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As Americans fight the Covid-19 pandemic, the epidemic caused by the hepatitis C virus also continues to rage, especially among marginalized communities. And while some barriers to accessing health care have been eliminated during Covid-19, barriers persist for treating hepatitis C.
To progress toward eliminating this disabling and deadly disease, the U.S. must eliminate Medicaid restrictions on hepatitis C treatment and educate providers about ongoing stigma that disenfranchises certain communities.
In 2016, the U.S. joined the World Health Organization and more than 190 partner countries in pledging to eliminate viral hepatitis by 2030. But as of today, the U.S. is not on track to meet that goal, despite the availability of highly effective, curative, direct-acting antiviral medication for hepatitis C. In fact, many state Medicaid programs restrict access to hepatitis C treatment by requiring patients to have severe liver disease, be treated by a specialist, and/or demonstrate sobriety, all of which create unnecessary barriers to a curative treatment.
Advocacy and litigation have resulted in some easing of Medicaid treatment restrictions since the National Viral Hepatitis Roundtable and the Center for Health Law and Policy Innovation at Harvard Law School started tracking hepatitis C treatment barriers in 2017. As of August 2020, 30 states have either eliminated or reduced their severe liver disease restrictions, 20 have scaled back their prescriber restrictions, and 17 have relaxed their sobriety restrictions.
The persistent sobriety restrictions create a barrier in the fight to eliminate hepatitis C. By requiring that patients to undergo additional screening and counseling or to demonstrate a period of abstinence from drugs or alcohol for up to six months, sobriety restrictions can lead to patients being lost to follow-up or discouraging them from being treated at all.
Hepatitis C rates have been rising since 2010 as a result of increased injection drug use stemming from the opioid crisis, especially among those between the ages of 20 and 39. That’s why in April of this year, the U.S. Centers for Disease Control and Prevention updated its hepatitis C guidelines to recommend that all adults over 18 receive a one-time test for hepatitis C and that individuals who remain at risk, including people who inject drugs, are screened regularly.
Sobriety restrictions create unnecessary barriers to care. Hepatitis C treatment is just as effective among people who inject drugs, and a recent review of hepatitis C responses in Australia, Canada, and the U.S. showed that uptake of hepatitis C treatment was actually “higher among marginalized populations,” including people who inject drugs.
In addition, new research from the Center for Health Law and Policy Innovation concludes that sobriety requirements for hepatitis C treatment violate the Americans With Disabilities Act, which prohibits discriminating against persons with disabilities in public services (like Medicaid) — including people with substance use disorders.
Finally, sobriety restrictions are in direct conflict with the medical standard of care and perpetuate stigma and discrimination against underserved populations and people who inject drugs or drink alcohol.
Simply eliminating sobriety requirements for hepatitis C treatment, however, does not always increase access to care. Indiana, for example, removed sobriety restrictions for Medicaid patients in 2019, yet people who inject drugs continue facing hurdles and harmful stigma when seeking care.
In my role with the Indiana Recovery Alliance, I regularly hear from patients who are seeking hepatitis C treatment that they have been denied care for one reason or another. I learned of one person seeking treatment who could not get a referral to an infectious disease or gastrointestinal specialist unless they demonstrated 60 days of sobriety — despite no state requirement for sobriety before treatment. In another example, a referring clinician used stigmatizing and hurtful language that discouraged the patient from seeking treatment, potentially leading to worse health outcomes for the individual. These examples demonstrate that beyond removing restrictions to care, we must also work with provider and clinician communities to eliminate discrimination and fight stigma against people who use drugs or alcohol.
To improve public health, especially during a global pandemic, policymakers should evaluate and remove the discriminatory policies that limit access to hepatitis C treatment and harm reduction services by people who use drugs or alcohol. We must also educate providers about unknown biases and stigma that they may perpetuate when treating people who drink alcohol or use drugs. To effectively fight hepatitis C and progress towards elimination, everyone must be able to access the treatment they have the right to.
Nick Voyles is a member of the National Viral Hepatitis Roundtable Advisory Committee, a program manager at the Indiana Recovery Alliance, and a member of the Urban Survivors Union.
Food Law & Policy, Commentary
A grounding legal education in the Food Law and Policy Clinic
May 18, 2023