Why Is It Hard for People Who Inject Drugs to Get Hepatitis C Treatment?

Over the past several years, people who inject drugs (PWID), especially millennials, have begun to outrank baby boomers as the group most at risk of becoming infected with the hepatitis C virus (HCV), according to the U.S. Department of Health & Human Services (HHS). HCV is spread through the blood and can be transmitted by sharing needles and syringes that are contaminated with infected blood.

At the same time, though, PWID have become the group of people most likely to be denied highly effective treatments, called direct-acting antivirals (DAA). This has been in large part due to wide-ranging misperceptions around substance use disorders. If you’ve been turned down for access to DAAs, understand why — and then take steps to advocate for yourself and get the treatment you need.

An Unparalleled Drug for HCV

For most people with hepatitis C, the gold-standard treatment is a course of a DAAs. These drugs are so effective against HCV, it’s not a stretch to describe them as a cure: According to the Centers for Disease Control and Prevention (CDC), these drugs completely clear HCV infections in at least 95 percent of cases.

They’re so effective that the World Health Organization has proposed a plan that includes DAAs to eliminate hepatitis C as a public health threat by 2030.

Medications for other viral diseases, such as HIV and hepatitis B, merely reduce the amount of virus in the body rather than completely wipe it out, so they need to be taken for life. By comparison, a typical course of DAAs typically lasts just 12 to 24 weeks.

“I would say hepatitis C treatment is miraculous,” sums up David Goodman-Meza, MD, an assistant professor in the division of infectious diseases at the David Geffen School of Medicine at UCLA.

Why PWID Are Denied Treatment

The reasons PWID are often denied access to hepatitis C treatment can be boiled down to two primary stigmas:

Continued drug use PWID are often required to be sober for at least six months before they’re given treatment, based on a belief that they won’t take medication as directed. “In medicine, we tend to be paternalistic and think that substance use disorders might interfere with someone’s ability to take their medication,” explains Dr. Goodman-Meza.

This stigma is “very real and very common,” says Yngvild K. Olsen, MD, MPH, director of the Center for Substance Abuse Treatment at the Substance Abuse and Mental Health Services Administration (SAMHSA). “Sometimes [it comes from] insurance companies, sometimes the state, and sometimes even providers.”

Contrary to this stigma, research has found that people who continue to inject drugs also tend to be compliant with their treatment — to encouraging effect. According to a study published in March 2022 in the International Journal of Drug Policy, 93.5 percent of PWID were successfully cured after completing treatment.

“There’s a lot of evidence that people with hepatitis C who actively use drugs can successfully treat themselves,” says Goodman-Meza, who runs a trial evaluating the efficacy of mobile clinical units to improve health outcomes in PWID. In other words, it isn’t necessary to be sober to recover from hepatitis C.

Expense Treatment with DAAs typically costs $20,000–$100,000. This may explain the reluctance of insurance companies and state-sponsored programs like Medicaid to approve treatment.

Yet an analysis published in The American Journal of Managed Care found it was more expensive to let hepatitis C go untreated, since it could result in hospitalizations, than to cover the cost of antiviral medication. The authors estimated that treating hepatitis C with antivirals could save more than $4.3 billion in healthcare costs.

“The barriers society puts up don’t necessarily pan out when you look at them from a different perspective,” Dr. Olsen points out.

Self-Advocating for HCV Treatment

If you are denied access to antivirals because of drug use, it’s important to speak up. Olsen and Goodman-Meza offer these tips for PWID who are seeking treatment for hepatitis C.

Press your case. Addiction status has no bearing on how effective DAAs will be. “Let your doctor know that regardless of your drug use, you want hepatitis C treatment,” Goodman-Meza says.

Go to a different doctor. If yours denies you care, get a second opinion.

Build a support system. Goodman-Meza recommends leaning on friends, family, colleagues, and anyone else who supports you to advocate for you. This network of people can help you talk to your healthcare providers and see your treatment through.

Stay on course. Along with taking antiviral pills daily, you’ll be required to show up for a series of tests over the course of at least 8 to 12 weeks. Don’t skip these. At the same time, don’t be afraid to be honest if you need help sticking to your treatment plan.

Advocate at a state level. “Decisions to expand statewide hepatitis C treatment have come about based on advocacy by people who have HCV and providers who want to expand care,” Olsen says. For instance, at one time, Medicaid would only approve antiviral medication for people who had severe liver damage, she says. Now, the complication isn’t always a prerequisite for hepatitis C treatment.

Prevent reinfection. Don’t share needles: If you do, you can be reinfected with hepatitis C. You can get clean needles from syringe services in your community. Also keep in mind that HCV can live on surfaces for up to three weeks, so it’s risky to share cooking supplies, snorting straws, or even drinking water.

A New Hope for Hepatitis C Treatment Access

People with substance use disorder often fight an uphill battle when seeking medical care for hepatitis C, but there is hope. Medicaid programs in an increasing number of states, including California, Michigan, New York, and Washington, are dropping requirements of sobriety status and disease severity to qualify for treatment.

In addition, doctors and others in the healthcare profession are increasingly rallying to erase the stigma associated with treating people who have substance use disorder and committing to help individuals access hepatitis C treatments, Olsen says. SAMHSA’s Addiction Technology Transfer Center Network and Opioid Response Network provide technical assistance and training for medical professionals.

“Treating hepatitis C is really one of the easiest and most gratifying things for us as physicians to do,” Goodman-Meza says. “It’s a great success to treat and cure somebody who is suffering from a disease that’s potentially fatal. My advice for doctors is to get out and make treatment more widely available.”