When I was first diagnosed with HCV—the leading cause of liver cancer and liver transplants—I’d already had several operations since I was an infant and had received numerous blood transfusions. My doctor suggested an aggressive 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 ten 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 traveling to Washington, Albany, and to the NY City Council to speak about the importance of addressing the HCV epidemic. And in 2000, I started an HCV support group at NYU/Langone Medical Center.
In 2010, I took my passion for helping other HCV patients one 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. And I’m proud that many hospitals, organizations, and substance use clinics have signed on to assist in providing these services.
Since I became involved as 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 the joy in saying that the virus is no longer detected in my body. Until you clear this virus, one has no idea of how much it has impacted their whole being; my cognitive skills have vastly improved and I have significantly more energy. After living with the virus for twenty or thirty years, it’s 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, because of the high cost of these drugs, we are seeing severe restrictions put on who gets access. Instead of focusing on the life-long benefits of treatment, access is being limited under the guise of short-term cost-savings. But as a matter of fact, living without the burden of the Hepatitis C virus, 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, as decisions made now on who “deserves” to be treated will set a precedent for cures discovered in the future. Regardless of race, gender, 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.