Starting the Conversation

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HEPCredefined.com provides a portal for learning about HCV

Hep Talk by Larry Buhl

It’s been said that the hepatitis C virus (HCV) is a silent killer, meaning that the disease can be doing great damage to the body decades before symptoms appear (if they ever appear).

But it can also be a silent killer because few patients are willing to talk about the disease. Even primary care physicians and clinicians can find it difficult to thoroughly discuss HCV with their patients, either through lack of thorough understanding about the disease, or growing time constraints. Finally, given the significant recent discoveries and advances in the treatment of HCV, that it’s hard for anyone to keep up when the information is changing so rapidly.

Until recently there wasn’t a simple tool or resource for helping patients and their healthcare providers share straightforward and accurate information about the disease. Learning about treatment options, disease progression and side effects of medications required a frustrating process of churning through contradictory data from the Web.

Boehringer Ingelheim Pharmaceuticals, Inc. (BI) saw this need and in November launched HepCRedefined.com, an on-line portal developed in partnership with HCV community members and advocates to provide downloadable and shareable resources to healthcare providers, advocates, caregivers and patients.

“There is a lot of excitement about the new HCV medications, but patients and some providers have confusion and concern about issues like side effects,” says Marlene Taylor, a physician’s assistant in physiatry at Montefiore Medical Center in New York City, who compiled data for the site from her own experience over more than twenty-five years as a PA for HIV and HCV patients.

“Patients get pieces of paper all the time about medications and about the disease, that they probably won’t read.

HepCRedefined.com is interactive,” she tells A&U. “Any healthcare provider can open it up with the patient in the office and use it to start the discussion and clarify issues around treatment.”

Hepatitis is in the same place as HIV was in the mid-nineties, Taylor adds. “Many of my patients are primarily people of color and they have mistrust and fear of HCV treatment initially, and believe that the disease and treatment carry a stigma.”

A large part of treating HCV for providers, Taylor explains, is correcting misconceptions, clarifying, ensuring that patients understand all aspects of the disease. Some healthcare professionals consider this part of the job metaphorical hand-holding. But it’s important, and something that BI thinks the portal will make easier.

According to BI, HepCRedefined.com offers up-to-date data and tools to facilitate discussion about HCV, including:

· A video series for healthcare providers offering tips on support sources, clinic program highlights and patient diaries

· A comprehensive and interactive checklist tool to help patients manage considerations of being in care and getting ready for treatment

· A frequently asked questions section about the spread of HCV

· A key facts page about HCV mortality

· A page featuring multiple at-a-glance information cards covering topics about patients and the disease itself designed to help debunk myths surrounding HCV

· A community “C Pledge” where healthcare providers, patients and caregivers can take an oath to redefine the patient journey and the way HCV is perceived

The portal can be a valuable resource for primary care providers as well. Patients will often want to speak after hours with their primary care provider, and sometimes that’s not possible. If they have computers or smartphones or other media, they could access information on treatment on their own. Those without computers or internet access can call healthcare providers to look up the information for them. Having the information in one place, easily catalogued and downloadable, is a time-saver for these professionals.

Larry Buhl is a freelance journalist and screenwriter living in Los Angeles.

December 2012