Francis Collins, the previous longtime head of the National Institutes of Health and founding father of BioLogos, has seen deaths in his work as a physician and researcher. But a few 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 last decade for the reason that cure has turn into available, most Americans diagnosed with hepatitis C haven’t received the cure. Collins is now spearheading a push from the Biden administration to eliminate the disease by funding more treatment to populations that will not currently have any access. The measure is awaiting a budget rating that may forecast its future in Congress.
“It’s difficult to understand how serious and dangerous this viral illness is, because most infected people will live with none symptoms for a decade or more,” Collins told CT. Those affected by the disease are likely to be drug users and people who’re incarcerated. Infections have increased within the last decade with the explosion of the drug crisis.
“Reaching those with hepatitis C suits with our responsibility to assist vulnerable and marginalized folks that Jesus called ‘the least of those,’” Collins added. “Curing hepatitis C is nearly an ethical imperative—the chance in our hands to stop 15,000 deaths every 12 months.”
More than 2.4 million Americans have hepatitis C, in line with 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 target to eliminate hepatitis C by 2030 through screening and treatment programs. The United States will not be considered one of those 15.
Collins, in his work as head of the Human Genome Project, was considered 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 desires to eliminate one other deathly illness.
Hepatitis C infections spread through blood, often 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 12 months, especially in non-white communities. Scientists noted a surprising dip in infections in 2022, but that was amongst white Americans.
The disease can result in cirrhosis in addition to liver cancer and might require a liver transplant, which is dear or unattainable to acquire.
Louise R., whose last name is withheld to guard sensitive health information, was diagnosed while incarcerated within the Nineteen Nineties. She said the war on drugs and the influx of girls 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 attempting to hold down a job and lift young children.
“I wasn’t on the lookout for anything to be in my way,” she said. “[For] women who’ve been incarcerated, that’s considered one of the things that hinders us from being fully in our lives after we come home—the challenges we’ve medically that weren’t addressed during our incarceration.”
When the hepatitis C cure finally became available, the drug was expensive, so she fearful 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 method, “I don’t know what I might have done,” she said. “I couldn’t consider it, once I was tested and didn’t have the disease anymore.”
Eliminating hepatitis C within the US heavily is determined by treating those that 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 realize.
Collins has some congressional Republicans and Democrats onboard with the elimination plan, but it surely’s still up within the air. The big query is how the Congressional Budget Office will rating the associated fee of such a program. Collins says it might only get monetary savings on long-term health costs, because it prevents expenses like a liver transplant or hospital stays.
The White House budget requested $11 billion for this system over five years, a steep price tag. One study, supported partly by federal agencies, estimated that over the subsequent 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 cut back the associated fee of the treatment drugs by paying drug firms a set amount like a subscription quite than per dose, a program that Louisiana piloted on the state level. That was a model that Louisiana Sen. Bill Cassidy, a Republican and liver doctor, supported.
Right now, individuals who have support systems in place and jobs with medical health insurance are likely to be those who can obtain treatment. But that’s not the story for a lot of with the disease.
Jen S., whose last name can also be withheld, discovered she had hepatitis C in 2004. She was pregnant and in drug recovery on the time.
“It was an enormous worry, having a small child and a blood-borne infection that you simply don’t know how you can treat,” she said. “I didn’t have any counseling around it.”
Raising her son while she had the virus, she could be afraid of treating his wounds if he fell, on the possibility that she may need a cut that may infect him. The virus is very infectious with even invisible amounts of blood.
“That time with our youngsters is absolutely 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 used to be treated,” she said. “A healthy alternative makes it easier to make other healthy decisions.”
But she noted that she had quite a lot of “assets” in her life to assist support her on the treatment process: a job, a house, family, and a friend who did the treatment concurrently her. Many who’re in drug recovery don’t have that. “I’m really grateful I used to be capable of get it,” she said.
Jen said that churches could help get more people into testing and treatment in the event that they were already doing work in the neighborhood, like through mobile clinics or needle exchanges. Those sorts of outreaches could be key for populations with the virus that will not go to doctors often.
Reaching patients on the margins who’ve hepatitis C has been an issue with state-level programs. Some faith-based health ministries, like Los Angeles Christian Health Centers, advertise that they supply look after hepatitis C.
Collins also knows the project will likely be difficult.
“Once in a generation, we get a likelihood to eliminate a disease,” Collins said. “That time is now, but we’re not making it occur.”
