Rick Jaenisch went through six treatments until he was cured of hepatitis C in 2017. Each time his doctor recommended a different combination of drugs, his insurance company first denied the request and then approved it.
The process delayed his care by months even after he developed end-stage liver disease and was awaiting a liver transplant.
“Back then, access to treatments was supposed to be easy,” said Jaenisch, 37, director of outreach and education at the Open Biopharmaceutical Research and Training Institute, a nonprofit organization in Carlsbad, Calif.
But it won’t be easy. Jaenisch was diagnosed in 1999, when he was 12 years old, when his father took him to a hospital in San Diego because his urine was brown, indicating blood. Doctors determined he may have been infected with the disease at birth. His mother, a dental surgical assistant, learned she had the virus after her son was diagnosed.
Hepatitis C virus is usually spread through blood contact, and infected people can remain healthy for many years. It is estimated that more than 2 million people in the United States are infected, 40% of whom don’t even know they have the virus, but the virus may be quietly damaging the liver, causing scarring, liver failure or cancer.
With several very effective and low-cost treatments now on the market, it is expected that almost everyone who knows they have hepatitis C will have a chance of being cured. However, a study published in June by the U.S. Centers for Disease Control and Prevention (CDC) suggests that is not the case. The Biden administration’s proposal to eliminate the disease within five years aims to change that.
Overall, in the decade after new antiviral treatments were introduced, only one-third of people initially diagnosed with hepatitis C cleared the virus, either through treatment or because The virus was removed.
Most patients have some type of health insurance, whether it’s Medicare, Medicaid or private insurance. But even among patients with private insurance, who may have better access to treatment, only half of those over 60 had cleared the virus by the end of the study period in 2022.
“Unlike HIV, which is lifelong, the cure time for hepatitis C is very short, eight to 12 weeks,” said Carl Schmid, executive director of the HIV+ Hepatitis Policy Institute. “So why don’t we do better?”
According to experts, patients encounter a range of obstacles. Cost is a very important factor when introducing new treatments.
Private plans and state Medicaid programs have limited spending to make these drugs more difficult to obtain, imposed prior authorization requirements, restricted access to these drugs to people with already damaged livers, or required patients to avoid using these drugs to qualify, among others.
By the time Jaenisch recovered at age 31, the landscape of hepatitis C treatment had fundamentally changed. An innovative once-daily pill was launched in 2013, replacing the grueling regimen of weekly interferon injections, which had uncertain success rates and serious side effects.
The first “direct-acting antiviral drug” treated the disease in 8 to 12 weeks with few side effects and a cure rate of over 95%. As more drugs are approved, the initial price of $84,000 for a course of treatment has gradually dropped to around $20,000.
With drug prices falling and pressure from activists and public health experts, many states have removed some of the barriers that have made it difficult to approve treatments.
However, there are many more barriers that have nothing to do with drug prices.
Ronni Marks, who lives with hepatitis C, is a voice for patients who are often ignored. These include residents of rural areas and people who are uninsured, transgender or people who inject drugs. An estimated 13% of people in U.S. prisons and detention centers develop chronic hepatitis C infection each year, yet access to care in these settings is limited.
Marks said many vulnerable people need help accessing services. “In many cases, they are unable to travel or they are in a situation that does not allow them to get tested,” he explained.
Unlike the federal Ryan White HIV/AIDS Program, which for more than 30 years has provided grants to cities, states and community groups to provide drugs, treatment and follow-up care to people living with HIV, there is no coordinated, comprehensive program for patients. Have hepatitis C.
“In a perfect world, this would be a great model to replicate,” said Sonia Canzater, program director of the Infectious Disease Initiative at the O’Neill Institute for National and Global Health Law in Georgetown. “This may never be the case. It’s going to happen. What we want most is for this national program to systematically provide access so that people don’t get trapped in state policies.”
The national plan Kanzate was referring to is a $12.3 billion, five-year plan to eliminate hepatitis C that is included in President Joe Biden’s fiscal 2024 budget proposal. Francis Collins, the former director of the National Institutes of Health, is leading the effort in the Biden administration.
This is what the program does:
- It will accelerate the approval of point-of-care diagnostic tests, allowing patients to be screened and begin treatment in a single visit.
- It will use a subscription model to improve access to medicines for vulnerable populations, such as the uninsured, incarcerated people, people on Medicaid or members of American Indians and Alaska Natives. The government will negotiate a flat rate with pharmaceutical companies to cover the cost of treatment for all individuals in needy groups.
- Public health infrastructure will be built to educate, identify and treat people with hepatitis C, including supporting universal screening; scaling up testing, training providers and supporting people to connect to services.
“It makes both compassionate sense and economic sense,” Collins said, pointing to an analysis by Harvard University researchers that found the plan would prevent 24,000 deaths and save $18.1 billion in health care spending over 10 years.
Collins noted that a law to implement Biden’s plan is expected to be proposed and is currently in the draft stage. The Congressional Budget Office has not yet estimated its cost.
Before the Covid-19 outbreak in 2020, hepatitis C killed more Americans each year (nearly 20,000) than any other infectious disease. Activists are pleased that the virus is finally getting the attention they feel it deserves.
“I’m excited” there’s a federal proposal to end hepatitis C, said Lorren Sandt, executive director of Ambassadors of Care, a nonprofit in Oregon City, Ore., that helps people manage chronic diseases like hepatitis C. disease. Since it was made public, I have cried for joy many times. “
This story was produced by KFF health newsis a national newsroom focused on in-depth coverage of health issues and is one of KFF’s premier programs as an independent source of health policy research, polling and news.
