Joe Watson has lived a troubled life. He had a traumatic childhood, spent years addicted to cocaine and meth and is now serving a 20 year sentence in the Jefferson City Correction Center for second degree murder.
But the 47-year-old Kansas City, Missouri, native was shaken to his core by the death of his friend and fellow inmate Stevie Jimerson from hepatitis C early last year.
“When I seen them allow Stevie Jimerson to die when he was begging them for treatment, I knew that if I was going to get any treatment, I had to figure out a way do it on my own,” Watson says.
About one in seven prison inmates in Missouri have hepatitis C, a slow-moving but potentially deadly liver infection that is often spread through drug needles or sexual contact.
However, almost none of those inmates gets treated, and, as Watson discovered, even the most motivated to get care still face long odds.
Watson started by investigating the prison’s hepatitis C policies.
He found out that around 2013, Missouri joined other states in phasing out older drugs in favor of new breakthrough drugs called direct-acting antivirals.
Unlike older interferon-based treatment, which is highly toxic and often doesn’t work, direct-acting antiviral drugs, the first of which was approved in the US in 2013, are highly effective at treating hepatitis C with far fewer side effects.
But the cost of treating all the eligible inmates with the new $84,000 drugs would easily wipe out the state’s entire healthcare budget.
So, the new guidelines allowed prisons to prioritize sickest inmates first before moving on to others.
Watson thought that made sense, but he says it didn’t jibe with what he had seen.
“Guys that are really bad should be treated first. I agree with that,” Watson says. “The problem with the priority list is they’re not descending down the list.”
Through a Sunshine Law records request, KCUR obtained internal state documents that show in fact, Missouri prisons appear to be backsliding on hepatitis C treatment.
Before the treatment changes, scores of inmates were treated each year with older drugs, but since then, fewer than 20 inmates per year have completed treatment.
Meanwhile, the rate of hepatitis C in Missouri prisons has crept up from 13 percent in 2012 to 15 percent in 2017.
The data led Watson to a disturbing conclusion. Unless something changed, he wouldn’t get the drugs until his condition got a lot worse.
“I don’t want to be a priority one,” Watson says. “I don’t want to wait around until I have advanced cirrhosis or cancer in order to be treated.”
Watson’s fiancé, Rachael Collins of High Hill, Missouri, says she was exasperated by Watson’s situation.
“You’re screaming for help, but no one’s listening to you,” Collins says.
She came up with an alternate plan. She suggested that she, along with Watson’s friends and family, could buy the drugs for him.
They would be administered to Watson by the prison health service, which is managed by Corizon Health, Inc., a private company based in Brentwood, Tennessee.
She first approached drugmaker Gilead Sciences about buying the drug directly, but after being refused, she discovered companies in India that offer the same drug at a fraction of the U.S. price.
“I found the top company in India that makes it,” Collins says. “And I can get it shipped to me or to him for $1495, but I can’t.”
When Watson sent a letter asking the Missouri Department of Corrections about buying the drug on their own, he received a reply reading, “Since medical services are contracted with an outside vendor, individual billing and payment system is not an option.”
Deacon Rich Von Gunten of Camdenton, Missouri, has ministered in Missouri prisons for years, is a friend of Watson’s and says he’s been dismayed by the decline in hepatitis C treatment.
“It’s an immoral thing, as far as I’m concerned, Von Gunten says.
Von Gunten and other inmate advocates, including the ACLU and MacArthur Justice Center, which are suing the state over its treatment policies, say allowing so many sick prisoners to go without care is cruel and unusual punishment and a violation of their human rights.
“As great a country as we are, I think that those people that are incarcerated could be taken care of better than they are,” Von Gunten says.
Corizon Health said it couldn’t comment for this story because of pending litigation.
The Missouri Department of Corrections didn’t respond to questions.
Joe Watson contacted KCUR about his situation after reading a story about Stevie Jimerson, his friend who died in prison due to hepatitis C.
Watson said details of his situation could be confirmed by Janet Moore, the director of the Center for Braille and Narration Production, a braille translation program operated by Missouri’s Department of Social Services that Watson worked for since 2012.
KCUR’s calls to the Center for Braille and Narration Production not returned, but Watson says that a few days later Moore called him into a private meeting.
“She told me that she had to terminate me,” Watson says. “And I asked her why. And she said, ‘Because you had a reporter call me.’”
An email provided by Watson which was sent by Moore to CBNP employees reads:
“Because of a recent incident, in which a now-former CBNP employee included my name and the Center in a communication to a media agency regarding a person matter, I am directing all CBNP inmate employees to refrain from using the Center, or my person as means of advancing any personal issues whether it’s within the institution, and State of Missouri agency, media outlet or friend or family communication etc.”
Watson says the email was sent shortly after his termination.
The Center for Braille and Narration Production did not respond to follow up questions regarding Watson.
Watson says he’s running low on options and appears to have made no progress obtaining treatment.
His blood tests show his hepatitis C is still at a relatively low level, but he says he’s experiencing fatigue and abdominal pain that could be signs of advancing liver disease.
But he says what bothers him the most aren’t those symptoms. It’s fear.
“Knowing that I don’t have any treatment? That’s the worst part of it. I mean, it’s terrifying,” Watson says. “I mean, we have people being allow to suffer when there’s a cure for this disease.”
Alex Smith is a health reporter for KCUR. You can reach him at alexs@kcur.org.