Our months-long series about hepatitis C, "At the Crossroads: The Rise of Hepatitis C and the Fight to Stop It," has officially come to an end. We had a great public forum ("Hepatitis C: Cost, Cure, and Challenge") last night at Brown University, the audio from which is posted here, and some key takeaways from which I'll share, below.Archive audio of the HepC Forum Broadcast (01/15/2015)
The stories continue
But first: the series may be over, but the stories of patients living with this chronic disease, the stories of people in the depths of addiction, putting themselves at risk of catching hepatitis C any time they share a needle or drug paraphernalia, the stories of doctors and nurses and public health workers and researchers on the front lines and in the trenches, fighting this disease, all those stories continue. And I'll keep you posted.
In the next few months, I anticipate we'll be hearing about more new, breakthrough drugs for hepatitis C. But I am not so sure we'll be hearing about the prices of those drugs coming down. Drug makers like Gilead and AbbVie are striking deals with insurers and pharmacy benefit managers to offer their drugs exclusively, but no one will say publicly what kind of discount they've gotten, so we don't know if this deal-making is actually leading to lower prices for patients. On a brighter note, drug makers have been providing some medication free of charge to low income patients.
If you missed the forum last night, here are a few points that struck me, thanks to our incredible line up of guests:
- RI Dept. of Health chief Michael Fine, MD helped introduce the event, along with Brown School of Public Health dean Fox Wetle. So honored to have them.
- Most people get exposed to hepatitis C by sharing needles and other paraphernalia, often in the depths of an addiction to opioids like heroin. Withdrawal from those drugs brings on the worst flu-like symptoms imaginable. And that's what the old treatment for hep c, a drug called interferon, caused. So, going on interferon could be a trigger for recovering addicts, causing some to avoid treatment. That's another reason why new drugs for hepatitis C are such breakthroughs - they offer a cure, plus they don't threaten a person's recovery. (Thanks to Jonathan Goyer for sharing his amazing personal story about this last night).
- Hepatitis C is the HIV of this generation, only bigger, according to panelist Amy Nunn, Sc.D, of the Rhode Island Public Health Institute. It's going to take advocacy, legislation, and cooperation among health care providers, industry, public health, and government to get better pricing on expensive new hepatitis C drugs.
- People are dying from this disease right now: baby boomers, mostly. Panelist and founder of RI Defeats Hep C Lynn Taylor, MD said too many of her patients aren't able to get new drugs that can cure their hepatitis C because they're not sick enough, yet - and insurers are requiring that patients have a certain stage of liver disease before they're eligible for coverage. Meanwhile, their disease progresses and causes suffering.
- Panelist and physician for the Dept. of Corrections Michael Poshkus, MD said nearly 30 percent of inmates in Rhode Island's criminal justice system have hepatitis C. That presents an opportunity to tackle a big part of the hepatitis C epidemic, which inmates receive medical care behind bars. The trouble is the cost.
- Deaths from hepatitis C have likely been severely underreported, according to panelist and Tufts epidemiologist Thomas Stopka, PhD. He has mapped hep C death hotspots in Massachusetts.
- Panelist and liver specialist Tom Sepe, MD told the audience he could be treating dozens more patients if he and his staff didn't have to spend so much time filling out paperwork to try to get patients the expensive new drugs. But he says the new drugs are so easy to use, doctors who aren't liver specialists will be able to treat hepatitis C patients more easily going forward.
- During the Q&A session after the live broadcast, there was some energetic back and forth between state Sen. Josh Miller, who is very active in health care issues on Smith Hill, and the panelists. Panelists want the General Assembly to do more to bring down the cost of new drugs and bring more transparency to pricing deals. Sen. Miller said he's already pushed through legislation to make some health care pricing more transparent. Lots of talk about the burden of caring for hepatitis C patients on Medicaid. And Miller said we need to raise awareness of these issues among lawmakers.
If you attended, watched, or listened to last night's forum and would like to highlight some other points, please comment!
And if you'd like to catch up on the series "At the Crossroads," you can find everything at ripr.org/hepc.
A big thank you to the California Endowment for Health Journalism, a program of the USC Annenberg School for Communication and Journalism, for supporting this work.