Please tell me a little bit about yourself.
LUCINDA: I was a patient who was infected with hepatitis C in 1988, and I turned that into an opportunity to learn more about hepatitis C. I have been working in this field since 1997. Along the way, I worked at Stanford Medical Center in their Hepatology Division. I’ve also done a lot of writing since the late ’90s, and I wrote two books, both of them on hepatitis C. Currently, I work as a contributing editor for HepMag.com and write for the HCV Advocate. My bio is on my website (lucindaporterrn.com).
My first question is what do you see as the biggest challenges associated with the hepatitis C epidemic in the U.S.?
LUCINDA: I see three problems. The first is that we need to identify and test those patients who are still undiagnosed. I think that’s a huge issue because they’re not getting screened, particularly baby boomers.
Number two is once they’re screened, we need linkage to care and access to treatment. Many patients are facing huge hurdles trying to access treatment. There are some unscientific, unmedically-based reasons why insurance payers and state Medicaid programs are denying hepatitis C treatment to patients.
The third problem is that we need to do something about the current increase in new infections, particularly in high risk communities such as Kentucky, West Virginia, Tennessee, and Indiana, as well as in other areas of the U.S. that are having problems with opioid addiction, whether from prescription painkillers or heroin. New hepatitis C and HIV infections are on the rise, and the tragic fact is that there are multiple ways we could prevent these.
Between 2010 and 2013, there was a 150 percent increase in new infections. Twelve states reported a 200 percent increase in new hepatitis C infections in the past few years. It’s really a problem.
So you mentioned access to treatment and insurance coverage, and we were just wondering, in your opinion, does the cost of the newer oral agents and HCV regimens introduce socioeconomic and ethical considerations in the treatment of HCV?
LUCINDA: First of all, it shouldn’t. That’s the best quick answer. But it does, and the biggest problems are that, firstly, people who don’t have access to care, insurance or money are unable to get this treatment. Secondly, those patients who are covered under insurance plans that are administered by state Medicaid programs or private insurance are having a difficult time getting access to hepatitis C treatment unless they meet certain requirements. These requirements are not reasonable and they’re neither scientific nor evidence-based. They’re somewhat arbitrary, and I believe that the arbitrariness exists because of the stigma that’s attached to hepatitis C, that it’s a drug user or a person with a drug-using history who might have this disease. I don’t think that we would see this issue if we were talking about babies??
Okay, and I was also wondering what your thoughts are about targeting the newer oral HCV regimens to specific populations such as active injection users or incarcerated individuals?
LUCINDA: Well, I’m a big proponent of that. I think that’s fair. If you treat active drug users, you will reduce the overall transmission rate. Data highlighted in a recent review by Phillip Coffin and Andrew Reynolds indicates that treating 8 to 15 percent of hepatitis C-infected active injection drug users annually would reduce hepatitis C prevalence by 75 percent over 15 years, and that’s really remarkable (Coffin PO, Reynolds A. Ending hepatitis C in the United States: the role of screening. Hepat Med. 2014 Jul 3;6:79-87).
Wow. And what are your thoughts on restricting hepatitis C therapy to patients with advanced fibrosis or severe complications and/or symptoms?
LUCINDA: It’s completely wrong. First of all, the AASLD/IDSA guidelines make it very clear that treatment is for everyone except those who might have a very short life expectancy and who would otherwise not benefit from hepatitis C treatment. Denying treatment to those in the early stages of their disease directly opposes what the science says Commonsense tells me that the earlier the treatment, the better. For example, we wouldn’t restrict diabetes treatment to somebody who was in the early stages of diabetes and say, “wait until you lose a couple toes before we’re sure that your diabetes is bad enough,” so why do this to hep C patients?
Commonsense says you should treat before someone before they are very ill.Yes.
And could you explain the nurse’s role in the screening and care of patients with hepatitis C? And as a nurse, what challenges have you faced?
LUCINDA: Well, I haven’t done direct patient care for about seven years, so I really don’t feel that I can answer that with current experience. But based on my past experience, I think that the main thing is to make sure that people get screened, particularly baby boomers and anyone with risk factors, and then help them through the process of identifying their choices, working with their care provider, and identifying resources to help patients pay for the medications that will support them through treatment, and through living with hepatitis C. We need to make sure that patients understand what they need to do to reduce the risk of transmission to others, and how to prevent reinfecting themselves.
And what are your opinions about the birth cohort screening for hepatitis C?
LUCINDA: I don’t get why we’re not following it. I think it’s absolutely necessary. I appreciate the CDC for their work and their efforts to try to bring this into implementation, but unfortunately, I hear stories, many stories of physicians who won’t bother to implement the recommendations because they don’t think that patients have to worry. I don’t think they realize the significance of the recommendations.
Yes. I live in the New York Metropolitan area and what we’ve seen here is that many physicians don’t even know about it.
LUCINDA: That’s true. And even if they do know about it, they’ll say to their patients, “well, did you ever have a blood transfusion or were you ever an injection drug user,” and their patients will say “no”, and the physician will say “well, you don’t need to be tested then.” That really underappreciates the recommendation. The risk factor is the birth year. That’s the only qualifier.
Yes. And what do you see as the biggest challenges associated with the diagnosis and screening of hepatitis C from the patient’s perspective?
LUCINDA: First of all, it’s always frightening to have a diagnosis of a disease, particularly one that’s potentially infectious and has some mortality and morbidity issues attached to it. So, fear is the first big hurdle, and the next hurdle, which I think is even bigger than fear, is really trying to get treated for it. I find it heinous that people are denied treatment, but what is even worse is when physicians won’t even write the prescription in the first place. I understand that the providers’ offices are overwhelmed by the amount of staff hours it takes to try to secure these treatments, but sometimes, it goes more easily than one might think. Some providers aren’t even trying.
I live in rural Northern California, and the providers won’t even try to treat their patients because they just say, “well, you’re not sick enough.” It’s horrible.
Well, these were all my questions. Do you have anything that you’d like to mention that I might have forgotten to add?
LUCINDA: Yes, regarding AASLD’s liver meeting, I’d like to put in a plug for patient presence at the meeting. AASLD has made terrific strides in the past two decades, offering education for mid-level providers and working with advocates more. Industry reps are welcome to the meeting, but the patient’s voice is noticeably absent. Between the price and the programs, it isn’t a patient-friendly meeting. Offering a place for patients at AASLD would complete the picture. After all, this meeting isn’t just about the study of liver disease, it’s about the study of people with liver disease.
Lucinda Porter is a nurse, speaker, advocate and patient devoted to increasing awareness about hepatitis C. She is the author of Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C and Hepatitis C Treatment One Step at a Time: Inspiration and Practical Tips for Successful Treatment. Lucinda is a member of the Hepatitis C Support Project advisory board and writes for various publications, including HEP and the HCV Advocate. She was a clinical research nurse at Stanford University Medical Center’s Hepatology division.Lucinda is a national speaker, and has presented at TEDxWomen as well as numerous conferences, workshops, webinars, radio shows and podcasts. She was named the top Social HealthMaker in hepatitis C by Sharecare. Lucinda’s books, blogs and articles offer practical tips, humor and encouragement, guiding patients to live well and free from the burden of hepatitis C. She is working on a book of daily inspirational readings for those with hepatitis C. Lucinda lives in Grass Valley, California with her husband, Ed Porter. After living with hepatitis C for 25 years, she was cured in 2013.
This November 14, 2015 interview originally appeared on the American Journal of Medicine’s Hepatitis C Resource Center Blog, and was conducted by Klara Czobor. Permission to reprint given by Klara Czobor and Stephen Strudwick, PhD at the Hepatitis C Resource Center.