Rick Jaenisch underwent six treatments before being cured of hepatitis C in 2017. Each time his doctor recommended a different combination of drugs, his insurance company denied the initial request and then ultimately approved it. This sometimes delayed his care for months, even after he developed end-stage liver disease and was awaiting a liver transplant.
“By then, treatment should be readily available,” said Jaenisch, now 37. The Open Biopharmaceutical Research and Training Institute is a non-profit organization located in Carlsbad, California. “I’m the best person for treatment.”
But it won’t be easy. Jaenisch was diagnosed in 1999 at age 12 when his father took him to a hospital in San Diego after Jaenisch showed him that his urine was brown, indicating there was blood in it. Doctors determined he likely contracted the disease from his mother at birth. His mother, a former dental surgical assistant, learned she had the virus only after her son was diagnosed.
People infected with this viral disease, which is usually spread through blood contact, often appear to be doing well for many years. An estimated 40% more than 2 million people In the United States, infected people don’t even know they have the virus, and the virus can silently damage their livers, causing scarring, liver failure or liver cancer.
With several highly effective, low-cost treatments now on the market, one might expect that nearly everyone who knows they have hepatitis C will be cured. But a study published in June by the U.S. Centers for Disease Control and Prevention found that was far from the case. The Biden administration’s proposal to eliminate the disease within five years aims to change that.
Overall, the agency’s analysis found that only about one-third of people were diagnosed with hepatitis C for the first time in the decade after new antiviral treatments were introduced Clear the virus with treatment or with the virus clearing on its own. Most people who are infected have some type of health insurance, whether it’s Medicare, Medicaid or commercial insurance. But even among commercially insured patients who were most likely to receive treatment, only half of those 60 or older had cleared the virus by the end of the study period in 2022.
“Unlike HIV, which stays with you for the rest of your life, hepatitis C takes a very short time, just eight to 12 weeks, and you can recover from it,” he said. Carl Schmid, Executive Director of the HIV+ Hepatitis Policy Institute. “So why don’t we do better?”
Experts point to several obstacles faced by those infected. When new treatments are introduced, cost is an important factor. Private plans and state Medicaid programs limit spending on expensive drugs, including restrictions that make it harder to obtain them, impose prior authorization requirements, limit use to people with already damaged livers, or require patients to abstain from drugs to qualify.
When Jaenisch’s case was cured at age 31, the landscape of hepatitis C treatment had changed dramatically. In 2013, a breakthrough once-daily pill was introduced to replace the arduous regimen of taking pills. Weekly injections of interferon This has uncertain success rates and punishing 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, initial jaw-dropping List price $84,000 A course of treatment has gradually It fell to about $20,000.
As drug prices fall, many states, under pressure from advocates and public health experts, have removed some of the barriers that make it difficult for treatments to get approved.
There are many more barriers that have nothing to do with drug prices.
Ronni Marks is a former hepatitis C patient who advocates for patients who are often overlooked. These include rural residents and those who are uninsured, transgender or injecting drug users.one An estimated 13% of people People with chronic hepatitis C infections enter U.S. prisons every year, but access to care there is limited.
Marks said many vulnerable people need help accessing services. “In many cases, they can’t travel, or they can’t get tested,” she said.
different from federation The Ryan White HIV/AIDS Program has for more than 30 years provided grants to cities, states and community groups to provide medications, treatment and follow-up care to people living with HIV, but has not provided a coordinated, comprehensive program for patients living with hepatitis C .
“In a perfect world, this would be a great model to replicate,” he said Sonia Canzater is senior program director of the Infectious Diseases Initiative at the O’Neill Institute for National and Global Health Law at Georgetown University. “That may never happen. What we would most like to have is this national program that systematically provides access so that people are not beholden to the policies of their state.”
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 a leading advocate in the Biden administration.
The program will:
- Expedite approval of point-of-care diagnostic tests that enable patients to be screened and begin treatment in a single visit, rather than the current multi-step process.
- Improve access to medicines for vulnerable populations, such as those who are uninsured, incarcerated, part of Medicaid or members of American Indians and Alaska Natives, through the use of subscription models. This approach, known as the Netflix model, enables governments to negotiate with pharmaceutical companies to establish a fee that will cover the cost of treatment for all individuals in those groups who need it.
- Build public health infrastructure to educate, identify, and treat people with hepatitis C, including supporting universal screening; expand testing, provider training, and additional support for care coordination; and connect people to services.
“It’s as much about compassion as it is about good financial sense,” Collins said. Analysis by Harvard University researchers The plan is expected to prevent 24,000 deaths and save $18.1 billion in health care spending over 10 years.
Collins said legislation to implement Biden’s plan, currently in draft form, is expected to be introduced when Congress reconvenes after its summer recess. The Congressional Budget Office has not yet estimated its cost.
Before the 2020 COVID-19 outbreak, there were questionable distinctions between hepatitis C and: Killing more Americans every year — nearly 20,000 — more than any other infectious disease. Supporters are glad the virus is finally getting the attention they think it deserves. Still, they don’t believe Congress will support more than $5 billion in new funding. The remainder will be provided in the form of savings from existing plans. But, they say, it’s a step in the right direction.
“I’m pleased” there is a federal proposal to end hepatitis C, said Lorren Sandt, the organization’s executive director. Ambassadors of Care is a nonprofit organization in Oregon City, Oregon that helps people manage chronic diseases like hepatitis C. “I’ve cried with joy many times since this book came out.”
This article was published by KFF Health News on September 20, 2023. Reprinted with permission.