Olen Olson does not claim her son is a saint.
She acknowledges that her son, Joseph Deaguero, has had problems with alcoholism and violence that put him in prison more than once, most recently in Sterling, Colo.
But Olson has also declared herself a “mama bear” when it comes to her son’s well-being. She thinks prison health care is abysmal.
And she is quite certain Deaguero does not deserve to live with hepatitis C when there is a cure available.
When Deaguero finally received the expensive course of virus-eradicating drugs, after Olson and others had worked with the ACLU of Colorado to agitate for wider treatment of hepatitis C, she was vindicated.
“I do not want my son to die. Hopefully, this has had some impact on that,” said Olson, 74, who lives in Aurora, Colo. “They should treat everyone, regardless of whether they are incarcerated or not, regardless of their ability to pay.”
Colorado has suddenly become one of the few states in the nation doing exactly that. The state Department of Corrections (DOC) has agreed to treat all Colorado prisoners with hepatitis C with a course of curative drugs. It’s a five-figure cost per patient, but the department has the budget to do it.
That development, which took place this past summer, came after the Colorado Department of Health Care Policy and Financing (HCPF)—the agency that oversees Medicaid in the state—expanded its hepatitis C treatment policy in December 2017 to pay for attempting to cure all Medicaid clients testing positive for hepatitis C. Attorneys from the ACLU of Colorado had argued the state was violating federal law by treating only Medicaid clients with hepatitis C who had deteriorated to higher levels of liver damage.
Colorado has also extended the new class of hepatitis C drugs to nearly 200 people who have both that virus and HIV, under an innovative state drug assistance program that uses federal Ryan White Act funds and rebates from drug manufacturers.
HCPF said their change in treatment policy was a routine part of the process it uses to assess the efficacy, safety and cost effectiveness of newly available drugs. No matter the motivation, the results for patients have been substantial.
“Colorado is on the forefront for treatment access for people with hepatitis C,” said Nancy Steinfurth, executive director of the patient advocacy nonprofit Liver Health Connection. “We now have three large populations that have access to hepatitis C treatment, where most other states do not. So for people who are often disproportionately affected and not given access to great health care, it has changed, and I’m excited about that.”
Hepatitis C can be transmitted by drug paraphernalia sharing, sexual contact, medical accidents (such as needle sticks) and blood transfusions that took place before advances in blood supply testing. Some with the virus develop an acute infection that eventually resolves; others can be asymptomatic and unaware they have it for years. Eventually, most of those patients develop fatigue, aches and progressive liver damage.
Despite these recent policy changes, Colorado and other states still suffer from stark disparities in treating hepatitis C, the deadliest common infectious disease and a virus carried by an estimated 77,000 Coloradans.
Despite the advent of near-miraculous curative drugs five years ago that sharply altered the prognosis of the virus, the cure is still financially and logistically out of reach for many disproportionately impacted groups, according to a 2018 presentation by Corinna Dan, a policy advisor at the U.S. Department of Health and Human Services:
While the pricey, effective anti-virals like ledipasvir and sofosbuvir have started to make a dent in longer-term case rates in some states, new infections are increasing in other areas because of the rise in injection drug use. Needle-sharing is common among IV drug users, and health officials estimate 75 percent of long-term IV drug users have hepatitis C. From 2006 to 2012, acute hepatitis C infections more than quadrupled in the states hit hardest by the opioid epidemic: Kentucky, Tennessee, Virginia and West Virginia.
The next round of work in treating hepatitis C, and a growing caseload in hepatitis B as well, promises to be harder than the recent treatment gains. The HCPF and DOC decisions impacted thousands of Coloradans at once; further progress means legwork like visiting veterans’ meetings, talking with methadone patients, and working with refugee groups whose members might be afraid to seek health care.
“We’ve got a lot of populations we are trying to find, and provide that linkage to care,” Steinfurth said.
Before 2013, the primary treatment for hepatitis C was a series of painful interferon injections that worked to clear the virus only about 50 percent of the time. Pharmaceutical companies introduced the new drugs in 2013 and 2014, under the brand names Harvoni and Sovaldi, that involved three to six months of pills with far fewer side effects and a 90 to 100 percent cure rate.
The drug companies, though, initially charged $85,000 to $100,000 at retail for a course of treatment, saying they needed to recoup years of expensive research costs. They also argued the treatment was a better value than the high costs of untreated hepatitis C down the road.
Colorado Medicaid officials at first said the state would treat only clients with hepatitis C who were deemed to have the most advanced cases of liver damage. In 2013, an estimated 6,500 Medicaid members had a hepatitis C diagnosis, according to HCPF, which at that point projected it could cost more than $1 billion to treat every Medicaid client at the highest anti-viral drug prices. (At the time, the state’s entire contribution to Medicaid costs was $2.6 billion.)
By 2016, hepatitis C case tallies among Colorado Medicaid clients had more than doubled, to 14,451. HCPF attributes this to more Coloradans being covered under Medicaid expansion, increased testing for the virus and greater awareness of the new treatments. Simultaneously, however, prices for the drugs were dropping as more pharmaceutical companies released products in the same class of effective anti-virals. HCPF estimated total hepatitis C treatment costs among their clients at $24.1 million in fiscal year 2017-18, dropping to $19.9 million in 2018-19.
HCPF is now budgeting for about $47,000 per course of treatment, before rebates. A newer drug, Mavyret, is $26,400 for an eight-week treatment course. Rebates from the drug companies bring down Medicaid’s actual cost by just under 50 percent compared to retail, according to Cathy Traugott, clinical pharmacy manager for HCPF, and budgeting submitted to the state legislature.
HCPF officials have maintained it wasn’t only cost that drove their decisions on hepatitis C treatment. While the new drugs had passed clinical trials, states often wait for a longer track record to develop on long-term effectiveness, side effects and other criteria.
“Personally, I think we were always equitable,” said Traugott. “It’s a slow-growing disease, and some people clear it without needing treatment, so I think the way we handled it from the beginning was fair, in that we treated people who needed it right away.”
While HCPF was being pressured by the ACLU of Colorado, patient advocates and Denver Health, in September 2016 the department agreed to extend treatment to those with less serious liver damage diagnoses. The ACLU of Colorado said that wasn’t enough, and filed a federal class action lawsuit later that month. The state then announced in late 2017 that it was dropping all of the liver-damage prerequisites for treatment as part of its normal review of drug effectiveness and policy, and the ACLU of Colorado welcomed the change. Advocates have maintained all along that expanding treatment would save public budgets money in the long run by preventing the ravaging and expensive damage of late-stage hepatitis C.
Public health and finance officials around the nation have also debated how to handle treatment of re-infections, or patients who continue at-risk behaviors such as alcohol or drug use. Some systems required proof of successful substance-abuse treatment, for example.
Colorado says it is currently assessing re-infections on a “case-by-case basis.” The state does require clients who have substance problems to be enrolled in counseling or treatment at least one month before starting the hepatitis C drugs. That remaining restriction earned Colorado an “A-” instead of an “A” from the National Viral Hepatitis Roundtable, which prefers no barriers to treatment.
State Medicaid’s change in policy will help people like David Higginbotham, a Cañon City plumber who contracted hepatitis C while working years ago as a lab technician, and had previously been blocked from receiving state aid for the new drugs. Higginbotham is now finishing the medical workup he needs to start the anti-virals through Medicaid.
“I do feel like we’re getting there,” Higginbotham said about statewide treatment policies. “I’m sure this time next year, I’ll be doing a lot better. I think this is going to save a lot of lives.”
Colorado Medicaid’s decisions jump-started new treatment policies in the Colorado DOC. Prisoners across the country test positive for hepatitis C at high rates, with chronic disease estimated at up to 35 percent of prison populations. Colorado DOC estimates there are about 2,200 prisoners in its system with hepatitis C, out of about 20,000 inmates overall.
When the new anti-virals came out, and prices were up to $100,000 per course, DOC asked legislators for $2 million to begin treatment, said Kellie Wasko, deputy executive director and health authority for the department. It began by treating only those with the most significant liver scarring. Once it cleared those patients, it began treating the next most serious cases, but was turned down for additional funding.
Medicaid’s treatment expansion decision “told us we needed to treat everybody,” Wasko said, so she requested $20.5 million in each of two years “to effectively eradicate the hepatitis C virus within our population, and they approved that.”
The ACLU of Colorado filed a class action suit on behalf of prisoners, and the DOC settled the suit in September, though “we already had the funding approved,” Wasko noted. The settlement promised to treat everyone in the system that has a positive hepatitis C test, she said.
“It’s the right thing to do,” Wasko said. “The reality is that it’s a cure for a disease that has lifestyles associated with it that society doesn’t like to talk about. If we were talking about a cure for breast cancer, we wouldn’t be talking about it—we’d be figuring out a way to hand it out hand-over-fist.”
The ACLU of Colorado hailed the settlement as the first in the nation to guarantee treatment to all of a state’s prisoners, calling it a “just and humane result that will save dollars in the long run.” The settlement also dictates the state cannot require drug and alcohol treatment before an imprisoned patient gets hepatitis C drugs, nor can it withhold treatment as a disciplinary action. DOC’s lack of mandating enrollment in substance abuse treatment for applicable patients is notably less stringent than the Medicaid policy; a HCPF spokesperson declined to comment on the DOC policy or this difference, saying only that the Medicaid policy “is a mechanism for trying to ensure members will be successful in their treatment.”
Wasko said 206 Colorado prisoners were receiving treatment at the end of September, and it has been 100 percent effective at eradicating the virus among prisoners since 2014. The $20.5 million budgeted for this year compares to a total DOC health care budget of $99 million. (Federal prisons recently lowered their threshold for treating prisoners with hepatitis C with anti-viral drugs, but still prioritize those with more severe liver damage. According to a spokesperson, the Federal Bureau of Prisons spent $25 million in fiscal year 2018 treating hepatitis C nationwide–not far off DOC spending in the much smaller Colorado state prison system.)
“This is a really good investment for two years, that will have a very healthy outcome,” Wasko said, adding that DOC will re-treat those who reacquire the infection: “People smoke and go to emergency rooms for pneumonia, knowing they will smoke again. We don’t turn them away the next time they come back with pneumonia.”
The public policy decisions on hepatitis C have been eased somewhat by the steady drop in the once-shocking price of the anti-viral cures. Three pharmaceutical companies have now released versions of the antivirals, and one has just approved a generic that could cut the wholesale cost to $14,000.
Steinfurth has been critical of Big Pharma’s initial pricing of the drugs, though her liver health group receives pharmaceutical funding to support patient advocacy. She said she fears for patients with other rare diseases who may see treatment price tags of $1 million. But in the case of hepatitis C, she said, “We were the beneficiary of all this competition going on.”
Olson said she will continue to fight for her son’s health care access while he is involved with the corrections system, but she is also motivated to help thousands of other inmates who go unheard.
“I’m not asking people to treat these guys like kings, but they are human,” Olson said. “When I was asking about hepatitis C, it wasn’t just for my son. It was for all of the prisoners who are denied this treatment.”
Editor’s note: Michael Booth first wrote about hepatitis C and treatment policies in February 2017.