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For decades, many Americans with hepatitis C have struggled to get tested or died waiting for a cure that remained inaccessibly expensive within the nation’s fractured health care system. President Joe Biden’s new proposed budget to Congress seeks to change that with a $5 billion plan to end hepatitis C nationwide by 2030.
If Congress keeps intact this part of the White House proposal released Thursday, the Biden administration would use that money over the next five years to provide rapid diagnostic testing, expand access to proven treatment for patients covered by Medicaid, Medicare and commercial insurance, and to boost public health strategies to catch, cure and prevent illness. These changes could translate to tens of billions of dollars in savings in a few years. But it remains unclear whether this Congress – divided over long-term investments and short-term cost cuts – will make it reality.
In the United States, more than 2.4 million Americans have hepatitis C, or HCV – a viral liver infection spread through contact with an infected person’s blood. Historically, blood transfusions triggered waves of infections, going back to the post-war period. More recently, shared needles used to inject drugs have ignited outbreaks, particularly among high-risk populations. A pregnant person can also pass the virus onto their fetus.
Megan McGrew/ PBS NewsHour
There’s no vaccine to prevent these infections, which often go undetected for years – experts say the virus’ stealthy nature and inadequate access to testing mean that many more people likely have hepatitis C and don’t even know it. Over time, the virus quietly kills the liver and triggers chronic illness, such as liver cancer or cirrhosis.
That kind of prolonged suffering is “not something you wish on anybody,” said Dr. Francis Collins, the former director of the National Institutes of Health who is spearheading the White House’s national response to end hepatitis C.
Yet dozens of U.S. states still have restrictive policies that hinder access to a cure for this life-threatening illness, especially for people on Medicaid. Under these policies, health officials, as well as care and insurance providers, can reject a patient’s request for the drug sofosbuvir if they fail a sobriety test, do not secure a physician’s prior authorization or cannot prove their liver is damaged enough to warrant treatment.
“All these barriers were put up, and many people weren’t getting discovered or treated. Now, many of them are dying,” Collins said.
Most requests for liver transplants come from hepatitis patients, he said, and there are not enough donated organs for those who need them. In 2021, fewer than 9,300 liver transplants were conducted in 2021. A year earlier, 66,700 Americans were newly diagnosed with hepatitis C.
Faced with the chance to prevent further sickness and death across generations of Americans, Collins, whose brother-in-law slowly succumbed to the disease, said it’s difficult to “look the other way.”
Dr. Francis Collins joined Amna Nawaz to discuss how Biden’s budget addresses combatting hepatitis C and more.
“This is one time that we as a nation have the obligation and opportunity to save hundreds of thousands more lives and to save money long-term as a result of that,” he said.
Hepatitis C was identified in 1989, thanks to contributions from Harvey J. Alter, Michael Houghton and Charles M. Rice. Research that started in the late 1960s helped launch a new screening method that used viral DNA, bacteria and human antibodies to decipher the genetic sequence of what had been considered a mystery pathogen. That innovation led to hepatitis C testing, transformed the practice of donating blood and earned them the 2020 Nobel Prize in medicine.
But testing has been cumbersome for many people, especially those with greater risk of exposure and few resources. Patients have to visit health care providers multiple times, and lab technicians typically need to process specimens for days or weeks before producing a diagnosis. People with unreliable access to transportation or housing may be unable to make follow-up appointments to receive their results.
In 2013, researchers created sofosbuvir, a wonder drug that cures more than 95 percent of HCV patients with few side effects. But the antiviral medication at the time cost $1,000 per pill; a full 12-week course added up to some $84,000, placing it far out of reach for most people. The high price inspired policies that fueled disparities, harming patients and communities most at risk and in need.
Influenced by the hefty price tag and stigma, many state Medicaid offices made this lifesaving remedy more difficult for people to get — adding requirements for sobriety tests, prior authorization or proof of liver damage, or a combination of barriers. Patients diagnosed with other diseases do not encounter such stigma and barriers to care, said Dr. Lynn Taylor, an internal medicine physician at the University of Rhode Island. Taylor has devoted 25 years of her career to improving access to testing and treatment for people struggling with infectious disease as a result of drug use, including hepatitis C and HIV.
“If I had a patient with lung cancer and I said, ‘I’m not going to treat you until you stop smoking,’ I’d lose my license,” she said.
In many ways, Taylor said, hepatitis C serves as “the poster child for health care disparities.”
Over the last decade, the nation’s incidence rate of the acute form of the disease has doubled, according to the Centers for Disease Control and Prevention — a sign that “we’re going in the wrong direction altogether,” Taylor said.
Before the COVID-19 pandemic, hepatitis c surpassed all other causes of infectious disease-related death in the country. The virus posed the most disproportionate risk of acute illness to Native American communities, people who inject drugs, the unhoused and those involved in the criminal justice system.
These resulting disparities are “unacceptable,” said Dr. John Ward, a scientist who directs the Coalition for Global Hepatitis Elimination at the Task Force for Global Health. For decades, Ward has worked to reduce hepatitis in the U.S., long before the nation began to consider taking more concrete steps to prevent further spread.
“The policy is lagging behind the science, resulting in care denied and life lost,” he said.
In January 2021, the Trump administration pledged to put the U.S. on track to eliminate hepatitis C by 2030. Yet rates have soared since then, amid COVID and on-going public health crises around substance use.
In the last few years, some states have slowly rolled back Medicaid restrictions for hepatitis C patients. So far, 31 states still require a physician’s prior authorization before allowing a Medicaid patient to receive treatment, according to the Center for Health Law and Policy Innovation at Harvard Law School. Twenty states restrict retreatment if someone contracts the virus after being cured. Five states mandate that a patient abstain from substance use before or while undergoing treatment, and two states — Arkansas and South Dakota — still require proof that a patient’s liver has been damaged enough to merit treatment.
But broader action is not happening quickly enough to save lives. That’s where the Biden administration’s plan comes in. Its main aims are to expand single-visit testing and to deploy a national subscription model where the federal government negotiates lump sum amounts of sofosbuvir with drug manufacturers, making it more affordable for states. That idea was launched in Louisiana and Washington state and has already been credited with lower rates of infections.
The Biden plan would also better fund the nation’s hobbled public health infrastructure – particularly the efforts of community health workers, case managers and providers – to screen, treat and support patients while also working to develop a hepatitis C vaccine.
If the U.S. can’t fix a relatively small-scale problem when the solution already exists, said Neeraj Sood, a health economist at the University of Southern California, he has little hope that the nation will be able to agree on how to contain, cure and treat more widespread chronic illnesses that cause exponentially more financial burden and suffering. For years, Sood has consulted with the White House and the National Academies of Sciences, Engineering and Medicine on the health and economic benefits of a national strategy that rids the nation of this hepatitis C.
“People who are in charge — why doesn’t this make them upset?” he said. “We have a solution, and it’s like letting money lie on the sidewalk.”
Laura Santhanam is the Health Reporter and Coordinating Producer for Polling for the PBS NewsHour, where she has also worked as the Data Producer. Follow @LauraSanthanam
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