl or a fentanyl analog.
Fentanyl has a shorter duration than other opioids, which means people need to inject more frequently to prevent withdrawal symptoms. Therefore, the risk that syringes will be reused and shared is increased, health officials say.
In fact, Prevention Point Philadelphia saw about a 60% increase in demand for its syringe access services in a three-month period in 2020, compared to the same three-month period the year before, said its executive director, Jose Benitez.
“So you’re seeing an uptick in the number of new people that are coming in to register in our syringe services program. But then you also see people come back a lot more because they need a lot more equipment because they’re injecting that much more in a day,” he said.
To tackle the opioid crisis, states cracked down on overprescribing by doctors by documenting prescriptions in databases. That means opioids have become less accessible in doctors’ offices, and people with substance use disorder must go to the streets, Benitez said.
“And then it becomes injectable, because it’s a lot less expensive,” he said.
Dr. Ellen Tedaldi, professor of medicine at Temple University’s Lewis Katz School of Medicine and director of the HIV program at Temple University Hospital, said she’s also seen more untreated HIV among pregnant patients who are actively using drugs, as well as untreated hepatitis C.
“We are having many challenges with overall treatment and follow-up on engagement for women,” she said.
The city Health Department says there’s also been a rise in other infections related to injection drug use, including skin and soft tissue infections, bacteremia, and infective endocarditis.
It’s yet to be seen to what extent the pandemic will play into another sharp rise in HIV rates. Fewer people had access to testing during the beginning of the pandemic. In 2020, there was a 90% decline in community-based testing, according to the city Health Department.
“My biggest concern is its potential spread,” said Alvin Kingcade, practice manager at Bebashi- Transition to Hope, which provides access to HIV treatment, prevention and education.
“We’re trying to reduce the cases in the city of Philadelphia. We’ve increased the amount of PrEP clients that we have. [PrEP is a medication that prevents people from getting HIV.] And treating those who do have it,” he said. “But getting out there to identify those people with testing, that’s another important part, too. So not being able to get out was a barrier. People have to actually go to these centers to get tested.”
Rising HIV cases also come as the group that hopes to open the first supervised injection site in the United States continues to face legal obstacles. In January, the 3rd U.S. Circuit Court of Appeals ruled the injection site proposed by the nonprofit Safehouse would violate federal law. In mid-October, the Supreme Court declined a petition by Safehouse for a review of that decision.
The debate over Safehouse only makes matters worse, said Dr. David O’Gurek, associate professor of family and community medicine at Temple’s Katz School of Medicine.
“Creating new opportunities for evidence-based programs that will provide an open area, harm reduction support to individuals, [only to have] constant battles and fight over it without trying to make any real headway on how we can just work together to do this or make this work. That’s a further sign of systemic problems and bias and stigma that feed down to people who are hurting and have experienced trauma — and perhaps as a result of that trauma, are going to develop substance use disorder,” said O’Gurek, who works with Temple’s TRUST Clinic, which offers addiction treatment.
The Circuit Court ruling is a significant disappointment for advocates and people with substance use disorder, who say a safe injection site would help tremendously.
“If you’re going to do it, at least there’s somewhere safe and where it’s not going to have dirty syringes from the street,” Bryan said. “I’m sure the safe injection sites would offer resources towards treatment centers, and that might be a good thing. People would be around, and prevent overdoses because they’re not using alone.”
HIV, increased drug use, and prevention strategies
Dr. Jay Kostman is a master clinician for the John Bell Health Center and Philadelphia FIGHT Community Health Centers, which provides education and advocacy for people living with HIV and partners with organizations to connect people to treatment for hepatitis C and HIV.
He said most of his established patients who are in active drug addiction are reasonably consistent about using clean needles.
“I think it’s the newer users who are more likely to share or to not use a clean needle. And unfortunately, that’s one of the things that’s playing into the increase in HIV in that population,” he said. “The people that I’ve seen who are newly infected with HIV with drug use as the risk factor, their drug use starting was relatively recent, and that’s the time when they are more likely to not use a clean needle, when they start.”
Temple’s O’Gurek said he would not be surprised if that were the case, but he cautioned against making assumptions.
“If someone develops dependence on the substance and needs to continue to use it to avoid getting sick, and if they’re using intravenously, they’re going to use intravenously however they can,” he said. “It’s on us to make sure that we’re doing everything we can to make sure that those individuals have access to sterile syringes, as well as other supports that they may be interested in and need. I would rather think of it collectively, like it’s our problem.”
O’Gurek said syringe services should be available more widely to curtail rising HIV rates. Pennsylvania state law doesn’t allow for syringe service programs. Prevention Point is able to operate in Philadelphia because former Mayor Ed Rendell signed an executive order allowing such services in the city. Though there are “underground” syringe services in places such as Lancaster and York that police are aware of, on-the-books support is needed, O’Gurek said.
Syringe service programs offer so much more than preventing virus transmission, he said, because people who engage with these programs are more likely to enter treatment.
But it’s also important that health officials reevaluate HIV in Philadelphia and understand why the increase in cases is occurring, O’Gurek said.
“Recognizing that perhaps what we have in place is either not working, or not functioning, or insufficient, particularly for the community we’re working to help,” he said. “I think, by and large, even pre-pandemic, we would probably say there were insufficient services for the number of individuals who experience substance use disorder within the community.”
He called for appropriate funding for “outside the box” ideas, and legislation to expand syringe services and intervention programs. That funding must go to organizations that have a deep understanding of the communities they serve, O’Gurek said.
“We need to understand better from the people who inject drugs who are developing HIV, ‘What was going on? How could we have intervened? Where could there have been a prevention step? And are we missing those opportunities?’” he said.
Part of that involves organizations putting themselves in their clients’ shoes to better understand which resources have the most benefit, O’Gurek said.
“During pandemic time, and trauma, and people shifting to different locations, particularly people who are experiencing homelessness may not consistently be in the same location or might not be familiar with their surroundings and have access to sterile syringes. And then, should bad weather come and suddenly they end up in a shelter location in another area of the city, potentially blocking access to services that they’re familiar with,” he said.
“And it’s not to say putting people in shelters is the wrong thing to do. It’s just, I think we need to more broadly consider ramifications of some of the work that we’re doing. A lot of things have good intentions, but making sure we’re not disrupting people’s lives in other ways as well.”
Expanding access to PrEP also is needed, health experts say. Typically, PrEP campaigns have focused on sexually transmitted HIV rather than injection drug use, and many primary care physicians don’t offer it. Prevention Point began a PrEP medication program in February 2020, and the organization’s Benitez said he, too, would like to see increased education around the medication.
“We estimate about a quarter of folks that come in for syringe services may be HIV positive — they either know or don’t know. So we have about 75% of the people who aren’t positive but have high risk for it. So PrEP becomes a viable option to keep those folks safe, especially if we don’t have enough equipment out there for people to not share,” he said.
The pandemic’s effect on drug use and HIV
Though some HIV testing has been available, larger clinics did not happen throughout much of the pandemic. For example, Philadelphia FIGHT provided testing by appointment only, rather than organizing and publicizing large testing events.
Tedaldi, of Temple University Hospital, said HIV screenings in the emergency room also declined when people were too afraid to go to the hospital. A person not knowing their status is not the only concern.
“Even if you’re known to be positive, in terms of being able to access your medical provider, ensuring that you’re getting medications refilled, a lot of those are additional challenges,” Tedaldi said.
But barriers to health care aren’t something new for people with substance use disorder. Many have been reluctant to seek it because they’ve had bad experiences or felt judged in the past, Kostman said. He said more primary care providers should treat substance use disorder and offer medication assisted treatment. Primary care providers can now prescribe Suboxone, but they can’t prescribe methadone because it is more tightly regulated.
“Making that part of primary care will help with the stigma because they won’t have to go to a separate program just to get treatment for their drug use,” Kostman said.
Some people may not have stable addresses, phones, or transportation, which also creates barriers to follow-up care, Tedaldi said.
“A lot of people converted over to telemedicine visits, but if the person doesn’t have a phone or internet, you can’t get them to be seen,” she said.
Kingcade, of Bebashi, said it’s important that during the pandemic health officials ensure addiction and HIV services are not forgotten.
“COVID has been a very major thing that all of us in the medical field have been really focusing on. I think that the focus on COVID treatment, and identifying people with COVID, and getting people vaccinated, has also affected those that are IV drug users, too, because the focus really isn’t upon them as it was before,” he said. “We had a big campaign for heroin use and trying to decrease the effects of IV drug use in our community. And now, with COVID, that shifted some of the concentration that we did on that population.”