Our 2019 Plenary Speaker, Dr. Anne Spaulding, quoted in "Hepatitis C Fights Hinges on Prisons" in U.S. News and World Report

February 05, 2019

Lawsuits across the country are seeking better but more expensive care for inmates with the infectious disease, who can spread it upon their release.

INMATES AND THEIR advocates are pushing for legal and political fixes to fight hepatitis C, a public health problem experts say can't be solved in the U.S. overall without first tackling it within prison walls.

The hepatitis C virus attacks the liver and can turn deadly: Research shows it was associated with more fatalities in 2013 than 60 other infectious conditions combined – HIV and tuberculosis included. And though the disease affects 1 percent of the general population, according to the Centers for Disease Control and Prevention, the prison prevalence is thought to be around 17 percent.

The prevalence of hepatitis C among prison inmates is much higher than among the general population.

INMATES AND THEIR advocates are pushing for legal and political fixes to fight hepatitis C, a public health problem experts say can't be solved in the U.S. overall without first tackling it within prison walls.

The hepatitis C virus attacks the liver and can turn deadly: Research shows it was associated with more fatalities in 2013 than 60 other infectious conditions combined – HIV and tuberculosis included. And though the disease affects 1 percent of the general population, according to the Centers for Disease Control and Prevention, the prison prevalence is thought to be around 17 percent.

When infected and formerly incarcerated people re-enter society, they can spread the blood-borne virus through intravenous drug use with dirty needles and, less often, sexual contact. Linked to the opioid crisis, hepatitis C spiked by more than 200 percent in 30 states since the period 2010-2014, Yale Universityresearchers note in a 2018 follow-up article to a landmark study they published two years earlier.

"Since the prison system has the highest concentration of people living with the virus, failure to scale up treatment in prisons dooms any effort to eliminate hepatitis C in America," the 2018 article states.

A sign of hope came in 2013, when drugs with around a 90 percent cure rate for hepatitis C began reaching the market. At first, these direct-acting antivirals, known as DAAs, cost up to a staggering $94,500 for complete treatment. Negotiations between state officials and drug companies, plus the release of generics, have lowered prices, though it can still cost $20,000 or more for an eight- to 12-week course. And if the disease progresses to threatening the patient's life, an exorbitantly expensive liver transplant may become necessary.

Still, once the medical community accepted these medications as the norm, prisoners who knew they had hepatitis C asked for them. And when corrections officials said no, citing the treatment cost, prisoners' lawyers started demanding the highly effective drugs.
 
The U.S. Supreme Court armed them with precedent establishingthat officials cannot act with deliberate indifference to inmates' serious health needs, and that denying them treatment can subject them to needless suffering and violate the Eighth Amendment ban on cruel and unusual punishment.

"They are words in the Constitution, but they mean something – they have real consequences, a real impact on lives. They're not just words from 350 years ago," says Gregg Gonsalves, senior author of the Yale study and co-director of the Global Health Justice Partnership at Yale Law School, where he teaches.

In this instance, the words mean that prisoners are the only hepatitis C patients with a constitutional right to health care. Though the concept may seem 

unfair, it has a solid basis in law, says Robert Katz, a professor at Indiana University's Robert H. McKinney School of Law.

"Everyone should have a right to health care," he says. "Inmates present a special case, however, because when the state incarcerates people, it prevents them from obtaining for themselves the things they need to live, including food and health care."

In recent years, state responses to the call to provide inmates with hepatitis C drugs have varied with prison size, disease prevalence, politics and cultural factors that influence how infected prisoners are perceived.

For example, in places with low incarceration rates, "the people in your prison are going to not resemble the man or woman in the mainstream community," says Dr. Anne Spaulding of Emory University in Atlanta, an infectious disease and prison health care specialist. In these places, like Vermont or Rhode Island, inmates can be viewed unsympathetically as "others" or "the worst of the worst."

Last year, California lawmakers took the unusual step of putting $105.8 million in the state budget to treat its 22,000 hepatitis C-infected inmates. Earlier, prison officials in Michigan and New Mexico, concerned that court directives could force changes to their procedures, voluntarily started treating inmates with DAAs.

In about a dozen states, prisoner advocates filed class-action lawsuits to spur change. Cases in Massachusetts and Colorado were settled. A Pennsylvania settlement is awaiting approval by a federal judge.

David Rudovsky, an attorney for inmates in the Pennsylvania suit, says their deal is modeled after the Colorado pact that provides treatment for all prisoners with hepatitis C, as opposed to only the more serious cases.

 

 

"We thought everybody ought to be treated and we were willing to go to trial on that issue," Rudovsky says. "What we agreed to was to give the state some time (to treat everyone), so that's how we resolved our case."

In still other states where legal action has been taken over hepatitis C treatment for inmates, federal judges may eventually order compliance on a set timeline. Among them: IndianaAlabamaMissouriTennesseeIdaho and North Carolina.

In Florida, a federal judge in Tallahassee released a strongly worded order in 2017 requiring inmate treatment. The Florida Department of Corrections "must move with 'alacrity,'" U.S. District Judge Mark Walker wrote. "This Court will not tolerate further foot-dragging."

Walker's order put Florida at the head of the pack in terms of leaving a legal landmark about the future of care for inmates with hepatitis C. "It was a big win for us," says Randall Berg Jr., president emeritus of the Florida Justice Institute in Miami and the inmates' class counsel.

Indeed, prisoner advocates in other states are watching Florida, where Walker, chief of the U.S. District Court for the Northern District of Florida, is expected to make permanent his 2017 temporary injunction ordering hepatitis C treatment.

"We've followed the Florida case closely, and cited the court's reasoning in our briefs. It's broken important ground," says Katz of Indiana University, who's serving as co-counsel for the Indiana class action.

A Florida inmate won't soon forget how hard his lawyers and Florida Justice Institute staff worked to obtain the drugs that cured his hepatitis C.

"I get out of prison in four years and I intend to live a healthy, thankful life, paying back andforward," Benjamin Kennedy wrote to Berg from Okeechobee Correctional Institution. "Y'all truly saved my life. And I'm grateful to y'all beyond words."

The commitment that prison officials bring to the hepatitis C eradication battle, legally required or not, appears to be crucial to its success. Public health professionals extol the leadership of retired Rhode Island Department of Corrections chief A.T. Wall, a past president of the Association of State Correctional Administrators. Soon after DAAs appeared, Wall agreed to pay what could have amounted to $85,000 apiece for sick prisoners' medications.

The cost "is a source of concern for us," he told the Providence Journal in 2014. "But we have a constitutional obligation to provide the same level of health care to incarcerated offenders as someone would receive in the community."

"We don't feel there is an option not to treat," he said.

Dr. John Hagan, who as medical director for the North Dakota Department of Corrections and Rehabilitation serves a small prison system containing around 1,800 people, says if he had the resources, he'd treat the 16 percent who have hepatitis C immediately.

"I don't find any state unwilling to treat hep C. We really all want to, but we find ourselves constrained by the incredible pricing system," Hagan says. He's asking North Dakota legislators for $1.8 million in budget funding for hepatitis C care, far short of the $4 million to $5 million he estimates universal treatment would cost.

State prison officials usually are denied access to a pricing system that discounts drugs for Medicaid and the Veterans Health Administration. Still, Spaulding of Emory says, the DAAs-pricing dilemma could be resolved if the Department of Health and Human Services endorsed state use of a mechanism called nominal pricing, which would involve classifying prisons as "safety net" health care providers to give them access to lower prices.

"Prisons are an under-tapped market for manufacturers," she and fellow authors wrote in the Journal of Correctional Health Care. "At lower prices, more medication would be available for persons in prison, who are at highest risk for transmitting (hepatitis C virus) to the broader community once released. Nominal pricing is a win-win situation for both pharmaceutical companies and incarcerated patients."

Under the model, a drug company would have to be willing to trade short-term profits for long-term gains based on volume. So far, no company or state has stepped up to try it, Spaulding says, estimating the cost of a full DAA treatment would plummet to around $2,000 to $4,000.

"We would love to get a state to try to go and get that price," she says.

Meanwhile, by making inmate treatment a big-ticket item, California set an example that Gonsalves, the Yale study author, would like to see others follow. "The best hope for an overall solution isn't litigation, but a robust federal and state policy response like California has," he says.

So what did it take to convince the government of California to find the money?

"It took time," says Anne Donnelly, director of health care policy for the nonprofit Project Inform. The group's informal lobbying campaign for better hepatitis C care for inmates began in 2013, as soon as DAAs appeared.

"We just kept talking to people over and over again," she says. "We had a good internal advocate, champions in the government who were also helpful to us. Mostly it was just continued pressure that this was the right thing to do, with data and stories, and we just kept the conversation going."

Donnelly realizes California is more progressive about certain issues than states where a similar campaign likely would fail. Her advice for other activists is based on that knowledge.

"If your state is one of those states where getting any money to be compassionate to anyone is tough, a lawsuit can be brilliant," she says. "Use all and any tools that you have at hand when people aren't listening and don't care to listen. That's when you've got to go the other route."