Rick Jaenisch underwent treatment six times before hiswas cured in 2017. Each time his doctors recommended a different combination of medications, his insurer would deny the initial request before finally approving it. This sometimes delayed his care for months, even after he developed end-stage liver disease and was awaiting a liver transplant.
“At this point, treatment should be very easy to access,” said Jaenisch, now 37 and director of outreach and education at the Open Biopharma Research and Training Institute, a group at nonprofit in Carlsbad, California. “I am the person for whom treatment should be ideal.”
But it was never easy. Jaenisch was diagnosed in 1999 at age 12, after his father took him to a San Diego hospital because Jaenisch showed him his urine was brown, a sign that it contained blood. Doctors determined he likely contracted the disease at birth from his mother, a former dental surgery assistant who learned she had the virus only after her son’s diagnosis.
People infected with the viral disease, which is usually spread through blood contact, often do seemingly well for years. An estimated 40% of the more than 2 million people infected in the United States don’t even know they have it, while the virus could be quietly damaging their livers, causing scarring, liver failure or liver cancer .
With several highly effective and less expensive treatments currently available on the market, one would expect that almost everyone known to have hepatitis C would be cured. But a Centers for Disease Control and Prevention study released in June found that’s far from the case. A proposal from the Biden administrationaims to change that.
Overall, the agency’s analysis found that in the decade since the introduction of new antiviral treatments, only about a third of people initially diagnosed with hepatitis C cleared the virus, either through treatment or by the virus disappearing on its own. Most of those infected had health insurance, whether Medicare, Medicaid, or commercial coverage. But even among commercially insured patients, who were most likely to receive treatment, only half of those aged 60 or older had viral clearance by the end of the study period in 2022.
“Unlike HIV, where you have it for the rest of your life, with hepatitis C the time frame is very short, just eight to 12 weeks, and you are cured,” said Carl Schmid, executive director of the HIV+hepatitis policy. Institute. “So why aren’t we doing a better job?”
Experts highlight several obstacles that infected people face. When new treatments were introduced, cost was a determining factor. Private plans and public Medicaid programs have limited spending on expensive drugs by making them more difficult to obtain, imposing prior authorization requirements, restricting access to people with already damaged livers, or requiring that patients abstain from consuming medications to qualify, among other restrictions.
By the time Jaenisch’s case was cured at age 31, the landscape of hepatitis C treatment had changed dramatically. A revolutionary once-a-day pill was introduced in 2013, replacing a grueling regimen of weekly interferon injections whose success rates were uncertain and side effects painful. The first of these “direct-acting antivirals” treated the disease in eight to 12 weeks, with few side effects and cure rates exceeding 95 percent. As more drugs were approved, the initial eye-watering price of $84,000 for a treatment gradually dropped to around $20,000.
As drug prices have fallen and under pressure from advocates and public health experts, many states have removed some of the hurdles that made it difficult to approve a treatment.
There are still other obstacles that have little to do with the price of the drug.
Ronni Marks, a former hepatitis C patient, advocates on behalf of patients who often fall through the cracks. These include rural residents and the uninsured, transgender people, or injection drug users. An estimated 13% of people in US prisons each year have chronic hepatitis C infection, but access to care is limited.
Marks said many disadvantaged people need help getting services. “In many cases, they have no way to travel, or they are not able to get tested,” she said.
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 medications, treatment and follow-up care to people with HIV, it does not There is no coordinated and comprehensive program. program for hepatitis C patients.
“In a perfect world, this would have been a good model to replicate,” said Sonia Canzater, senior project director of the Infectious Disease Initiative at Georgetown’s O’Neill Institute for National and Global Law. health. “That’s probably never going to happen. The closest thing we can hope for is this national plan, which would systematically provide access so people aren’t beholden to their state’s policies.”
The national plan Canzater is referring to is a five-year, $12.3 billion initiative to eliminate hepatitis C that was included in President Joe Biden’s budget proposal for fiscal year 2024. The former director of the National Institutes of Health, Francis Collins, is leading the Biden administration’s initiative.
The program :
* Expedite approval of point-of-care diagnostic tests, allowing patients to be screened and begin treatment in a single visit, rather than the current multi-step process.
* Improve access to medications for vulnerable groups such as those who are uninsured, incarcerated, in the Medicaid program, or members of the American Indian and Alaska Native populations using a subscription model. Known as the Netflix model, this approach allows the government to negotiate a fixed rate with pharmaceutical companies that would cover treatment for all individuals in groups who need it.
* Build the public health infrastructure to educate, identify and treat people with hepatitis C, including supporting universal testing; expanded testing, provider training, and additional care coordination support; and connect people to services.
“It’s both a matter of compassion and good financial sense,” Collins said, referring to an analysis by Harvard researchers that found the program would prevent 24,000 deaths and save 18 .1 billion dollars in health spending over 10 years.
Collins said legislation to implement the Biden plan, currently in draft form, should be introduced now that Congress has reconvened after its summer recess. The Congressional Budget Office has not yet estimated its cost.
Until the emergence of COVID-19 in 2020, hepatitis C had the dubious distinction of killing more Americans each year – nearly 20,000 – than any other infectious disease. Advocates are happy the virus is finally getting the attention they feel it deserves. Still, they are not convinced that Congress will support more than $5 billion in new funding. The rest would come in the form of savings on existing programs. But, they say, it’s a step in the right direction.
“I’m thrilled” that there is a federal proposal to end hepatitis C, said Lorren Sandt, executive director of Caring Ambassadors, a nonprofit in Oregon City, Ore., which helps people manage chronic illnesses like hepatitis C. I’ve cried so many times with joy since this came out.”
KFF Health Newsformerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism on health issues and is one of the major operating programs of KFF — the independent source for health policy research, polling and journalism.