Across the United States, an estimated 3.5 million Americans are living with hepatitis C virus (HCV). The liver disease is the most common chronic blood-borne infection in the country and outranks both HIV and hepatitis B in total new cases and related deaths.
Despite the availability of new therapies that can cure more than 95 percent of people with HCV in as little as eight to 12 weeks, the Centers for Disease Control and Prevention (CDC) says hepatitis C remains a deadly threat in the United States. Last spring, the agency reported that although thousands of people have been cured over the past four years, the number of new HCV infections increased by nearly 300 percent nationwide between 2010 and 2015. The report also identified the most likely culprit behind this recent spike: Americans’ skyrocketing use of heroin, opioids and other injection drugs.
“Every week, I see young people, who often have been shut off from their prescription opiates, coming in hooked,” says Lynn Taylor, MD, a practicing physician, clinical researcher and associate professor of medicine at Brown University in Providence, Rhode Island. “Then they turn to heroin, and the next thing I know, they see me for hep C.”
But the country’s losing battle against the epidemic doesn’t have to turn out this way, says Taylor. She is one of a growing number of doctors across the United States who want to treat hep C and opioid addiction as a syndemic—interrelated health crises that must be diagnosed, managed and treated together.
“We know that a rapid scale-up of treating the transmitting population is the best way to stem the spread of hep C and the number of new cases,” says Taylor, who has been an HCV doc for nearly 17 years and has coauthored dozens of papers on the topic.
Since switching her focus from HIV to hepatitis C in the late ’90s, Taylor has worked relentlessly to cure the liver virus among individuals often considered to be some of the toughest to treat: injection drug users, people with substance abuse issues, people coinfected with HIV, people living with mental illness and people with any combination of these.
“Most of my patients have seen doctor after doctor and have been told for years, ‘You’re not a candidate’—or, in other words, ‘You’re not worthy of treatment,’” she says.
According to Taylor, a typical day in the fight against the opioid and HCV syndemic involves treating these high-risk folks wherever it’s easiest to find them—whether that’s at Miriam Hospital’s HIV/HCV program at Brown University or at local HIV or methadone clinics and needle exchange programs. When she’s not treating hep C, Taylor also works as a general internist and a buprenorphine provider, extending primary care and medication-assisted therapy to people across the hep C risk spectrum.
Over the last two decades, Taylor has also used her advocacy-informed practice to help establish free HIV and HCV testing, education, vaccination and referral sites, as well as on-site HCV care at methadone maintenance programs, HIV clinics and needle exchange sites throughout Rhode Island.
Much of this advocacy involves writing research papers, teaching at local universities and collaborating with groups like the World Health Organization, the International Network on Hepatitis Care in Substance Users and RI Defeats Hep C to push her policy objectives in the real world.
“Lynn is really leading the charge for treating people with hepatitis C in the state,” says Amy Nunn, executive director of the Rhode Island Public Health Institute. “She’s [also] done a lot of work treating people with a history of substance use and helping build the evidence base that it’s possible.”
At the heart of Taylor’s current battle is the fact that many providers, health insurers and state Medicaid officials across the country continue to restrict access to hepatitis C treatment for people with a history of or ongoing substance use issues. Her recent research papers echo the latest recommendations of groups such as the American Association for the Study of Liver Diseases (AASLD) that say this practice is discriminatory and ill-advised.
“We can’t condemn a diverse population of people who may use drugs because a small percentage might get reinfected, or they can’t take their meds, or all of these assumptions which happen to be false,” Taylor, an AASLD member, argues. “If we don’t push, nothing is going to happen. There’s no reason for people to be dying of this virus.”
However, despite her efforts, Taylor’s hep C practice in Rhode Island—like many others in the United States—is experiencing an influx of new patients, as the combined crises of HCV and addiction continue to spiral out of control.
According to the most recent epidemiological findings from the Rhode Island Department of Health, the number of reported deaths related to hepatitis C more than quadrupled in the New England state between 2005 and 2014. What’s more, the number of inpatient hospitalizations for hepatitis C increased sixfold during that same time period.
The study also found that more than one third of injection drug users and 17 percent of Rhode Island’s prison population test positive for the virus. Overall, state health officials say anywhere between 3.1 and 5.1 percent of Rhode Islanders could be infected—nearly four times higher than the national average.
Meanwhile, Taylor believes both the state and the rest of the country aren’t doing nearly enough to help hepatitis C doctors like her combat the tide of new infections.
“For 17 years I’ve been waiting for a strategic plan,” she says. “We form coalitions, and then they dissolve. We hear, ‘Let’s have a meeting,’ and then nothing happens. What we need is a coordinated, comprehensive, sustained multipronged approach to get us down to zero.”
Aside from various insurers’ restrictions and reluctance to treat hep C among people with a history of substance use, Taylor is often thwarted by Rhode Island Medicaid. “It is really way behind the times and supports illegal rationing of hepatitis C medications and will provide access to the new hep C pills only for people with advanced liver disease—patients with fibrosis stage 3 and 4,” she explains.
In fact, Rhode Island is currently one of 10 states that continue to restrict hep C treatment in this way. And while Taylor often collaborates with the Rhode Island Department of Health in her efforts to end the syndemic, she’s also one of its biggest critics regarding how slow the agency has been to open up access to treatment.
“Every meeting ends up being about money and lack of resources,” Taylor laments, citing the $1,000-per-pill cost that has led state Medicaid programs and insurers to set limits on the number of patients able to access hep C treatment. “People say, ‘Yes, we know over the long term that it’s cost-effective [to treat people for hepatitis C], but we can’t; we don’t have the up-front resources.’ Well, then, we need to reallocate whatever resources we do have.”
In order to do this, Taylor says, advocates and policymakers ought to look at existing models for care established by HIV treatment advocates and apply them to hepatitis C. She also thinks doctors and insurers need to step back and look at the work she and other grassroots providers are doing to curb new infections and try to replicate them across the United States.
“Dr. Taylor is an innovative, creative and passionate leader when it comes to hepatitis C prevention and treatment. She is truly an inspiration to me,” says Nicole Alexander-Scott, MD, MPH, the director of the Rhode Island Department of Health. “By raising awareness, increasing the reach of testing, improving linkages to care and building infrastructure for a sustainable model of care in our state, she has put Rhode Island at the forefront of work in eliminating hepatitis C.”
To “get us down to zero,” the doctor, teacher, mentor and activist will continue caring and advocating for people with HIV, hepatitis C and addiction.
“I think I’m doing the best work I can do when I’m in a room taking care of patients,” Taylor says. “But then what I learn from patients every day has to go out and influence clinical research and policy change. With poverty and health care disparities and so many people right now who are on the brink of losing health insurance, we need to do a lot better.”