Shining Light into the Darkness
Advocacy group staffed by hepatitis C patients helps others find hope in fight against the disease.
For the thousands of patients already diagnosed with the hepatitis C virus (HCV), there are millions more estimated to be unknowingly infected with the disease.
Seventy-year-old Susan Simon, founder of the Hepatitis C Association, was once among the hordes of patients unaware that she was infected with this insidious virus. As a longtime sufferer of the contagious inflammatory liver disease, Simon will admit that ignorance wasn’t bliss. Her symptoms initially surfaced in the mid-1980s, when, as a first-grade teacher, she struggled to oversee her lively students every weekday morning.
“I didn’t have the stamina,” Simon admits. “I was fatigued more than my colleagues. After school, they would get together and go shopping and to dinner or out to a movie. I never wanted to do that.”
As the disease gradually took a firmer grip, Simon’s best days were often spent with her feet comfortably propped up. Still, it wasn’t until the 1990s that an enlarged liver finally helped doctors to zero in on the source of her mysterious health issues.
“[The doctor] said ‘There’s a new test that just came out,’” she recalled. “He knew it was a blood-borne virus.”
Within a few short weeks, Simon’s physician, with results in hand, calmly broke the news.
“I was really scared to have a disease no one knew anything about,” she said.
Nine months would pass before Simon followed up on the doctor’s recommendation to see a gastroenterologist. By then, a biopsy revealed she had developed cirrhosis, a stage-four liver disease. Cirrhosis is a slowly progressing condition in which the body replaces healthy liver tissue with scar tissue. By some stroke of luck, and a healthy lifestyle, Simon was able to avoid a liver transplant.
“All they had to offer was this very unpleasant interferon treatment,” she said. “I had to give myself an injection three times a week. The side effects were even worse than the disease: fatigue, headache, loss of stamina, and muscle and joint pain.”
On top of the debilitating side effects, only a small fraction of patients who received this treatment saw improvements. Decades would pass and modest improvements in treatment would come and go, each proving to be a bigger disappointment than the last for Simon. Finally, in 2012, a number of all oral, promising hepatitis C drugs with high cure rates and limited side effects began to emerge. Simon was prompted to join a clinical trial for one of these treatments by Gary Good, MD, a leading infectious disease expert based in Monticello, New York. Simon was enrolled into a trial for Viekira Pak, which would eradicate her virus altogether.
“Physically, I felt better, but it takes time,” she said. “So I feel even better today than when I ended the treatment. Emotionally, it was a surreal feeling.”
Other new antiviral drugs like Sovaldi and Harvoni have also made measurable headway in eradicating HCV in patients.
“This is the first time we’ve seen any virus cured by drugs, and we were very excited by that,” Simon said.
Dr. Good said the results from treatment with Viekira Pak have been extremely promising to date.
“This response rate is very gratifying,” he glowingly added.
Even so, with the cost of treatments like Sovaldi coming in at $1,000 per pill, physicians are encountering significant roadblocks.
“They are so expensive that the number of treatments is being cut short,” Dr. Good noted. “Yes, it does take a lot of research to get a drug to the market. It’s not a drug used by millions of people. So the cost for development has to be recouped for a smaller pool of patients and over a smaller period of time.”
While logistics can put the matter into perspective, the 8,000 to 10,000 fatalities caused by the virus each year should be more than enough incentive to cut through all the red tape, according to Dr. Good.
“We thought this would allow us to treat more patients, but what’s consuming so much of our time now is fighting the insurance companies,” Dr. Good said. “If we had any other disease, we would not tell patients, ‘You have to get sicker before we can start treating you.’”
HCV can only spread through blood-to-blood contact, so infections typically pass from one person to the next in a limited number of ways. The most current data identify transplants, blood transfusions, and sexual encounters as the primary culprits. However, the lion’s share of blame for infections presently goes to intravenous drug use, from which a projected 60 percent of all diagnosed cases are attributed.
While she’ll never be able to say for certain, Simon believes she can trace her exact point of transmission right down to the very hour when she received a blood transfusion. The year was 1966 and the world was a limitless place for the new graduate of Kean University in Union, New Jersey. It was July, and Simon’s husband was driving her to an in-state camp for a summer job.
“Our little sports car was hit by a Cadillac head-on,” she said. “I was not wearing a seatbelt.”
Even to this day, Simon is haunted by the excruciating injuries she sustained during that fateful crash. Her femur was broken in multiple places, which led to a visit to the surgeon’s table, where an extraordinary amount of blood was lost.
“I needed a transfusion,” Simon concluded. “The blood was contaminated with hepatitis, or at least that’s what we think happened.”
For years, the virus was spread in this fashion, as it took the medical community another 26 years to introduce a viable test for distinguishing hepatitis-tainted blood supplies. In fact, testing for carriers only made its debut in 1989, a time when physicians were still referring to the virus as “non-A” and “non-B,” noted Simon.
A Resource Desert
Early on, Simon discovered that educational resources for HCV were sparse at best and support networks were even harder to find.
“I got online and started researching the disease and meeting other people,” Simon said. “I found this message board, and because I had [HCV] for such a long time and I was still alive and kicking, it gave people a lot of hope.”
In her Internet searches, Simon came across a liver foundation, an organization supporting the broader spectrum of hepatitis patients and a few smaller grassroots HCV groups.
“I started thinking about starting my own organization in 1999,” she said. “In 2000, we incorporated and got nonprofit status.”
Between 2004 and 2009, the association’s instructor-led programs reached some 3,600 clinicians in 203 substance-abuse treatment clinics across 38 states. These programs were funded by a grant from the Substance Abuse and Mental Health Services Administration, along with the Center for Substance Abuse Treatment.In that same vein, Simon’s staff held more than 450 presentations for approximately 6,400 patients from 2008 through 2014.
“This program was and continues to be funded by multiple pharmaceutical companies,” Simon’s husband Dennis verified.
After some time, it became apparent to Simon that the emergent need for “talk therapy” was prevalent around the country. In collaboration with several other entities, including a program supporting HIV patients, one-third of whom are dually diagnosed with HCV, the Hepatitis C Association became the managing partner of the Help-4-Hep hotline. Today, this toll-free, nonprofit peer resource and support line empowers the public with information, while giving callers access to low-cost HCV testing and one-on-one counseling.
“They all work off of the same database and have access to the same information,” Simon said of remote counselors. “They can help you in New Jersey or if you’re calling from San Francisco. The unique part is that we meet them wherever they are at in their journey.”
Judy Dufour, 71, of Lake Worth, Florida, was one of the peer counselors on these phone lines.
“I was probably diagnosed in ’92 or ’93,” the former Brooklynite said. “I was a bit of a wild child, but I had also been at the dentist office half my young life and no one used disposable needles at the time. It could have been a lot of things.”
After a series of physically debilitating bouts with the virus, Dufour began perusing the web for more information around 2000.
“I was looking for some support, some knowledge,” she admits. “I had Googled some things, and I didn’t feel like they were in-depth enough. Some were just offering snake oil and others were too scary.”
Dufour describes this period of her life as a “black time.”
“First of all, I had to stop working at an age I never thought I would have to,” she said. “You kind of lose yourself.”
It wasn’t until she began her work with the Hepatitis C Association that a light appeared at the end of the tunnel.
“Being able to do something and have interaction with people, even if it was only through a website—it made me feel good,” she said. “A couple of times, I felt like I even saved people’s lives.”
Today, Dufour’s shift at Help4Hep might involve keeping someone on the phone until help arrives, directing them to the nearest hospital or even just lending a proverbial shoulder to cry on.
“There is no one kind of person,” Dufour said of callers. “They can be just diagnosed or know nothing, or be so scared they’re going to die tomorrow.”
Embattled with liver cancer, Dufour has taken a short leave of absence from her role with the hotline. Despite her struggles, she continues to hold fast to a steady resolve.
“This is what we do: live as long as we possibly can,” she said. “It’s been a team effort, and I’ve certainly got plenty of help from Susie [Simon].”
For more information on the Hepatitis C Association, log onto www.hepcassoc.org. For further details on the Help-4-Hep hotline, interested parties may reach a counselor at 1-877-435-7443.