'It's Destroyed People's Lives': The Shocking Rise in Hepatitis C-Related Deaths
Hepatitis C is preventable and curable—but it now kills more Americans than any other disease. According to experts, stigma against intravenous drug users and sex workers may be to blame.
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In 2014, deaths related to hepatitis C reached a record high, according to a recent report from the CDC. In fact, according to a second CDC study, in 2013, hepatitis C–related deaths were higher than those caused by 60 other infectious diseases combined, including HIV.
The hepatitis C virus is deadly, although it can lie in wait in a patient's blood for decades without causing symptoms. End-stage hepatitis C results in jaundice, cirrhosis, and liver failure, as the disease slowly but surely attacks the liver; for some people, it eventually causes death. However, the disease is also preventable and curable. While the CDC study says that old cases of hepatitis C largely come from baby boomers who have received unsafe blood transfusions and injections, a new set of cases stems from intravenous drug users.
The number of acute cases has more than doubled between 2010 and 2014. The virus' almost-invisible initial symptoms are partially to blame—about half of the people who have hepatitis C don't know they're infected. Emalie Huriaux, the director of federal and state Affairs at Project Inform, says that, since the liver can be damaged over a number of years, "people may not have any clear symptoms, so they might not seek a test." There's also no vaccine for hepatitis C.
Instead, prevention relies on increased screenings. According to Dr. Nilesh Kalyanaraman, the chief health officer at the Baltimore Health Care for the Homeless, "Getting testing out more consistently will help diagnose people at an earlier stage." These screenings are often difficult to obtain, though. Ryan Clary, the executive director of the National Viral Hepatitis Roundtable, explains that the primary problem is that "there's a lack of awareness, there's a lack of education, and there's a lack of widespread use of screening guidelines among medical providers."
Assuming a patient gets tested, receiving treatment is also difficult. Lindsay Roth, a community organizer at Project Safe, points to bureaucratic restrictions. "Because [treatment is] expensive, there's a lot of red tape for it. People can't prescribe to people on Medicaid because the state doesn't want to shoulder that cost."
Often, doctors' hands are tied because of unfair policies. If a provider were to prescribe treatment, Clary explains, some "insurance companies or the state Medicaid will deny access and in most cases, deny an appeal." This runs counter to clinical treatment recommendations, he says. Though there have been some small victories around these restrictions, "it's very slow."
Policy makers have this narrative that drug users are reckless, that drug users aren't full human beings.
One prominent restrictions is based on how sick you are. Since the cost of treatment is so high, many state Medicaid programs only allow people in the later stages of disease to access treatment. According to Clary, often only people with really advanced liver disease can get medicine. He says that this places a burden on injection drug users. "People who are newly infected with hepatitis C—which is largely through injection drug use—are not going to have advanced liver disease because they're newly infected."
Drug users are also discriminated against based on their level of substance abuse. Clary says that "an insurer will require a patient to be sober/abstinent for a number of months before covering treatment." Dr. Stacey Trooskin, an assistant professor of medicine at the Division of Infectious Diseases and HIV Medicine at Drexel University College of Medicine, similarly explains that "many Medicaid programs around the country and some private insurers require patients to provide a negative urine drug screen and blood alcohol level and a provider's documentation that a patient has abstained from drugs for six months or a year prior to approving life-saving therapies."
Often, this comes from underlying (and incorrect) notions about people who use drugs. Huriaux explains that there's a common narrative among insurance companies and public payers like Medicaid programs that "drug users can't adhere to treatment or that they'll get reinfected." Huriaux says these assumptions are not based on research. In fact, "all of the clinical studies that have been done on hepatitis C treatment show pretty equivalent outcomes for people who use drugs in terms of success of treatment."
Roth points to this as one reason for the high rate of hepatitis among these groups of people. She argues, "If we provide a treatment, and lower the burden of disease in that community, there'd be less transmission." Unfortunately, "policy makers instead have this narrative that drug users are reckless, that drug users aren't full human beings, that they don't deserve full health care."
Roth says an equally important form of prevention for drug users is access to both safe injection equipment and a safe place to inject. But, as Huriaux explains, "in most parts of the US, that's exceedingly hard to do. Many communities in the US have no legal, free access to syringes and other injection equipment."
People are continually pushed out of institutions like hospitals and primary care providers. They feel uncomfortable and they feel unsafe.
Homeless people face similar barriers when trying to access treatment. Dr. Kalyanaraman points to the fact that hepatitis C medications are generally restricted to specialists. While the Baltimore Health Care for the Homeless has implemented a program to train primary care physicians to be able to manage and treat hepatitis C, previously they would have to refer patients to another doctor. For the homeless population he treats, that didn't always work.
"We can refer all we want but if people don't feel comfortable going there, they're not going to go there no matter how important it is to get rid of hepatitis C," Dr. Kalyanaraman tells Broadly. "They also don't want to go to a system where they're looked down upon... where they have to face barriers or hurdles, and, frankly, where they have to pay copays for medications and visits when they're barely scraping by."
Sex workers feel this type of strain of this, too. "I don't think there's anything inherently risky about the sex trade that makes people vulnerable to hepatitis C," Roth explains. "But what happens is people are continually pushed out of institutions like hospitals and primary care providers. They feel uncomfortable and they feel unsafe. They feel like they can't talk to their doctor."
Magalie Lerman, a board member at the Sex Workers Outreach Project-USA, says that since there's stigma against hepatitis and against sex workers, "if someone is honest about being a sex worker in health care settings, they will most likely face... a bunch of stigma." Often, the sex worker gets blamed. "Health care providers are probably going to stigmatize them for selling sex and think that they somehow brought this upon themselves because of their lifestyle."
"This is what the early days of HIV looked like," Roth says. "We don't withhold life-saving or curative treatments for people with other disorders... It's destroyed people's lives."