Table 1 PEG Member Biographies

Irvin “Finton” Brown (FB)

I was diagnosed with HCV in 1998 by my primary care physician. I do not know how I contracted the virus. I can thank my doctor for suggesting that I should get tested since I am a “boomer.” I had a liver biopsy in 2000 and it showed that there was virtually no liver damage. These tests were done at the University of Nebraska Infectious Diseases Clinic since I was living in Omaha. My doctor decided that the treatment at the time was not worth the effort since I am a mixed-race male part being African. He advised that I should wait and monitor my condition over the years. I moved back to NC in 2010. Here I got a new doctor at the UNC liver clinic. I was again monitored until a treatment was acceptable to my doctor. I took HARVONI for 3 months and have been HCV free ever since. While I was being tested at UNC Liver clinic, I got a call from Donna (Evon) at UNC. She asked if I would join a group of others who had also had experiences with HCV. I said yes and the UNC HCV-PEG was formed to help with PROP-UP. Then UF asked if we would help with PRIORITIZE. So here we are today.

Lourdes Chaney (LC)

I was born in Puerto Rico. My journey with HCV began in 1991 when pre-testing for surgery and test results showed that I was positive with the virus. In 1993, with minimal understanding of the disease, I was given my first treatment with Interferon/Ribavirin. After 2 months of treatment, a high white blood cell count kept me from continuing the treatment. For the next 20 years I attempted two more treatments spaced years apart but still had detectable virus. Finally, in 2014, Sovaldi was approved and a few months later, I started treatment with Sovaldi/Ribavirin and was cleared after 12 weeks. I joined the UNC HCV-PEG in 2014 and continue to be an active member. I am currently a Staff assistant for the local government in Florida with a degree in Business and working on bachelor’s degree in Computer Technology.

Alan Franciscus (AF)

In 1966 I began traveling throughout the United States doing odd jobs including working in a warehouse, string factory, civil service, highway worker, and retail before settling down and earning a work degree in computers and accounting. Subsequently, I began work as an accounting clerk in two organizations in the San Francisco Bay Area. During this time, I went back to college and earned an associate degree and was applying to college when I was diagnosed with hepatitis C (HCV).

In 1989 I was diagnosed with HCV genotype 1. Shortly after my diagnosis, I was treated three times before being cured – daily injections of interferon (Intron-A) for 6 months; a high dose of daily injections of interferon (Infergen) for 10 months; a weekly injection of interferon (Pegasys) for 70 weeks.

After my diagnosis, I found that there was a lack of information about HCV available to patients and their medical providers. As a result, I decided to start the Hepatitis C Support Project (HCSP), an HCV Advocate Website, and a national training program to help educate and support people living with hepatitis C, their medical providers, and other advocates.

In 2013 I joined the UNC HCV-PEG. In 2019 I retired from UNC HCV-PEG, HCSP and HCV Advocate Website due to health concerns and did not participate in authoring this manuscript. I will cherish the memories and always be proud of the many people that were helped by my efforts.

Larry Huston (LH)

I am from a small town in North Carolina. I graduated high school in 1968 and East Carolina University in 1976. After graduation I moved to Richmond, Virginia where I got married, got divorced and used drugs to numb the disappointment. Despite myself, I worked hard and started a career selling merchandise to major retailers on the East Coast. As my business grew so did my drug use.

Love found me again and was married in 1990. I became a father and responsible for a family of five. Drugs became my escape.

On a routine physical, I was diagnosed with Hepatitis C, and my doctor gave me a choice: wait for the new drug options coming or go ahead with the current treatment plan. For the next 48 weeks I took Interferon, Ribavirin, and Telaprevir, and was cured.

During my treatment I met Donna Evon. She was my treatment “shrink.” She asked me if I would review a binder that she was putting together to help educate people on HCV. I was happy to help. I learned so much about HCV, most of which I was clueless. Donna was also establishing a PEG study and invited me to participate. In the meantime, I was reinfected and treated with Epclusa and cured again. 7 years later, I am still here.

My journey has been rewarding. I have learned so much about the HCV virus and treatment while meeting outstanding physicians and nurses. I have had a chance to work with my peers - free of judgment or prejudice. Today, I feel grateful and blessed to have been able to participate in such an important study.

Scott Kixmiller (SK)

My HCV journey began in 1998. While in treatment for Substance Use Disorder, I tested positive for HCV. I am certain I contracted it through IV drug use sometime between 1996 and 1998. I was afraid of what HCV was, but I spoke with a nurse at that treatment center who had knowledge of HCV and she provided me with a referral for further testing. In 1999, while seeing my gastroenterologist and my viral load had increased to over 9 million, I was invited to take part in a drug study using Interferon and Ribavirin. At the time, I was participating in 12-step groups and had several people who had experience with HCV treatment try to discourage me from getting treated with the drugs. They kept telling me that I would get depressed and that the medications would not work (at the time, one in ten successfully had sustained virologic response - SVR). I remember praying about it and one day, when I got home from work, I found in my mail an acceptance letter from Schering-Plough that said all my medications would be covered for the entire study.

I cleared my HCV at 12 weeks but continued to administer medication and remained in the study protocol for a total of 44 weeks. I remember giving myself a shot of what felt like a mild flu every day at first, then three times a week. I used my support network to help get me through the tough times. Since clearing, I have been tested periodically through the years and remain with SVR.

Nine years later, while pursuing a Master of Social Work degree, I found a position as a research assistant on one of Dr. Evon’s studies entitled, “A Randomized Controlled Trial of an Integrated Care Intervention to Increase Eligibility for Chronic Hepatitis C Treatment” [5]. I graduated in 2010 and became an addiction and mental health therapist as a Licensed Clinical Social Worker and Licensed Clinical Addictions Specialist in the state of North Carolina. Two years after the publication of Dr. Evon’s paper, I was invited to join the UNC HCV-PEG in August 2013. My experience as a master’s student enabled me to be able to volunteer as the lead author of our paper starting in early 2019.

Anquenette P. Sloan (AS)

I am what you may call a “military brat” born into a Marine Corps family living on Navy and Marine Corp bases until age 18 when I left to attend college. If you have spent any time around the military you know once a “brat” always, a “brat.” In the following 16 years I worked to finish my degree in Public Health working as a Personal Banker for a Record Company, as a Personnel Manager, and a Pizza Store Owner. I was married twice, had a blended family of 10 children: yours, mine, ours and someone else’s. Today, I am the proud grandmother of 15. My career in Public Health started at the height of the HIV/AIDS epidemic in the late 1980’s while working in the state of Ohio. I worked with the American Red Cross, the CDC, and the State Health Department of Ohio. For 28 years, I helped develop education programs and services for people living with HIV/AIDS and prevention programs as a Public Health Administrator Specializing in Infectious Diseases. I was appointed by the Governor to the State of Ohio Medical Board and served for 7 years.

My journey with HCV began unbeknownst to me in 1990 when I received blood products during a five-hour surgery. I never thought about HCV but during the years that followed I had fatigue, loss of appetite, and fever, which can be written off as anything. My life was so busy I never thought that I could have a disease and of course we were all tested many times for HIV because of the proximity to infected people. In 2008, I retired and moved back to North Carolina. In 2011, I had a life-threatening accident that caused brain damage and loss of some motor skills on my left side. I received the diagnosis of being positive for Hepatitis C while in the hospital. I was being treated at UNC and was referred to Dr. Donna Evon in 2012, where she and the team recommended that I wait for new medications to be made available before I received treatment. Dr. Evon invited me to join the UNC-HVC-PEG in 2013. I began treatment at the UNC Gastrointestinal Clinic through a medication assistance program in 2014. I used Harvoni for 12 weeks in 2015, cleared the virus, and remain virus-free. I serve as a Co-Chair of the PEG and a member of the Steering Committee.

Kim Thomas (KT)

For most of my adult life, I was dealing with a lengthy period of physical or medical problems that stemmed from an auto immune disease (HIV), which I contracted from my male partner of many years. Once getting out of denial and getting my health in alliance with a regimen of medications, I became undetectable and have been for over 20 years.

In between this time, I tested positive for HCV. Because I was already under a provider’s care, I was offered treatment under a research study that used a combination of daily Pegylated Interferon injections with twice a day Ribavirin medication. The study/treatment regimen was supposed to last 48 weeks, but because I did not respond to treatment, it was discontinued.

Later in 2013–2014, another new drug, Harvoni was introduced that my insurance paid for, so I began a 24-week regimen. It was successful and I was cured of HCV. Also, in 2013, my providers chose me to share my experiences and be a part of a randomized controlled trial which is an Integrated Care Intervention that is to increase the Eligibility for Chronic Hepatitis C treatment. I joined the UNC HCV-Patient Engagement Group and continue to be a regular contributor.

I have worked, volunteered, and retired at clinics and psychiatric hospitals. I started my career with a bachelor’s degree in Organizational Psychology Development with a concentration in Dual Diagnosis Disorders.

Summer Wadsworth (SW)

In the early-1980’s after severe flu-like symptoms, I was diagnosed with non-a/non-b Hepatitis now known as Hepatitis C or HCV. At the time, there was not much that was understood about HCV nor was there a treatment. I lived life with chronic pain, fatigue and was treated for depression. Still over the decades, I participated in local theatre, graduated college, got married a couple of times, had a daughter who is now in college, and taught middle and high-school theatre. Several years ago, I participated in an HCV clinical research trial but became anemic, had viral breakthrough, and had to discontinue the trial. Following a year post treatment failure, I decided to try again using standard of care treatment which included not only Interferon and Ribavirin but also Solvaldi. Within 12 weeks there were no levels of virus detected and I was considered cured. I used to like to say that I was living “harmoniously” with my hepatitis, but the truth is I really did not understand how sick I was until I wasn’t anymore. I joined the UNC HCV-PEG in August 2013 and am currently a Co-Chair representing the PEG and am a member of the Executive Committee.