A little over a decade ago, I watched my brother in-law Rick Boterf die of complications from infection with the hepatitis C virus that took his health, his vibrant energy and ultimately his life.
A husband, father and practical joker, Rick designed and built intricate boat interiors in Florida. But then he experienced the slow onset of signs of liver failure, followed by an excruciating five years on the liver transplant list. At the time of his transplant surgery, an unrecognized liver cancer was discovered. Ultimately, Rick died in his sleep, a heartbreaking ending for a fine man who had suffered terribly at the hands of this destructive virus.
It was only two years later, in October 2014, that medical science provided a cure for hepatitis C infection. Based on groundbreaking research that later was recognized by a Nobel Prize, the treatment is simple — one pill a day for eight to 12 weeks, with essentially no side effects, and a 95 percent cure rate.
When the cure became available, I was serving as director of the National Institutes of Health. I was overjoyed that a cure had been approved, but the news was bittersweet. What gave me hope was thinking of the many other individuals and their families who would be spared from the misery that Rick and our family experienced. And to a significant extent, that hope was justified: These medications have cured about a million people in the United States.
But nearly a decade later, at least 2.4 million Americans remain infected with hepatitis C. About two in five people with hepatitis C don’t even know that they have the virus. Of those who do, many do not have access to the cure. Congress has an opportunity to turn this ongoing human tragedy into a public health advancement, by providing support for a five-year project to eliminate hepatitis C in the United States. But the time available for approval is growing short.
Hepatitis C progresses slowly. Over years, the virus causes fibrosis of the liver that can result in cirrhosis, esophageal bleeding and liver failure requiring transplantation. Hepatitis C is also the leading cause of liver cancer, responsible for half of the 40,000 annual liver cancer cases in the United States. Each year, about 15,000 Americans die from hepatitis C, many in their 40s and 50s. Given the safe and effective cure available for the last nine years, the correct number of deaths in 2023 should be zero.
Put simply, we are squandering one of the most important medical advances of the 21st century. It’s time to eliminate this threat to the health of Americans.
It’s no secret what has gone wrong. The cost of curative medications remains stubbornly high, so many insurance companies and Medicaid programs have erected barriers to coverage, requiring, for instance, abstinence from drugs and alcohol before people can receive treatment, referral to a specialist, or that the patient already shows liver scarring. Relatively few doctors offer treatment, and many sites where people at risk come for care do not even offer testing, let alone the cure. The result is that fewer than one in three people diagnosed with active infection get timely treatment.
After stepping down as N.I.H. director in 2021, I was asked to serve as the acting science adviser to President Biden. I learned that many other countries — including the United Kingdom and Australia — have taken great strides toward hepatitis C elimination. Egypt is essentially there. Will the United States be last? That can’t be the right answer. So I was delighted when in March, President Biden came out in favor of a five-year program to put the United States on track to eliminate hepatitis C.
The plan includes an innovative approach to provide broad access to curative medications, modeled on a successful effort in Louisiana. Under this approach, sometimes known as the “Netflix model,” a drug company or companies agree to provide full access to medications for a population in need in exchange for a set lump sum payment. In the current proposal, the populations who would have access to free hepatitis C drugs are Medicaid enrollees, the uninsured, Native Americans, and those in the prison and jail systems. If structured correctly, many more people can get lifesaving care and the cost per cure drops significantly.
Greater access to medications is necessary for a successful hepatitis C elimination program, but it is not sufficient. That’s why the plan also includes training, technical support and resources for primary care offices, federally qualified health centers, drug treatment centers, and jails and prisons, where rates of infection can reach 40 percent or more. To help more people find out whether they are infected, the effort will also help make available point-of-care tests that diagnose hepatitis C infection in less than an hour, allowing treatment to start in a single visit. That would be a major advance over the current tests, which require multiple clinic visits over weeks to return results and start treatment.
I’m not the only one inspired by the opportunity to end this devastating disease. I’m finding a lot of support among both Republicans and Democrats in Congress, from all parts of the country. But a key question is whether the effort can gain the full bipartisan support it needs to move in this Congress.
I believe it can. People treated for hepatitis C will avoid very expensive downstream medical needs for transplantation and cancer treatment. Furthermore, a cured person cannot pass it on to others; as a result, every case treated today means multiple cases averted in the future. An expert group has estimated that a national initiative to end hepatitis would save society more than $18 billion in health care costs over the next decade, with $13.3 billion of that savings accruing to the federal government.
Eliminating hepatitis C is the compassionate response for a nation that cares about all of its people — but it is also deficit reduction. It’s costing us taxpayers much more to live with hepatitis C than to cure it. Without action, we will continue to doom many more families to go through the same pain that mine did with Rick’s suffering and death. Inaction is indefensible.
Francis Collins served as the director of the National Institutes of Health from 2009 to 2021. He leads the White House initiative to eliminate hepatitis C.
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