New York City, New York
Diagnosed with Hep C in 1997
My name is Ronni Marks, and I was first diagnosed with hepatitis C (HCV) in 1997. Before people began to talk about things like “comparative effectiveness” or “patient-centeredness,” patients like me were just focused on where to go for help. Treatment options back then were painful, protracted, and unpredictable. My friends and family tried to support me as best they could, but they didn’t understand the enormity of what HCV was or what I was experiencing. At that time, the Internet was new, and there were no HCV support groups.
Now, almost twenty years later, we can finally see a light at the end of the tunnel. Since I was diagnosed, I’ve dedicated my life to creating communities for HCV patients to reach out to others facing the same challenges that they’re struggling with. And scientists have finally discovered a cure that promises manageable treatment in a manageable time and with limited side effects. But even though I know we’ve come a long way in improving the lives of some individuals with HCV, many patients still can’t access the drugs, and others are left with staggering medical bills.
When I was first diagnosed with HCV—the leading cause of liver cancer and liver transplants—I’d already had several operations. These operations started when I was an infant; I was born prematurely, and with complications, which led to my needing numerous blood transfusions at various times in my life. My doctor suggested an aggressive hepatitis C treatment regimen, and I injected interferon seven days a week. But the side effects were horrendous, and I had minimal support. When I started to search for information, I realized that there was very little. After being on treatment for 10 months—unsuccessful, and still quite sick—I stopped. And that’s when I made a promise to myself that I would never let anyone go through this experience alone.
Shortly after I stopped treatment, I joined one of the first-ever HCV support groups where I lived, and was relieved to finally meet people who understood what I was experiencing. The American Liver Foundation (ALF) had no chapter in New York, so I volunteered to educate the community through seminars, walks, and other community events. I became a patient advocate, and traveled to Washington, D.C., Albany, and to the NY City Council to speak about the importance of addressing the HCV epidemic. In 2000, I started an HCV support group at NYU/Langone Medical Center.
In 2010, I took my passion for helping other HCV patients a step further, starting my own nonprofit organization to address the lack of support for people living with Hepatitis C. The Hepatitis C Mentor and Support Group (HCMSG) was founded to provide resources, training and services free of charge to HCV patients, individuals co-infected with HIV/AIDS and patients in need of liver transplants. I’m proud that many hospitals, organizations and substance use clinics have signed on to assist in providing these services.
Since I became a patient advocate, it’s truly remarkable how much progress has been made in the treatment of HCV. There is a whole new generation of drugs that promises a cure for most patients—drugs with a shorter treatment time and fewer side effects. Six months ago, I was one of the fortunate ones to access these new treatments, and I can barely articulate my joy in saying that the virus is no longer detected in my body. Until you clear this virus, you have no idea of how much it has impacted your whole being. My cognitive skills have vastly improved and I have significantly more energy. After living with the virus for 20 or 30 years, it is quite an awakening to realize what “normal” is really supposed to feel like!
While the cure for HCV should mark an incredible moment of rejoicing among the HCV community, we are seeing severe restrictions to access treatment because of the high cost of these drugs. Instead of focusing on the life-long benefits of treatment, access is being limited under the guise of short-term cost-savings. However from my viewpoint, living without the burden of HCV, I hope to forego tens of thousands of dollars in future treatment while living a more productive and fulfilling life. Although short-term savings may be a shiny object to those whose chief objective is to contain medical costs, a holistic approach to treatment is the only option for the patients whose lives depend on it.
To build a truly patient-centered healthcare system, we must all become effective advocates and make our voices heard. Decisions made now on who “deserves” to be treated will set a precedent for cures discovered in the future. Regardless of race, gender, sexual orientation or economic status, patients from all walks of life are entitled to testing, diagnosis, linkage to care and supportive services. You must be your own health advocate and for those who can’t, some of us need to speak even louder.
What three adjectives best describe you?
Optimistic, savvy, motivating
What is your greatest achievement?
Saving someone’s life
What keeps you up at night?
Patients not having access to the new hep C medications
If you could change one thing about living with viral hepatitis, what would it be?
The impact HCV has on one’s whole being
What is the best advice you ever received?
Be the person you are.
A version of this story first appeared on the Partnership to Improve Patient Care (PIPC) Patients’ Blog. Reprinted with permission from Ronni Marks.