When a celebrity dies, immediately there’s talk about the cause of death. But talk doesn’t mean we get the full story—at least not right away.
When legendary rock musician Lou Reed died this past October, many media outlets initially reported that he died of complications of a liver transplant and liver disease at age 71. Later, we learned the truth.
He had died of the long-term consequences of the hepatitis C virus (HCV).
As a Lou Reed fan and the executive director of the Einstein Division of Substance Abuse, which oversees treatment for opiate addiction, I was not surprised by the delayed disclosure, but I was disappointed.
As I followed the news closely, I kept wondering why most media outlets failed to make the connection publicly between chronic liver failure and HCV.
- Was it that hepatitis C is frequently associated with injection-drug use and they didn’t want to tarnish his memory?
- Was it that mentioning hepatitis would lead to a discussion of the disease that would be medically complicated?
- Was it that the infection was so long removed from his death (probably 30 to 40 years) that it didn’t seem relevant?
The initial silence was particularly striking because of the sheer number of people infected with HCV in the U.S. The Centers for Disease Control estimate that 2.7 to 3.9 million people are infected and more than 15,000 people die each year as a result of HCV-related illnesses.
Over the past few years, physicians at our treatment center have seen an uptick in deaths from end-stage liver disease, a result of chronic HCV infection.
Despite lives lost and families torn apart, there’s no outrage. There seems to be little awareness of this problem in the general population. But there are programs to increase awareness of HCV, and we run one of them.
The program involves peer educators who’ve successfully completed a treatment protocol and now counsel others. These patients, now educators, call themselves “The Liverators.”
In 2012, documentary filmmaker Laura Naylor heard about the peer program and approached us to discuss shooting a documentary about the peers and their journey through treatment. What she created is a powerhouse.
Her film puts HCV into sharp focus and thoughtfully raises awareness about treatment. The Fix tells the story of former patients who are using their experiences to bring HCV infection out of the shadows. Their goal as peer educators is to encourage others to get tested for HCV and consider treatment options.
Most of our patients receive medication (methadone or buprenorphine) to support their recovery, and many have a history of injection-drug use. As this clip from The Fix shows, the peer educators speak movingly about the challenges of recovery from drug abuse and the difficulties they face in rebuilding their personal lives.
The Fix helps tell that story, and was invited to be screened at the SoHo International Film Festival. The tickets to the May 19 premiere sold out quickly, and the film was granted a second showing on the closing night of the festival on Wednesday, May 21.
I’m excited about the film, not just because of our role in it but because it is an opportune time for its debut due to sofosbuvir and simeprevir, new medications recently approved by the Food and Drug Administration to treat HCV, and the increased attention these treatments have brought to the subject.
Our staff, under the leadership of Alain Litwin, M.D. and Irene Soloway, P.A., developed this innovative group-treatment model that has successfully treated HCV. With funding from the New York State Department of Health AIDS Institute, we have cured many patients. Dr. Litwin is a professor of medicine and of psychiatry and behavioral sciences at Einstein and an internist and addiction medicine physician at Montefiore Medical Center, the University Hospital and academic medical center for Einstein. Irene Soloway is a physician assistant in the Division of Substance Abuse.
Until recently, treatment for HCV was difficult. Patients had to have the courage and determination to get liver biopsies. If they were eligible for treatment, they endured medications with extremely unpleasant side effects, including nausea, vomiting and other flu-like symptoms. After all that, there was no guarantee that the treatment would be successful.
The new regimen involves taking only a few pills a day for a period as short as 12 weeks, with few side effects and high rates of successful outcome. The high cost of treatment (which can exceed $100,000 per patient) remains controversial, but in many cases insurance covers the cost. By the end of 2014, we expect treatment to be one pill per day.
With effective treatment now available and the stigma slowly lifting, people have every reason to get educated, get tested and, if necessary, get treated.