Hepatitis C Rare Disease

Research published today suggests that hepatitis C could be a rare disease in the United States by 2036.

The paper appears in Annals of Internal Medicine and is written by health economists and physicians. Using computer models, it shows that new, highly effective medications, coupled with a government recommendation that all baby boomers (i.e. people born between 1945 and 1966) get tested, could stop the disease in its tracks.

The calculation that hepatitis C will be rare by 2036 is based on the assumption that 91 percent of baby boomers will get screened per the government recommendation. The researchers estimated that this would result in the identification of nearly 500,000 new cases of hepatitis C during the next 10 years. They also assumed that 80 percent of those who test positive for the virus will start treatment and that the treatment will be very effective.

Read More: World Hepatitis C Day Highlights Need for Seniors to Get Tested »

But the jury is still out on whether the research makes unrealistic assumptions about how many baby boomers will actually get tested or have access to pricy new treatments.

Experts Dispute Study Findings

Dr. Tamar Taddei, a member of the American Liver Foundation's National Medical Advisory Committee and a professor at the Yale University School of Medicine, said getting primary care doctors to test seniors for hepatitis C won't be easy.

“Liver disease is way down their list,” she said. Most doctors will first test seniors for things like prostate cancer, heart disease, and other conditions that become more common with age.

Alan Franciscus, executive director of the Hepatitis C Support Project, also expressed doubts about the paper’s findings. He told Healthline he does not believe that 91 percent of eligible seniors will get tested. “We need a real good education among patients and providers, and it takes a lot of investment to do that,” he said.

Franciscus went on to say that he believes the report greatly underestimates the number of people infected with hepatitis C in the U.S.

Read More: Am I At Risk for Hepatitis C? »

Jagpreet Chhatwal, author of the Annals of Internal Medicine paper and an assistant professor of health services research at the University of Texas MD Anderson Cancer Center, acknowledged that the new study has limitations. He said that institutionalized patients, such as those in prisons, were not included. He also noted that evidence on the efficacy of future therapies for hepatitis C is lacking.

“We need to make sure we provide timely and affordable access to treatment, on top of screening,” Chhatwal said.

Current CDC estimates put the number of people infected with hepatitis C at three million, most of them baby boomers. The majority do not know they are infected.

Franciscus points to another large demographic that this research may have overlooked – young people, including white, suburban adolescents, who turn to injecting heroin after developing an opiate addiction. 

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“The surveillance system in this country for hepatitis C is abysmal,” Franciscus said. “There is a huge outbreak among young injectors all over the country.”

In 2010, public health officials in Massachusetts noted such an outbreak. Other states followed suit. A year ago, the Altarum Institute prepared a report on the epidemic among young injectors for the U.S. Department of Health and Human Services. The report called for better surveillance, as well as age-appropriate education and prevention techniques and more scientific research.

In expressing her own doubts that hepatitis C will become a rare disease in the near future, Taddei stressed that a test for hepatitis C has only been widely available since 1992.

“We have not understood the natural history of the disease because it is a young disease,” she told Healthline. 

Any conclusions about how the disease will progress over time are premature, she said. “I’m sure it will play itself out," Taddei said. "We need to strategize treatment of people who are really at risk,” — i.e. people facing end-stage liver disease, liver cancer, and liver transplantations.

Treatment Cost Still a Major Hurdle

Meanwhile, the price of the new, highly effective drug sofosbuvir (Sovaldi), which can cure many people of hepatitis C in just 12 weeks, has lawmakers in an uproar.

The $84,000 cost of the regimen has caught the ire of Sen. Charles Grassley, R-Iowa. Grassley is demanding answers from Gilead, maker of Sovaldi, regarding how the pharmaceutical company arrived at the drug’s price.

If everyone eligible for the drug obtains treatment, the cost to healthcare systems would be in the billions of dollars, resulting in higher premiums for everyone, analysts have warned.

Franciscus sees the pot calling the kettle black. “I think it is interesting that the government is so outraged about the pricing when the government has done almost nothing about hepatitis C since the virus was discovered,” he said, adding that little hepatitis C research has received government funding until recently.

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Chhatwal said that with some states expanding their Medicaid programs under the Affordable Care Act, ideally more people will have health insurance and access to treatment.

While the cost of the treatment is a fair consideration when evaluating whether hepatitis C really could become a rare disease by 2036, it is not something he focused on. “For HIV, it took several years to drop the price. In oncology, prices are not going down," Chhatwal said. "Companies don’t have incentives to drop the price. If one company drops the price, the other would have to.”

Chhatwal said he has also conducted research on the value of the new hepatitis C treatments, but is not yet ready to share the results.

Hepatitis C Medications: Cost, Side Effects, and More »