PROVIDENCE – For an hour on live radio, a panel of experts politely shared their anger and outrage about the Hepatitis C epidemic in Rhode Island, their cogent words spoken mostly in the even-keel, modulated tones appropriate for an NPR public forum, before a sparse audience of about 70, who applauded on cue, following each 18-minute segment.

The organized discussion, held on Jan. 15, “Hepatitis C: Cure, Cost and Challenge,” capped a month-long series by Rhode Island Public Radio, coordinated by Kristin Gourlay, the station’s health care reporter. The public forum was the capstone marking the end of the series, “At the Crossroads: The Rise of Hepatitis C and the Fight to Stop It.”

Yet, it was only after the live radio session concluded, when the audience joined in the conversation, that the seething anger and frustration, seemingly held in check by the format, boiled over.

The anger even caught Sen. Joshua Miller, the only legislator who attended the forum, by surprise, when it was misdirected at him, because of the decision by state officials to ration care as the result of the high cost of new drugs to treat and cure the disease, allowing only the sickest to receive care.

More than a live radio show to boost awareness about the disease, it became clear that political activism organized in a new social movement was needed to change the playing field on Hepatitis C.

On air
With Gourlay serving as moderator, probing questions were asked of an inclusive panel of experts.

The conversation took place within the academic, antiseptic confines of Friedman Auditorium in the Metcalf Research Complex at Brown University. It was a setting removed from where the actual courageous battle against Hep C is being fought, without media scrutiny or awareness.

Still, the discussion attempted to bring to life the stories of “doctors and nurses and public health workers and researchers on the front lines and in the trenches, fighting this disease,” as Gourlay described it.

The participants included:
• Jonathan Goyer, a young man in recovery, whose story is one of those featured in the new media campaign, “Addiction is a disease. Recovery is possible.” [See link to ConvergenceRI story below.]

• Dr. Thomas Sepe, director of the Liver Center at University Gastroenterology, who said he and his staff spend 15-to-20 hours a week fighting through red tape, trying to get prior authorization from insurers for his patients to gain access to the new drugs that can cure Hep C.

• Dr. Lynn Taylor is leading the effort, Rhode Island Defeats Hep C, to make Rhode Island the first state to eliminate the viral disease. [See link to ConvergenceRI story below.]

• Thomas Stopka, assistant professor of Public Health and Community Medicine at the Tufts University School of Medicine, who said that the incidence of Hep C is severely underreported, and, in response, has mapped out in Massachusetts the hot spots where Hep C is concentrated.

• Dr. Michael Poshkus, who works at Thundermist Health Center and in the state’s prison system, and who said that 30 percent of the Rhode Island prison population has Hep C.

• Amy Nunn, the executive director of the R.I. Public Health Institute and an assistant professor of Public Health Brown University, who challenged the way that the drugs to cure Hep C were being priced by the companies, noting that the VA was getting a 40 percent discount. Why wasn’t that same discount available to everyone, she wondered out loud.

What happens to a cure deferred?
There is so much to be angry about: the hepatitis C virus afflicts about 3.5 million nationally, with about 17,000 infected here in Rhode Island.

Most don’t know that they’re sick, until the disease ravages their liver, causing cirrhosis and liver cancer. Two-thirds of those infected will develop chronic liver disease.

The number of cases is expected to triple in the next eight years, according to Dr. Michael Fine, the director of the R.I. Department of Health.

The number of deaths caused by Hep C now exceeds the number of deaths from HIV in Rhode Island, according to Fine. It is very much a disease of Baby Boomers, according to advocates.

There is a cure for the disease, a series of new drugs introduced this year, including Harvoni and Solvadi that cost between $80,000 and $95,000 for 12-week regimen. It has become a budget-buster for Medicaid and for health insurers, so the response has been to ration care. A more effective approach might be for the state to leverage its market power to negotiate discounts that match the VA's 40 percent discount

As a result, doctors and nurses and advocates now spend as much as 20 hours a week negotiating with health insurers, attempting to pry out the prior authorization needed to obtain the drugs for patients. There are not that  many happy endings. 

The actual cost of manufacturing the drug is low, but the high cost is attributed to the need of the pharmaceutical companies to support new research and, as critics charge, increase their profit margins.

The Veterans Administration has been able to obtain a 40 percent discount.

Rival national pharmacy benefits managers – Express Scripts and CVS Health – recently cut deals with the competing drug firms to be able to offer some degree of discounts to their customers – but exactly what those savings are have not been made public or transparent.

Much of the financial burden now falls upon Medicaid, already targeted by budget cutters in the R.I. General Assembly. Gov. Gina Raimondo has made controlling Medicaid costs one of her top agenda items.

To do so, Raimondo will need to control the escalating costs of drugs not just for Hepatitis C, but leukemia [about $92,000 a year], lung cancer [about $80,000 a year], colon cancer [about $105,800 a year], and rheumatoid arthritis [about $48,000].

Without legislated transparency, the drug companies will continue to reap profits, the insurance companies will resist paying for the treatment, and people will continue to suffer and die needlessly, often because of the stigma of the disease, which is often transmitted through shared needles from drug users.

Even at the highest retail cost of the current drug treatment, at $92,000, it could be considered a bargain, because it is a cure, when compared with the larger costs down the road for liver cancer and liver transplants, with the chronic need for expensive medication after the surgery.

Medicaid covers many of those liver transplants performed in Rhode Island, according to Sepe. [The reality is that many people in the Northeast who are the waiting list for a liver transplant will die before getting a transplant].

As Nunn said during the on-air program, you can pay now – or you can pay much more later.

Nunn noted that Medicare cannot negotiate drug prices, so patients over 65 will have to pay the full fare, courtesy of the taxpayers.

The current cost of care is calculated to be $30 billion nationally; it will grow to be about $85 billion in the next two decades, according to Fine.

The alternative treatment to the new drugs, involving Interferon, does not work very well with those men and women in recovery, but the side effects mirror what happens when someone goes through drug withdrawal, according to Goyer. In other words, prescribing Interferon is likely to trigger a relapse because of the side effects.

Because of his former status as IV drug user, despite the fact that he is in recovery and holding down two jobs, Goyer has not been able to be approved for the new drug treatment for Hep C, in part because he has not been deemed to be sick enough.

Moving forward
There are some clear parallels to the political efforts to make treatment, screening and prevention for HIV/AIDS, often pushed by groups such as Act Up.

There are natural alliances that can be built with the recovery movement in Rhode Island, which is only just beginning to flex its political muscle, having staged a die-in on the State House steps on the day of Raimondo’s inauguration. [See link to ConvergenceRI story below.]

Amy Nunn, one of the panelists, called for the creation of a new social movement, and to create federal support for treatment, prevention and screening, similar to what the Ryan White Act had done for HIV/AIDS.

In a conversation with Miller that followed the event, as the crew broke down the radio gear, Nunn urged Miller to invite her to the State House, saying she would talk to anyone.

Miller pondered her offer, wondering out loud how much good it would do, because “the dollar sign” tended to trump everything on Smith Hill.

Here’s a suggestion: Hold a Hep C screening at the State House for elected officials. Invite Raimondo and her staff to participate. Have the R.I. Department of Health conduct the screening. Of course, the results would be confidential.

Imagine: what if R.I. House Speaker were to test positive for Hep C, a disease most Rhode Islanders don’t know they are infected with. Would he be able to secure prior authorization from his health insurer for treatment for the new drug? On the face of it, he would probably be denied, because he’s not sick enough.

Dynamic scoring would take on a whole new meaning when applied to Hep C.