Report: Most people with hep C have not been cured

  • by Liz Highleyman, BAR Contributor
  • Wednesday July 5, 2023
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Dr. Jonathan Mermin. Photo: Courtesy CDC
Dr. Jonathan Mermin. Photo: Courtesy CDC

Most Americans diagnosed with hepatitis C have not been treated and cured despite the availability of well-tolerated antiviral therapy for a decade, according to a new report from the Centers for Disease Control and Prevention.

Nationwide, only a third of people who could benefit from treatment have been cured, and the numbers are even worse for young people and those without health insurance. Cumbersome testing, the high cost of medications, and restrictions on who can access care continue to be barriers. San Francisco has made a concerted effort to treat hepatitis C, but current cure estimates are unavailable.

"Tens of thousands of Americans with hepatitis C are getting liver cancer, suffering liver failure, or dying because they can't access lifesaving medicine," Dr. Jonathan Mermin, director of the National Center for HIV, Viral Hepatitis, STD, and TB Prevention, said in a media statement. "In our nation, no one should have to live knowing a cure for their potentially deadly disease is available but out of reach."

Hepatitis C is caused by a blood-borne virus (HCV) that is commonly transmitted via needles and other drug injection equipment. It can also be transmitted from mother to child during pregnancy and can spread during sex, especially sex between men. About 25% of people with HCV clear the virus naturally, while the rest develop chronic infection that can lead to cirrhosis, liver cancer, and the need for a liver transplant.

Modern direct-acting antivirals, first approved in late 2013, can cure more than 95% of people in two or three months. But their high prices have hampered access and led to restrictive policies. Gilead Sciences' sofosbuvir (Sovaldi), for example, initially cost $84,000 for a course of treatment. New drugs have since entered the market and prices have come down, but treatment remains out of reach for many.

National and local estimates

The Viral Hepatitis National Strategic Plan for the United States calls for at least 80% of people with hepatitis C to be cured by 2030. To assess progress, CDC researchers analyzed data from Quest Diagnostics, a large national commercial laboratory chain, collected between 2013 and 2022.

Just over 1.7 million people were identified as ever having been infected with HCV, as indicated by a positive antibody test. Most (88%) received follow-up HCV RNA testing and 69% were found to have initial active infection with a detectable viral load. Within this group, 34% were considered cured, having either naturally cleared the virus or been successfully treated. Of these, 7% subsequently experienced viral rebound and were considered to have persistent HCV infection or reinfection.

People ages 20 to 29 were least likely to be cured (24%), while those age 60 or older were most likely (42%). People with Medicare coverage had the highest cure rate (45%), followed by those with commercial insurance (40%), those on Medicaid (31%), and those who relied on other payers or were uninsured (23%).

These cure rates are "jarringly low," lead study author Dr. Carolyn Wester said during a June 29 media briefing. "Everyone with hepatitis C deserves the chance to be cured."

The number of people with chronic hepatitis C in San Francisco is unclear. According to its latest Viral Hepatitis C Surveillance Report, the San Francisco Department of Public Health received reports of 4,035 people with probable or confirmed chronic hepatitis C in 2018 and 3,750 such reports in 2019. DPH is currently finalizing the 2022 annual report, a spokesperson told the Bay Area Reporter.

End Hep C SF, the city's initiative to eliminate hepatitis C, estimated that 11,582 people had untreated active HCV infection in 2019, representing about half of those who were ever infected, according to a 2022 medical journal report. People who inject drugs accounted for 73% of people with HCV antibodies and 90% of those with untreated chronic infection. Gay and bisexual men made up about 12% of people with HCV antibodies but only 1% of those with untreated active infection.

"Hepatitis C is an infection that can be overlooked — people who have it may not realize it, even though it can cause serious health issues and over time can be deadly," Jorge Roman, RN, MSN, senior director of clinical services at the San Francisco AIDS Foundation, told the B.A.R. "That's why we offer routine free HCV testing at Magnet as part of our PrEP program and for all of our clients seeking sexually transmitted infection and HIV testing." (Magnet is part of SFAF's Strut health center in the LGBTQ Castro neighborhood.)

Increasing diagnosis and treatment

Barriers to hepatitis C treatment include a cumbersome two-step testing process, the high cost of medications, and restrictive treatment coverage policies. Many state Medicaid programs and private insurers have imposed limitations on who can get treatment, for example, treating only people with advanced liver damage or requiring a period of abstinence from drugs and alcohol. However, California's Medi-Cal program lifted such restrictions in 2018.

Lack of awareness about modern treatment may also be a barrier. "The cure that's been around for 10 years is very simple," former National Institutes of Health director Dr. Francis Collins, who now heads the White House National Hepatitis C Elimination Program, said during the briefing. "A lot of people remember the bad old days when the treatment for hepatitis C [interferon-based therapy] was very toxic and didn't always work."

The White House has requested $11 billion to increase hepatitis C testing and treatment. The administration aims to lower the cost by purchasing a large quantity of the medications at a negotiated price. Making this investment now could save not only tens of thousands of lives but also billions of dollars over the next two decades, as timely antiviral therapy reduces the need to treat liver cancer and liver failure, according to Collins.

In San Francisco, better data are needed to understand the gaps in hepatitis C care and to target services in an evidence-based way, Dr. Annie Luetkemeyer of UCSF and End Hep C SF told the B.A.R.

"Having highly effective medications is necessary, but not sufficient to end our HCV epidemic," Luetkemeyer said. "It is critical that we step up efforts on several fronts, including treating people we know are living with HCV but haven't yet accessed treatment, identifying those who haven't yet tested, and reducing barriers and delays to accessing HCV treatment. Like we do with HIV, people diagnosed with HCV should be immediately linked to care and treatment."

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