Journalist turns six months of research into eight-part series on hepatitis C epidemic Date: 05/21/15
Kristin Espeland Gourlay
By Kristin Espeland Gourlay
Toward the end of 2013 and into 2014, I was knee-deep in reporting and writing about opioid addiction and the many Rhode Islanders who had overdosed. In the course of my reporting for the radio documentary “Killer Drugs,” I was struck by how many young people were turning for the first time to injecting drugs such as heroin.
Many of the doctors I spoke to told me they were concerned not only about the epidemic of addiction and overdose, but of hepatitis C, an incredibly infectious blood-borne virus that attacks the liver. That’s my next story, I thought. As I started digging in, I realized there was much more going on than a rising rate of new infections.
In fact, 2014 was a turning point for people living with chronic hepatitis C. For the first time since the discovery of the virus in 1989, there was a reliable cure. New drugs had hit the market with reported cure rates of 95 percent or more. Until recently, patients with hepatitis C had few treatment options, the most common one was curing less than half of patients and it had debilitating side effects.
The trouble with these new drugs is that they cost upwards of $90,000 for a full course, so expensive many patients can’t afford them. But waiting – and many people have already waited decades for a cure – can have serious consequences. Hepatitis C is one of the leading causes of liver cancer, cirrhosis and other unpleasant symptoms arising from a badly scarred liver.
The arrival of these new drugs for hepatitis C coincides with another trend: millions of baby boomers who contracted the disease decades ago are just now showing up in doctors’ offices and emergency rooms, sick with something most didn’t know they had. Add to that a wave of new infections, spreading among younger injection drug users – people who got hooked on opioids and then turned to heroin – and you’ve got a unique moment in the history of an epidemic.
I became fascinated with the idea that so many factors surrounding an epidemic were coming to a head, right now. And I wanted to draw attention to the fact that hepatitis C affects nearly 5 million Americans, although funding to prevent and treat it pales in comparison to funding for other diseases.
My editor gave me the go ahead when I presented the mounting evidence that this epidemic would impact many lives but also state budgets. Scoring a National Health Journalism Fellowship from USC’s Annenberg School for Communication and Journalism helped too!
My project, “At the Crossroads: The Rise of Hepatitis C and the Fight to Stop It,” took shape as a series of eight radio stories accompanied by online spreads with infographics and photos, and culminating in a public forum broadcast live from Brown University’s School ofPublic Health. I spent months pre-interviewing sources and researching, then spent several more months taping interviews, writing, editing, and producing – all told about six months.
Then I examined the old (“As Old Hepatitis C Treatment Fades Out, New Treatments Stoke Hope”) and new treatments for the disease, but focused on the high cost of new medications and how insurers and public payers are grappling with them (“New Hep C Drugs Promise a Cure, for a Big Price”).
I tried to move the discussion away from how expensive the new drugs are toward whether or not they’re cost effective. I’d seen lots of coverage of those high prices in the media, but I found nothing that put those prices in context. I even delved into the scariest of all subjects for me, math, with a piece called “The Uncomfortable Math of Hep C Treatment,” for which I roped in a friendly co-worker and a patient health care economist. And finally, I focused on three populations hardest hit by hepatitis C: veterans, inmates, and people who use injection drugs.
My sources included doctors, policymakers, and public officials. I relied heavily on epidemiologists and infectious disease specialists, as well as on organizations that advocate for people in the criminal justice system and for people in recovery from addiction. But I tried to anchor most pieces with a patient’s story. It was challenging to find patients willing to share their stories. Because of who is affected and how the disease is contracted – usually through injection drug use – hepatitis C is not easy for sources to discuss. My editor and I decided to offer anonymity because of the stigma that still surrounds this disease.
So far I’ve received some positive reactions to the series. One listener emailed to tell me it helped her feel less alone. For me, that’s one of the best possible outcomes.
The state health department spontaneously pledged more funding for hepatitis C education and prevention, after some public health officials attended my public forum. That’s another great outcome.
Resources for reporters
If you’re interested in covering hepatitis C and related subjects, here are some tips and lessons learned:
Find out if your state has a viral hepatitis prevention and treatment strategy or action plan. Compare it to what the federal Centers for Disease Control and Prevention recommends. Find out how the funding compares to other programs.
Ask your state’s Medicaid agency for hepatitis C statistics about how many people carry the diagnosis. And ask for their policy on covering the new drugs. What kinds of restrictions are on your state’s list?
Find as many patients as possible who will tell you their stories. Good resources are addiction recovery programs, HIV/AIDS outreach programs and infectious disease doctors.
Befriend epidemiologists and health care economists.
Some possible future stories might be:
The effect of drug competition on prices for patients and insurance coverage policies
Impact on Medicare, since most people with hepatitis C are baby boomers
New data will emerge in the next few years about the link between recent initiates into injection drug use and new infections; what stories do these data tell?
Why has it been so difficult to develop a vaccine for hepatitis C, especially when we have vaccines for hepatitis A and B?