Thousands of Virginia inmates are believed to have hepatitis C and can’t access the cure

The state treated Elmo Augustus Reid’s hepatitis C once before. It didn’t work.

An inmate at the Buckingham Correctional Center in Dillwyn, Reid was treated in 2013 once he had fibrosis, or scarring, on his liver. He was given drugs that had been used to treat hepatitis C for years, but with little likelihood of success. They were notorious for causing sometimes life-changing side effects, like fevers, anemia and crushing fatigue.

The treatment lasted about a year, and it didn’t cure Reid’s hepatitis C, according to his lawyer George Rutherglen, a University of Virginia School of Law professor.

But then, the U.S. Food and Drug Administration approved a new drug that was lauded as a cure for the infection, ridding 90 to 95 percent of patients of hepatitis C, which the Centers for Disease Control and Prevention estimates infects 3.5 million Americans.

But Reid couldn’t get that cure, not until he enlisted Rutherglen’s help and sued several officials with the Virginia Department of Corrections and the case reached a settlement.

Reid’s case isn’t unique. More than 5,000 of the roughly 30,000 offenders in Virginia could have the potentially deadly disease, according to a VCU Health study published in the Journal of Correctional Health Care earlier this year. But according to the department, only 452 were treated between March 2015 and July 2018, meaning thousands are living with the disease while a cure is now available.

The estimates of how many offenders in the U.S. have hepatitis C — which can cause cirrhosis and liver cancer — vary, from 12 to 35 percent, according to the Centers for Disease Control and Prevention, to between 30 and 60 percent, the American Association for the Study of Liver Disease estimates.

“In some cases, I’ve heard higher numbers,” said Dr. Rebecca Dillingham, an infectious disease physician with the University of Virginia School of Medicine. “One of the big issues with incarcerated populations is that we don’t really know. We know it’s big, but we don’t truly know the magnitude, in part because there has been a reluctance to test without clear pathways for treatment.”

In 2016 there were more than 18,000 deaths due to chronic hepatitis C, according to the CDC, though that is believed to be a low estimate — in part because most people live with the disease for years without knowing they have it.

The Virginia Department of Corrections screens for hepatitis C in those with elevated liver enzymes or who have a reported risk factor for the infection, such as a history of sharing intravenous drug equipment or if they have liver disease.

And the state’s guidelines largely reserve treatment for those who already have liver disease, though it does make exceptions for some, such as inmates who enter the system in the midst of treatment already.

That essentially means most inmates aren’t yet sick enough to be cured and that they must wait until they have usually irreversible liver damage before they can get treatment.

Right now, 47 offenders are being treated for hepatitis C by VCU Health, according to the Department of Corrections.

It is not clear if the department has plans to expand access to treatment to all offenders, not just those with advanced disease. Though spokeswoman Lisa Kinney responded to some emailed questions, she did not respond to requests to speak with a department official about hepatitis C treatment.

“Just because they’re incarcerated doesn’t mean they don’t have a right to medical treatment,” Dillingham said.

A hefty pricetag

When the new drugs were first released about four years ago, they came with some sticker shock: $84,000 for one course of treatment, which typically lasts 12 weeks.

It is a high price, even for a drug that virtually cures what is often a lifelong disease.

“It truly has revolutionized the treatment, and also really transformed the lives of many people in that older generation and the baby boomer generation who expected to have to live out their lives with this specter, often, that is associated with a tremendous amount of stigma, hanging over them,” Dillingham said.

Initially, most insurers had similar requirements for treatment as the Virginia Department of Corrections, reserving the pricey drugs for only those with advanced liver disease. Over time, though, commercial insurers and even public programs began changing their requirements.

In October 2016, Virginia updated its regulations to allow all Medicaid enrollees diagnosed with hepatitis C, regardless of the severity of the illness, access to treatment, though the program does have sobriety requirements.

The same access doesn’t apply to inmates, though, and that problem is not unique to Virginia. One survey estimates that 144,000 inmates nationwide are not being treated.

That’s because many other states are similarly grappling with the price, even though it has come down since the drugs were released.

The cost of the drugs range from around $26,000 for a three-month course of treatment to nearly $55,000, a Virginia Department of Corrections spokeswoman said.

“The difficulty that the state confronts is that the investment required is way beyond what has been appropriated by the General Assembly,” Rutherglen, the UVA law professor who represented Reid, said.

According to a presentation that Harold Clarke, the director of the Virginia Department of Corrections, made to the Senate Finance Public Safety Subcommittee in January, last year it cost nearly $6 million to treat 138 offenders.

But advocates argue that treating inmates could have a positive effect on society as a whole by making a significant impact on overall hepatitis C numbers. About one-third of those with the disease have been incarcerated at some point. Across the country and in Virginia, rates of hepatitis C have been rising, largely due to the opioid epidemic. 

“Thankfully most people don’t spend their whole lives in prison and they’re released back into the community,” Dillingham said. “So those people might be released back into the community, where if they are not effectively linked to care, they have the capacity to spread the virus further.”

There are savings associated with spending money on treatment, too. The VCU Health study notes that the benefit of treating inmates with hepatitis C to the department, “in terms of cost savings from liver-related morbidity and mortality and to society as a whole is expected to be significant.”

And more and more often, courts have been ordering states to expand their treatment guidelines for inmates. Four inmates in Colorado reached a $41 million settlement with the state to ensure all infected inmates are treated.

“I think it’s a growing trend, and I’m glad our case contributed to the trend because we really want to move public policy in the right direction,” Rutherglen said.

“And I think the Department of Corrections, given the resources from the legislature, certainly would take that step. A population of people with hepatitis C becomes harder and harder to treat if the disease progresses to cirrhosis of the liver and liver cancer.”