Improving Access to Hepatitis C Treatment: A Proposal for Change
By Michelle Andrews | (TNS) KFF Health News
Having gone through treatment six times before finally being cured of hepatitis C in 2017, Rick Jaenisch knows firsthand the challenges in accessing effective care. Each time, his doctors recommended a different combination of drugs, and his insurer initially denied his requests before eventually approving them, causing delays in his treatment. This was especially frustrating as Jaenisch’s health deteriorated, and he awaited a liver transplant due to end-stage liver disease.
Jaenisch, now 37 and Director of Outreach and Education at Open Biopharma Research and Training Institute, a nonprofit group in Carlsbad, California, believes that treatment should be readily accessible, particularly for patients like him. However, his experience demonstrated that it was never easy.
Jaenisch was diagnosed with hepatitis C in 1999 at age 12, after his father noticed blood in his urine and took him to a San Diego hospital. Doctors determined that he likely contracted the disease at birth from his mother, a former dental surgical assistant who discovered her own infection following her son’s diagnosis.
Hepatitis C is a viral disease primarily transmitted through blood contact. Infected individuals may not exhibit symptoms for years, with an estimated 40% of the 2 million infected Americans unaware of their infection. Meanwhile, the virus quietly damages the liver, leading to scarring, liver failure, or liver cancer.
Although highly effective and cost-efficient treatments are now available on the market, a study conducted by the Centers for Disease Control and Prevention found that the majority of individuals with a diagnosis of hepatitis C fail to clear the virus. Recognizing this issue, the Biden administration has proposed a plan to eliminate the disease within five years.
The study revealed that only about one-third of individuals with an initial diagnosis of hepatitis C successfully cleared the virus through treatment or natural resolution during the decade following the introduction of new antiviral drugs. This included individuals with various forms of health insurance, such as Medicare, Medicaid, or commercial coverage. Even among commercially insured patients, who were more likely to receive treatment, only half of those aged 60 or older achieved viral clearance by 2022.
Carl Schmid, Executive Director of the HIV+Hepatitis Policy Institute, highlights that unlike HIV, where lifelong treatment is necessary, hepatitis C can be cured within a short timeframe of eight to 12 weeks. Despite this, the healthcare system has not effectively addressed barriers preventing better outcomes for infected individuals.
Experts identify several roadblocks that hinder access to treatment for people with hepatitis C. When new treatments were introduced, cost played a significant role. Private plans and state Medicaid programs limited spending on expensive drugs by imposing restrictions such as prior authorization requirements, exclusions for patients with advanced liver damage, or mandatory abstinence from drug use to qualify for treatment.
Fortunately, the landscape of hepatitis C treatment has changed considerably over time. A groundbreaking once-a-day pill was introduced in 2013, replacing the previous regimen of weekly interferon injections with uncertain success rates and severe side effects. These “direct-acting antivirals” offered a shorter treatment duration of eight to 12 weeks, minimal side effects, and cure rates exceeding 95%. Additionally, as more drugs gained approval, the cost of treatment gradually decreased from an initial price of $84,000 per course to around $20,000.
While the reduction in drug prices and pressure from advocates have prompted many states to eliminate barriers to treatment access, other obstacles unrelated to drug costs persist. Ronni Marks, a former hepatitis C patient and advocate, emphasizes the challenges faced by marginalized groups, including rural residents, the uninsured, transgender individuals, and injection drug users. Limited access to care is particularly evident within U.S. jails and prisons, where an estimated 13% of individuals passing through each year have chronic hepatitis C.
To address these issues, Sonia Canzater, Senior Project Director of the Infectious Diseases Initiative at Georgetown’s O’Neill Institute for National and Global Health Law, suggests implementing a comprehensive national program akin to the Ryan White HIV/AIDS Program. However, she concedes that creating such a program is unlikely and that the proposed national plan to eliminate hepatitis C is the best alternative. The plan, included in President Biden’s budget proposal, involves a $12.3 billion initiative over five years.
Key components of the proposed plan include:
- Expediting the approval of point-of-care diagnostic tests to enable same-day screening and treatment initiation, reducing the current multistep process.
- Improving access to medications for vulnerable populations, such as the uninsured, incarcerated individuals, Medicaid recipients, and American Indian and Alaska Native communities, through a subscription model.
- Expanding the public health infrastructure to raise awareness, enhance identification, and ensure efficient treatment of individuals with hepatitis C. This would involve universal screening, increased testing, provider training, additional care coordination, and improved access to services.
Francis Collins, former Director of the National Institutes of Health, is spearheading the initiative on behalf of the Biden administration. Collins emphasizes the compassion and financial benefits associated with the program, citing a projection by Harvard researchers that estimates saving $18.1 billion in health spending over 10 years and preventing 24,000 deaths. Legislation to implement the plan is currently in draft form and is expected to be introduced in Congress following its summer recess.
Prior to the emergence of COVID-19 in 2020, hepatitis C held the unfortunate distinction of causing more annual deaths in the United States than any other infectious disease, claiming nearly 20,000 lives. Advocates for hepatitis C patients are encouraged that the virus is finally receiving the attention it deserves, although they express doubts regarding Congress’s willingness to provide over $5 billion in new funding. However, Lori Sandt, Executive Director of the Caring Ambassadors, a nonprofit organization in Oregon City, Oregon, offers a hopeful perspective, stating that the federal proposal to eradicate hepatitis C is a step in the right direction.
(KFF Health News, formerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs of KFF — the independent source for health policy research, polling, and journalism.)
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