How the Heroin Crisis Ushered in a Hepatitis C Epidemic

Meanwhile, high prices and stringent requirements from insurers and Big Pharma are limiting access to effective treatment.


Moments after this 20-year-old woman was revived from an opiate overdose, she explained that she had just gotten out of jail and has hepatitis C. / Photo by Chris Sweeney

The first thing Amy does after rising from the brink of death is apologize.

“I’m sorry,” she says, scanning the small crowd of first-responders who have formed a semi-circle around her. She rummages through her scalp with fingernails painted lime green. By a hair, she has missed becoming the city’s latest casualty of a heroin overdose.

It’s just past 2:30 p.m. on a broiling Tuesday afternoon, and Amy (whose name has been changed to protect her privacy) is lying in a small courtyard on the side of Wing Fook Funeral Home, a few blocks from Boston Medical Center. Earlier in the day she had purchased a $20 bag of heroin and snuck behind the fence and shrubs of the funeral home to a set of semi-private benches, where she shot up and overdosed. Boston Emergency Medical Services responded to the call in less than four minutes. Amy, who is 20, is the second overdose they have fielded since noon. Already, they’d treated a 28-year-old man who had collapsed on the men’s room floor at the East Boston Public Library. In about 25 minutes, they will respond to their third overdose of the day, a 35-year-old man they’ll find unconscious on the lawn of South Boston’s Moakley Park.

Wearing gray Abercrombie & Fitch sweatpants and a Red Sox T-shirt, Amy lets out a self-deprecating chuckle when Ed Hassan, a barrel-chested shift commander with Boston EMS, tells her that she wasn’t breathing when he arrived. She was resurrected only after Hassan squeezed a burst of Narcan—a drug that reverses opiate overdoses—up each of her nostrils, then vigorously kneaded his knuckles into her sternum.

As she comes to, Amy continues apologizing. Strapped to one of her ankles is an electronic bracelet. She says she just got out of the South Bay House of Correction, where she landed on an assault and battery charge. In response to a standard line of questioning about her medical history, Amy reveals that she’s allergic to amoxicillin, that she’s taking the bipolar drug Seroquel and the anxiety medication Klonopin. And that she has hepatitis C.

This last revelation, while not surprising, is alarming in what it represents: On top of an opiate epidemic, Boston is experiencing a burgeoning public health crisis within a severely marginalized population. As cheap heroin has flooded the state, hepatitis C rates among 15-24 year olds have surged. Between 2002 and 2009, cases of the virus jumped 74 percent within this young cluster, according to the Massachusetts Department of Public Health, and the most commonly associated risk factor was injection drug use. Worse, the trend shows no sign of abating. In recent years, more than 2,000 new cases of hepatitis C have been recorded annually in the under-30 crowd. If left to flourish, the cost of hepatitis C, in terms of suffering inflicted, lives lost, and health care expenditures, could be staggering.

“The amount of frustration from my colleagues who do hepatitis C care rivals anything I’ve ever seen,” says Camilla Graham, an infectious disease doctor at Beth Israel Deaconess Medical Center who specializes in hepatitis C. “I’ve never experienced this before.”

If Amy is any indication, it’s about to get a lot worse.

• • •

Amid an opiate crisis that’s claiming roughly three lives a day, hepatitis C has been almost entirely overlooked. Attention and resources have been focused on the acute crises of daily overdoses and too few treatment beds. Governor Charlie Baker’s Opioid Addiction Working Group did not make a single specific reference to hepatitis in its 65 recommendations and accompanying action plan, which were released in early June.

But the disease is making its presence known across the Commonwealth—and across the country. Hepatitis C was first discovered in 1989; today, it’s estimated that roughly three million people in the U.S. have what’s known as chronic hepatitis C infection. At this stage, the virus, which on the cellular level looks similar to the end of a medieval flail, is engaged in an ongoing assault against the liver, inflaming the organ and diminishing its ability to perform the metabolic tasks that keep our bodies in tune. This steady attack can eventually give way to all sorts of painful and expensive complications, making hepatitis C the leading cause of cirrhosis and liver cancer. It’s also the most common reason cited for liver transplantations in the U.S., according to the Centers for Disease Control and Prevention.

Up until only a few years ago, treatment for hepatitis C was limited to potent old-school drugs that took months to work. They were not that effective and carried the potential for severe side effects. The treatment landscape changed drastically in 2013, when Gilead Sciences, headquartered in California, launched the drug Sovaldi, a highly effective medication that cost $84,000 for one 12-week-long course of treatment. A year later, the company launched Harvoni, a $95,000 combination treatment consisting of Sovaldi and another drug called ledipasvir.

While these drugs have been a boon for Gilead—combined sales for Harvoni and Sovaldi in the first quarter of this year alone came in at $4.5 billion—some experts say the profits come at the cost of immense suffering. Economist Jeffrey Sachs of Columbia University argued earlier this month that Gilead “should be held responsible, morally and legally, for all of the HCV-related illnesses and deaths that occur as the result of their unacceptable pricing policies.” He went on to blast the company for bilking taxpayers and maximizing profits at a time when hepatitis C is “raging out of control” in some communities in the U.S. He also noted that the actual production cost of Sovaldi is approximately $1 per pill.

Graham, the infectious disease doc, agrees that the price of these drugs is outrageous, but she’s more alarmed by the constraints insurance companies have imposed on patients in need. Even hepatitis C patients who don’t have stigmatizing histories of injection drug use are struggling to get a prescription for these proven therapies. One of the most pernicious strategies insurers have deployed, Graham says, is refusing to pay for the new drugs until a patient’s liver shows signs of “advanced scarring.” In other words, instead of nipping the infection in the proverbial bud, treatment is being delayed at the peril of the patient.

“This is how crazy it is,” Graham says. Imagine, she says, a 54-year-old woman who got hepatitis C many years ago as a result of a blood transfusion. She is aware that she has the infection, her liver has “moderate scarring” but no signs of “advanced scarring,” and she’s visiting Graham specifically to be treated. “What I have to say to that person is, ‘If I were to cure you today—and it would be easy to cure you—you would go back to the general population of people who never had Hepatitis C. You would have no long-term consequences…But, unfortunately, I have to wait until you have developed advanced scarring. And at that point, I’ll be allowed to treat you, but I will then have to screen you for liver cancer every six months for the rest of your life.’”

With each prescription for Sovaldi that she writes, Graham must submit a prior authorization form to the patient’s insurance company, which covers the individual’s medical history and lets the insurer decide whether it will cough up the money for treatment. Prior authorization forms differ among insurers, but it’s not uncommon for them to include questions on whether the person has abstained from drugs and alcohol for the previous six months, whether the person has passed a urine test in the past month, and whether he or she has been in stable psychiatric condition for the past six months.

There is no data showing that mandatory periods of sobriety increases cure rates or decreases drop out rates, Graham says. She adds that doctors always have an obligation to ensure that a patient is ready and able to embark on a course of treatment. But Graham finds the practice of making them wait until their liver is sufficiently scarred before they can be granted a readily available treatment to be unbearable.

“This medicine is so well tolerated and it works so well in most patients that the only reason you would not treat everybody, once they’re ready, willing, and able to be treated, is because of the price. There is no other reason.”

Explaining this over and over to patients has taken its toll on Graham. “I will walk out of clinic just devastated because so many of my patients are crying because I have to tell them I can’t get treatment for them right now,” she says.

• • •

Hepatitis C isn’t the first infectious disease to ravage heroin users. The AIDS epidemic tore through the community from the ’80s into the early aughts. Needle exchanges and education efforts proved hugely successful in stopping the spread of HIV among heroin users. In 2012, the Department of Public Health wrote, “HIV rates among [injection drug users] are at such a low level that eliminating HIV transmission in this population is a feasible goal.”

But hepatitis C is not HIV, and the DPH has expressed trepidation that rising hepatitis C rates could undermine decades of public health gains. Among the many challenges posed by hepatitis C is that it’s a frighteningly hardy pathogen, meaning it can survive on surfaces outside the body for days, whereas HIV lives just a few hours. Moreover, exposures to even very small amounts of infected blood can transmit it.  “Viral loads are typically in the many millions with hepatitis C as opposed to the tens of thousands with HIV,” Graham explains.

This combination of resilience and virulence means that needles aren’t the only thing that need to be swapped out with each hit of heroin—spoons, cotton swabs, tourniquets, any component of a user’s “works” could be a source of infection. As such, much of the load in terms of first-line prevention falls on the handful of state-approved needle exchange programs, which supporters argue are chronically underfunded and dealing with a deluge of new clients. In addition to curbing the risk of transmission by giving out clean gear and disposing of used syringes, needle exchanges are an important linchpin that connect injection drug users with health services, including HIV and hepatitis C testing, says Meghan Hynes, who manages the AIDS Action Committee of Massachusetts’ needle exchange program in Cambridge.

But the reality is that if someone tests positive for the virus, whether they are an injection drug user or not, getting proper treatment is going to be a trying, prolonged ordeal. Even in a state that has near universal health coverage and some of the sharpest minds in medicine, the prognosis is not bright.

As Amy is loaded into the back of the ambulance and shuttled to the emergency department at Boston Medical Center, there is no talk of prior authorization forms or Sovaldi or stages of liver scarring. There are more immediate threats and barriers to care that she must first navigate.

Should we tame the opiate crisis in the coming years, it’s likely there will be an entire generation of young hepatitis C patients, just like Amy, in need of care. Will they be left careening toward cirrhosis, liver cancer, and a host of other horrific maladies? Or will they have access to the lifesaving treatments they need?

“Hopefully, things will change,” Graham says. “For many of us, the goal is to eliminate hepatitis C in the state of Massachusetts. We have all of the components needed to be able to do that, but at the moment we are very far away from the goal.”