Lawrence was 17 when he began injecting heroin. He was 20 when he was diagnosed with hepatitis C.
Like many heroin users, Lawrence shared syringes with his friends in Juniata County. They knew the risk of contracting a disease but, when they had only a single needle and their bodies were aching from withdrawal, those concerns often became an afterthought.
“Even when I contracted hepatitis C and I told people, ‘look I have hep,’ a lot of them didn’t care,” Lawrence, who declined to give his last name, said. “Being sick is one of the worst feelings in the world and you will do anything to get rid of it.”
As heroin use has become more prevalent in Pennsylvania over the past decade, with it has come a new potential for the spread of blood-borne diseases. While HIV rates have declined drastically among heroin addicts since the 1980s, hepatitis has reached epidemic levels. It’s estimated that 60 to 80 percent of heroin users have hepatitis.
Dr. Sameh Boktor, viral hepatitis prevention coordinator for the Pennsylvania Department of Health, said the proportion of young Pennsylvanians with hepatitis C has more than doubled in the past decade. While it’s not entirely clear why the proportion has increased, studies in New York and Massachusetts that have observed a similar trend suggest that it might be spurred by rising use of heroin.
Boktor said although it can be tempting to think of blood-borne disease as a problem solely for heroin addicts, it’s an issue for all Pennsylvanians because users can unwittingly spread the diseases to non-users, particularly through sex.
“When that transmission occurs, it becomes a public health issue,” he said.
Cost counterbalances risk
While hepatitis, a chronic liver disease, and HIV, a disease that attacks the immune system, are now conditions that can be treated or managed, they still upend the lives of those they infect.
Those infected with hepatitis can sustain years, even decades of liver damage before they exhibit symptoms of the disease. Treatment can cost $84,000 and is often difficult to access, particularly for Medicaid recipients.
Meanwhile, HIV has no cure and requires constant medication, costing about a million dollars over an infected person’s life.
Mikal, a former heroin user who now lives in Lancaster, understands that impact first-hand. Like Lawrence, Mikal agreed to speak with PennLive on the condition his surname wasn’t published.
Mikal was diagnosed with HIV in 1985. He said he contracted the disease due to his “lifestyle” and now lives with the consequences.
“Since I changed my life, it doesn’t bother me but I’m still aware that I have this disease and there’s certain things I can’t do,” he said. “Whether it’s having partners or visiting hospitals like I used to.”
Mikal, who has since dedicated his life to trying to help heroin addicts, said heroin has never been cheaper or easier to get on the streets of Lancaster or Harrisburg. He said, consequently, HIV and hepatitis are so common that users are almost blasé about them.
“A lot of people have hepatitis,” he said. “It is so prevalent that they look at it as something like diabetes or something now.”
Funding can be a tough sell
The surge in hepatitis C has, in some ways, caught public health officials by surprise.
José Benitez, director of Prevention Point Philadelphia, a program that allows heroin addicts to exchange their used syringes for clean ones, said that his organization noticed a sharp increase in hepatitis among its clients about five years ago.
“We were all trying to figure out what was going on,” Benitez said.
Benitez said that while HIV rates are down significantly among heroin users, hepatitis has presented particular challenges for outreach workers.
Like HIV, hepatitis is easily spread between heroin users from residual blood in used syringes. However, unlike HIV, the hepatitis virus can survive outside of blood far more readily. He said while heroin users may get clean needles, hepatitis can spread on infected spoons, cookers, tables, cotton buds, and other equipment used by addicts.
“A lot of people have hepatitis. It is so prevalent that they look at it as something like diabetes or something now.”
Benitez said compounding the difficulty in curbing the spread of the disease in Pennsylvania are federal and state bans on funding needle exchanges. With the exception of Prevention Point Philadelphia and Prevention Point Pittsburgh, nearly all needle exchanges operate with “underground” status and precariously little funding.
Benitez said those federal and state policies are driven by ignorance about needle exchanges — some politicians believe that the programs encourage heroin use.
But Benitez said that perception had never been borne out by facts. Prior to the official opening of the Philadelphia’s needle exchange in 1992, he said 47 percent of Philadelphia residents newly diagnosed with HIV acquired it through intravenous drug use. Today, the proportion is only about 5 percent.
The American Medical Association, the Federal Centers for Disease Control and Prevention, and the National Institutes of Health all support needle exchanges as a means to prevent the spread of infectious diseases. New Jersey has its own state-run needle exchange program.
“If you look at it just from a taxpayer perspective,” Benitez said. “It costs about a million dollars per person to take care of someone with HIV in their lifetime. It costs about eight cents to prevent that by giving someone a syringe.”
Sanctioning would greatly help
In July, the Harrisburg Harm Reduction Project opened Harrisburg’s first needle exchange. The group’s outreach workers visit different parts of the city for three days of the week. Like nearly all its sister exchanges across the state, the project is an unofficial program that largely eschews public attention.
“We don’t actively make ourselves well known,” said Melinda Zipp, director of outreach for the organization, “We don’t actively publicize what we are doing. We don’t want any backlash. We don’t any issue for the people who are using our services.”
Zipp said despite the low profile, her program now services about 50 people in Harrisburg per week, many of who return multiple times for syringes.
While Zipp is proud of the group’s work in limiting the spread of infectious diseases, she said it could do more if it were officially sanctioned and funded by the city or state. It would allow her group to work in more areas of the city and for longer hours. It also would make it easier to lease a building or share a community space to operate from — which, she said, would it easier for addicts to find her program and for her outreach workers to store supplies.
“There’s always a challenge to being mobile,” she said.
Holli Senior, a spokeswoman for the Department of Health, said the department barred state money from going towards needle exchanges in order to maintain consistency with a federal ban, first introduced in 1988, that bars federal funds from going towards needle exchanges. Its lawyers also believed that state law against the possession of drug paraphernalia would prohibit it from giving out free syringes.
But Scott Burris, a law professor at Temple University, said that neither of those reasons were deal breakers.
Burris said while the state’s interpretation of the paraphernalia law was not unreasonable, Allegheny County, Philadelphia, and the state Pharmacy Board have acted on the legal view that the law does not prevent syringe distribution through needle exchanges.
Additionally, Burris said, if Gov. Tom Corbett’s administration strongly believes that state law bars it from funding needle exchanges, the least it could do is encourage the General Assembly to change the wording in the paraphernalia law. Pennsylvania is one of the few states, facing a significant heroin problem, that hasn’t altered its paraphernalia law to better accommodate needle exchanges.
“It’s just a matter of political will,” Burris said.
Christine Cronkright, a spokeswoman for the Governor’s Office, said that the Corbett administration would need to thoroughly review any proposed changes to the current law.
“But it’s not something we’re currently looking into at this time,” she said in an emailed statement. “Nor are we aware of any legislative initiatives to that end either.”
Lawrence, the former heroin addict who contracted hepatitis, is now 26 and has since been cured of the disease after $84,000 worth of treatment.
While Lawrence said he’s grateful to be cured of hepatitis, he will never know exactly when he contracted the disease or how many other people he might have unwittingly spread it to as a heroin addict.
If needle exchanges were available when he was a user, he said, they might have stopped both he and his friends from passing on the disease to countless others.
“You can’t stop people from using drugs,” he said. “That’s just not going to happen. But I know having a needle exchange is a lot cheaper than $84,000 per person.”
The Underground Librarian 
