HCV Patient Registry

By: Marcus Hopkins, Blogger

In 2015, the Community Access National Network (CANN) and its project, the “Hepatitis: Education, Advocacy & Leadership” (HEAL) Coalition, have partnered with the Patient Centered Outcomes Research Institute (PCORI) and their project, Community Engaged Network for All (CENA), to help spread the word about a recently developed patient-centered program, the Hepatitis Foundation International Patient Registry Network (HepPRN).

Hepatitis Foundation International (HFI) Patient Registry Network (HepPRN™)

Hepatitis Foundation International (HFI) Patient Registry Network (HepPRN™)

The HepPRN was introduced in October 2014 as a way for Hepatitis-infected patients and those affected by patients living with Hepatitis to share their stories of living with Hepatitis. It does so by collecting self-reported data from patients and caregivers on a wholly voluntary basis, and each person who signs up for the Registry will determine his or her own personal data sharing, privacy, and access preferences.

These sorts of projects help to create a very effective dialogue that can help to raise awareness about various disease-related issues, and has been used to great effect by patients and caregivers living with HIV/AIDS. While Hepatitis is becoming an ever-increasing concern in the healthcare community, it doesn’t always get the most press coverage, other than to speak about how expensive it is to treat.

With that lack of explanatory press coverage comes a dangerous consequence – sometimes, the price can seem to outweigh the “knowing” aspect of getting tested.

In the first twenty years of the HIV/AIDS crisis, one of the first things I learned about the virus was how expensive and burdensome it was to treat. I was a sophomore in high school in Kingsport, TN, when I sat through a guest lecture by a local man who was living with HIV during our mandated sex education course (back when we still had Comprehensive Sex Ed).

He went through the basic of what it was like to live with HIV, and some of the stigma against which he fought, but what I remember most about his talk was when he took out and displayed across the otherwise empty desk no fewer than seventeen different medications that he took for treatment.

I remember thinking, at the time, “Dear God! How does he keep up with all of that? That must be such a hassle!”

While the message I should have walked away with was how to avoid becoming ill, I instead left thinking, “I just don’t want to deal with all of that crap!” In retrospect, it was a very effective way to reach a teenager for whom a dollar sign meant very little. When the parents are the ones who’re paying, money is rarely a consideration.

Unfortunately, the same approach is much of what has been stressed in the information campaign of the last few years, but this time, it is being directed towards adults, for whom money is a major consideration.

Much has been made about how much easier to tolerate the latest HCV drugs are than their Interferon-based predecessors, but even more attention has been shed on how expensive these treatments are. In my own educational and casual conversations about HCV, I make certain to address the subject, pointing to the fact that the new treatments for HCV are more expensive, now, than the latest treatments for HIV/AIDS (Sovaldi at $85,000/twelve weeks vs. Stribild at $37,000/one year). That factoid is shocking, particularly when most people still have the perception that treating HIV requires a boatload of pill bottles.

The HepPRN is part of the solution to getting people to think beyond the price tag, and unfortunately, they face an uphill task; the reality that fewer than a handful of pills can cost almost double the average American annual income is daunting, and often leads people to think, “I’d rather not know, than have to worry about whether or not I can afford treatment.”

It is these sorts of compunctions that personal stories help to combat.

That said, I have to be honest – when I first heard of the HepPRN, I was immediately made wary of the project, simply because of the name.

It can be exceedingly difficult, at times, to come up with names for projects and organizations. The urge to create something “snappy” and “memorable” needs to be weighed with the connotation that associated with specific words. In this case, that word is “Registry.”

As someone who grew up during the HIV/AIDS crisis of the 1980s, I have very firm memories of the concept of “registries,” as there were very well publicized legislative efforts to forcibly register people with HIV/AIDS for whatever purpose – at the time, it was “monitoring.” This was my first thought when I heard the name of this project, and I must say, it wasn’t a good first reaction.

There is something alarming about the word “Registry,” as it implies making a list; when paired with an infectious disease, creating lists of people who have a disease raises red flags, for most people, particularly for Americans, and most certainly, for older Americans – those most likely to be infected with HCV.

While the aims of the HepPRN are both admirable and a proven good tool for helping to spread awareness, I worry that its name may prevent more people from signing up to use the tool, share their own stories, or give it the heft it should carry in the healthcare conversation.

Again, picking a name is very difficult, and I’m certain that various attempts were made to create something memorable (and easily shrunken into an initialism – what most people mistaken call an “acronym”), and so, I hope that the effort goes well, for them. Although I am not personally affected by Hepatitis, I will certainly be more than happy to refer people who are to this very valuable resource, and will place behind it my full support.

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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