Five Questions With: Dr. Lynn Taylor

"The stigma surrounding the disease is not diminishing. The worst part of this is the stigma within the medical profession itself."

Dr. Lynn Taylor is an HIV and viral hepatitis specialist and primary care physician. She developed and directs The Miriam Hospital’s HIV/Viral Hepatitis Coinfection Program, providing multidisciplinary care to HIV/hepatitis C virus (HCV) and HIV/hepatitis B coinfected persons. Her research, policy and community work involve extending HCV care to persons with HIV and co-existing substance disorders, and improving HCV screening, diagnosis and treatment access. Taylor developed and directs, RI Defeats Hep C, a program dedicated to the elimination of HCV in RI, via a RI Foundation Innovation Fellowship.

PBN: Are people reluctant to participate in hepatitis C screenings? If so, why are they reluctant?
As we address hepatitis C in a more comprehensive way, we need to consider barriers at the patient level, physician level, and systems level. I do not think that people are reluctant to be screened for hepatitis C once they are made aware of the existence of this infection, risks for infection, and of the benefits of being diagnosed, evaluated, treated and cured, and once they have access to screening.
The barriers to hepatitis C screening are predominantly at the provider and systems levels. This means that many physicians are not as up to date as would be ideal about the rapidly evolving understanding of hepatitis C and whom to screen. Screening has not yet sufficiently been incorporated into medical systems and settings. If we can get doctors and medical systems more involved with hepatitis C, more people will be screened. The U.S. hepatitis C population is disproportionately underinsured, creating a challenge to getting providers and medical systems up to date with hepatitis C screening recommendations.

PBN: How many people would you estimate have undiagnosed hepatitis C in Rhode Island?
According to a study published in the July 2014 edition of the RI Medical Journal, an estimated 16,000 Rhode Islanders are infected with hepatitis C. The U.S. Centers for Disease Control and Prevention (CDC) estimates that three-quarters of Americans living with hepatitis C remain undiagnosed. Therefore, I estimate that 12,000 people have undiagnosed hepatitis C in Rhode Island.

PBN: What first got you interested in the disease?
I specifically entered medical school five years after college, to work on HIV/AIDS. During my residency training at Brown University-Rhode Island Hospital from 1997 to 2000, I cared for many patients with hepatitis C. While I witnessed extraordinary community support, medical care, research funding, public health interest and programming for HIV, none of this existed on a large scale for hepatitis C. Seeing individual people suffer from hepatitis C made me want to do more.

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PBN: What has changed in treatment of the epidemic since you first studied the disease? Is it a less devastating diagnosis than it used to be?
When I first started doing hepatitis C work, I was advised to stop. I was cautioned that this was not a curable infection; that hepatitis C was not a serious disease or important epidemic; that treatment was horrible and ineffective; and that there would be no research funding. Everything has changed, and much has changed for the better. We now know that C is for cure – hepatitis C is curable. Cure is beneficial, as it reduces hepatitis C-related illness and death. Novel medications in pill form are now available with many more under development, to cure hepatitis C safely in most people most of the time. We can now cure hepatitis C without the dreaded interferon injections.
On the other hand, it is only recently understood that the hepatitis C epidemic is much more widespread than previously realized, with 1 in 30 U.S. baby boomers having this infection. This is the most important infectious disease of our time in the U.S., now killing more Americans than HIV.

PBN: Is stigma surrounding the disease diminishing? How is stigma affecting treatment of the disease in 2014?
The stigma surrounding the disease is not diminishing. The worst part of this is the stigma within the medical profession itself.
Due to the up-front costs of some of the new hepatitis C pills, some people are trying to come up with rationing schemes to limit the number of patients that payers such as private insurance companies and Medicaid must provide these medications for. Once of the common approaches is to deny medications to certain groups of patients, specifically people who use drugs and/or alcohol, a very heterogeneous group. This approach is not consistent with evidence-based science and principles of distributive justice.
Non-discrimination is fundamental to an evidence-based, rights-based response to hepatitis C and effective public health programs. I am profoundly concerned that institutionalizing this discriminatory standard of care reinforces stigma, undermines good medical care, and is a significant step backward for patients most at risk of hepatitis C.