Francis Collins, the former longtime head of the National Institutes of Health and founder of BioLogos, has seen deaths in his work as a physician and researcher. But some of those have been personal: He watched his brother-in-law die a slow and painful death from complications of hepatitis C, an often fatal disease that attacks the liver. Rick Boterf died two years before the cure for hepatitis C became available in 2014.
In the decade since the cure has become available, most Americans diagnosed with hepatitis C have not received the cure. Collins is now spearheading a push from the Biden administration to eliminate the disease by funding more treatment to populations that may not currently have any access. The measure is awaiting a budget score that will forecast its future in Congress.
“It’s difficult to appreciate how serious and dangerous this viral illness is, because most infected people will live without any symptoms for a decade or more,” Collins told CT. Those suffering from the disease tend to be drug users and those who are incarcerated. Infections have increased in the last decade with the explosion of the drug crisis.
“Reaching those with hepatitis C fits with our responsibility to help vulnerable and marginalized people that Jesus called ‘the least of these,’” Collins added. “Curing hepatitis C is almost a moral imperative—the opportunity in our hands to prevent 15,000 deaths every year.”
More than 2.4 million Americans have hepatitis C, according to the Centers for Disease Control and Prevention, but there haven’t been the funds and systems to make the oral pill cure widely available. Only 34 percent of Americans diagnosed from 2013 to 2022 were cured.
Fifteen countries, including Egypt and Australia, are on track to eliminate hepatitis C by 2030 through screening and treatment programs. The United States is not one of those 15.
Collins, in his work as head of the Human Genome Project, was one of the scientists who discovered the gene for cystic fibrosis. That discovery led to a breakthrough treatment for a disease that was previously a death sentence. Now, the scientist and Christian wants to eliminate another deathly illness.
Hepatitis C infections spread through blood, usually by people injecting illicit drugs. As drug use has risen with the opioid crisis, so have infections. Roughly 70,000 Americans contract hepatitis C every year, especially in non-white communities. Scientists noted a surprising dip in infections in 2022, but that was among white Americans.
The disease can lead to cirrhosis as well as liver cancer and can require a liver transplant, which is expensive or impossible to obtain.
Louise R., whose last name is withheld to protect sensitive health information, was diagnosed while incarcerated in the 1990s. She said the war on drugs and the influx of women into incarceration had “consequences for Black and brown women especially.” She said she received poor medical treatment while incarcerated.
“I knew the seriousness of it, but I didn’t have a way out,” she said.
After her release, Louise was trying to hold down a job and raise young children.
“I wasn’t looking for anything to be in my way,” she said. “[For] women who have been incarcerated, that’s one of the things that hinders us from being fully in our lives when we come home—the challenges we have medically that were not addressed during our incarceration.”
When the hepatitis C cure finally became available, the drug was expensive, so she worried whether her insurance would cover it. But she received approval to do the treatment.
Without insurance or a trusted doctor who educated and advised her on the process, “I don’t know what I would have done,” she said. “I couldn’t believe it, when I was tested and didn’t have the disease anymore.”
Eliminating hepatitis C in the US heavily depends on treating those who are incarcerated. But studies have found that uneven health care in prisons, limited funding, and limited follow-up after prisoners’ release has made this a difficult goal to achieve.
Collins has some congressional Republicans and Democrats onboard with the elimination plan, but it’s still up in the air. The big question is how the Congressional Budget Office will score the cost of such a program. Collins says it can only save money on long-term health costs, since it prevents expenses like a liver transplant or hospital stays.
The White House budget requested $11 billion for the program over five years, a steep price tag. One study, supported in part by federal agencies, estimated that over the next ten years the initiative would save $18 billion in direct health care costs, with $13 billion of those savings accruing to the federal government.
The program would reduce the cost of the treatment drugs by paying drug companies a set amount like a subscription rather than per dose, a program that Louisiana piloted at the state level. That was a model that Louisiana Sen. Bill Cassidy, a Republican and liver doctor, supported.
Right now, people who have support systems in place and jobs with health insurance tend to be the ones who can obtain treatment. But that’s not the story for many with the disease.
Jen S., whose last name is also withheld, found out she had hepatitis C in 2004. She was pregnant and in drug recovery at the time.
“It was a huge worry, having a small child and a blood-borne infection that you don’t know how to treat,” she said. “I didn’t have any counseling around it.”
Raising her son while she had the virus, she would be afraid of treating his wounds if he fell, on the chance that she might have a cut that would infect him. The virus is highly infectious with even invisible amounts of blood.
“That time with our children is really precious. I wish I had known more and been treated earlier,” she said.
Jen finally received the cure in 2019. Being cleared of the virus made her realize how much it was affecting her in ways she didn’t realize.
“I gained control of my health in other ways once I was treated,” she said. “A healthy choice makes it easier to make other healthy choices.”
But she noted that she had a lot of “assets” in her life to help support her on the treatment process: a job, a house, family, and a friend who did the treatment at the same time as her. Many who are in drug recovery don’t have that. “I’m really grateful I was able to get it,” she said.
Jen said that churches could help get more people into testing and treatment if they were already doing work in the community, like through mobile clinics or needle exchanges. Those kinds of outreaches would be key for populations with the virus that may not go to doctors regularly.
Reaching patients on the margins who have hepatitis C has been a problem with state-level programs. Some faith-based health ministries, like Los Angeles Christian Health Centers, advertise that they provide care for hepatitis C.
Collins also knows the project will be difficult.
“Once in a generation, we get a chance to eliminate a disease,” Collins said. “That time is now, but we’re not making it happen.”
