The True Meaning of a Cure

BY DAVY JAMES, MANAGING EDITOR
New hepatitis C drugs moved the dream of a cure into a reality that gives patients a new chance at life.
PUBLISHED WEDNESDAY, JUNE 10, 2015
“It’s not so much the fear of dying, it’s the fear of suffering.”

Alan Franciscus was terrified, he recalled, as he retraced the winding path that took him from a frightened patient suffering the effects of the hepatitis C virus (HCV) to a cured advocate guiding those now walking the same path he traversed years ago.

“I thought, ‘If I’m this tired and achy now, with my brain this foggy, what is it going to be like in five years or 10 years? Am I going to be able to take care of myself, be with my friends and family?’ You get very negative, and everything turns dark and depressing. It’s awful,” Franciscus said.

Following his HCV diagnosis in 1996, Franciscus endured years of treatments that caused debilitating side effects. Prior to the flood of groundbreaking HCV treatments that began to emerge in 2012 with high cure rates, limited side effects, and shorter treatment durations, patients like Franciscus faced a veritable gauntlet of pain and suffering from HCV drugs. Cure rates with the older drugs hovered around only 40 to 50 percent.

Tired of Being Tired

During the late 1980s and early 1990s, Franciscus had begun to think the symptoms he was experiencing were all in his head. His doctor couldn’t find any reason for his overwhelming exhaustion. The fatigue was the hardest part, Franciscus noted, sometimes preventing him from simply getting out of bed or taking a walk around the block of his home in San Francisco, California.

“Fatigue can ruin your life,” Franciscus said. “It’s a symptom that’s really hard to measure. You just get so bone-tired that you don’t want to do anything.”

After visiting a new doctor, Franciscus finally received an answer to the question of the cause for his suffering. It was an answer he knew nothing about, having never even heard of HCV. He wasn’t even sure how exactly he contracted the virus.

“I had about nine of the 10 risk factors, from surgeries to drugs to tattoos. I’ve had just about every type of risk factor you could have,” he said. “I ran the whole gamut. I was a walking risk factor.”

Without the benefit of the Internet, Franciscus got to work researching HCV at the library.

“I was living in San Francisco and knew something about HIV, so when I got a viral load of 50 million back, I knew how that load translated to disease progression and I thought, ‘Oh my God, I’m going to die any day now,’” he recalled. “It was really frightening to me. There was no information out there, so by that time, everyone was fearful of hepatitis C.”

A Curse Turned into a Blessing

Just one year after his diagnosis, Franciscus founded the Hepatitis C Support Project (HCSP) to provide needed resources for people suffering from HCV, hepatitis B, and HIV and hepatitis co-infections.

“Providers either didn’t know anything or were giving out wrong information,” he said. “I had come to realize that hepatitis C wasn’t a death sentence, but I was hearing from patients who were being told that they didn’t have to worry about it so don’t come back, or they were being told it was a death sentence. So that really made me want to do something to help people.”

After being profiled in an article in the San Francisco Chronicle, Franciscus began getting phone calls and letters from fellow patients around the country seeking answers. The HSCP would grow to offer support services and vital information through its HCV Advocate newsletter and web site (www.hcvadvocate.org).

“My work really gave me a new life. Prior to being diagnosed, I was an accountant and I hated my job,” Franciscus said. “Now I work in hepatitis C full time. It’s given me so much that I am grateful for. I found my passion and made some terrific friends. So it’s really enriched my life in many ways.”

Fellow HCV patient Leslie O’Hara, whom Franciscus met while working with the foundation, spoke of experiences that closely mirrored his own.

“Because of my past, I thought I probably had hepatitis C. So when I got tested in 1999, it wasn’t unexpected that I tested positive,” O’Hara said. “I didn’t really do anything about it because I was still just not ready to deal with it.”

Much like Franciscus, O’Hara was prompted by her fight with HCV to help others. She currently works as a prevention specialist at the Venice Family Clinic in Venice, California. Like Franciscus, O’Hara faced the same feelings of hopelessness after her diagnosis as she battled the effects of the disease.

“There was really nothing you could do,” she said. “You just try to stay as healthy as you can, no drinking or drugs, of course. Live right, eat right.”

When the Treatment Is Worse than the Disease

When patients like Franciscus and O’Hara began receiving treatment for HCV, the mental and physical toll from the standard drugs of the time served to exacerbate their already diminished well-being. Shortly after he was diagnosed, Franciscus began using non-pegylated interferon monotherapy, three injections per week for one year, a treatment from which he never achieved a sustained virologic response (SVR).

Recommended Articles
Study finds a common assortment of reasons for non-initiation of HCV therapy, regardless of patient race or ethnicity.
Managing the risk of hepatitis C and liver disease among infants born to mothers with chronic HCV is a challenge.
HCV patients with cirrhosis and severe sepsis face elevated risk of organ failure.
Anti-retroviral drug therapy may effectively treat hepatitis C-HIV coinfection.
$auto_registration$