Recovery Month 2013: Sharing Stories From People in Recovery and Coping with Hepatitis C

September 11, 2013

Maureen Fitzgerald
Editor, ATTC Network Coordinating Office and NIATx



“There is no greater agony than bearing an untold story inside you.”

Maya Angelou

Personal stories of recovery have the power to transform lives. Reading stories of others can help you learn about yourself—and sometimes, reading someone else’s story can help you share your own.

Since 2008, the ATTC Network has sponsored the In My Own Words Essay Contest to celebrate National Recovery Month. The essay contests have invited recovery essays from a variety of groups: addictions treatment and recovery services professionals, high school and college students, affected family members, people supported by medication-assisted treatment, and active service members and veterans in recovery.

The 2013 In My Own Words essay contest, sponsored in partnership with Faces & Voices of Recovery, The Hepatitis C Association, Help4Hep, and Harm Reduction Coalition, is calling for essays from people in recovery from substance abuse and or a mental health disorder who are also coping with hepatitis C.

Common misconceptions

Sue Simon, President of the Hepatitis C Association, was diagnosed with the virus in the early 1990s. Sharing her story, says Simon, is one positive way to manage a chronic illness. “It helps me to know that my story might help someone else,” she says.

The Hepatitis C Association works to change misconceptions about the virus. Among them is the belief that it is solely the result of IV drug use. “It’s important for people to know that hepatitis C is a blood-borne pathogen,” says Simon. “A person is at risk for the virus whenever blood is exchanged.”

Another misconception is that hepatitis C cannot be cured. But just as with substance use and mental health disorders, treatment is effective and recovery is possible. Similarly, emerging medications are helping people who have relapsed or not responded to treatment in the past. “More and more patients are getting cured with easier and shorter treatments,” says Simon. “In fact, hepatitis C is the first chronic virus that is actually being cured by drugs,” she adds.

When Simon was first diagnosed, the cure rate with 48 weeks of Interferon (the only drug available at the time) was just 10%. “With the addition of other drugs, the treatment time remained at 48 weeks, but the cure rate increased to 50%,” says Simon. “Today, new drugs in trial are improving the cure rate to between 90 and 100%.” 

Having recently completed a trial herself, Simon now has no evidence of the virus. “I’m in my late 60’s and it looks like I’m cured,” she says.

A silent disease

The Center for Disease Control recommends that anyone born from 1945 through 1965 get tested for Hepatitis C.

“As many as 800 thousand baby boomers in the United States may be infected with Hepatitis C, yet unaware of it,” says Simon. “This is partly because it’s a silent disease with no symptoms in the first couple of decades. One-third of patients with hepatitis C don’t even have elevated liver enzymes, making it difficult for doctors to recognize the need to test,” says Simon.

The only way to know for sure is to request a hepatitis C antibody test. The state of New York is working on legislation requiring medical providers to offer a hepatitis C test to anyone born between 1945 and 1965. Other states are expected to follow suit. However, the best way to make sure you are tested is to talk directly with your doctor and ask for a test.

“It’s always good to know your status,” says Simon, adding that people who test positive can make lifestyle changes and benefit from treatment that will reduce their chances of liver cancer, cirrhosis, or a liver transplant.

Reducing stigma

Through the In My Own Words Essay Contest, people in recovery who are also managing hepatitis C can reduce stigma and change attitudes about these chronic conditions—and maybe encourage others to seek treatment or testing. The top 20 submissions will be included in a compilation, and prizes will be awarded to the first-, second-, and third-place essays.

Adds Simon, “The essay contest is a great opportunity for people to experience the relief that comes from sharing their stories and helping someone else.”