HCV New Drugs

The Patients Are Out There, the Hard Part May Be Finding Them

We are in the midst of a revolution in hepatitis C virus (HCV) infection treatment, with new drugs poised to enter the clinic within months, and many others following behind them. Even patients infected with the hard-to-treat HCV genotype 1a are seeing improvements in treatment outcomes in clinical trials. However, prerequisites for translating these study results into improvements in outcomes in the real world include identifying infected individuals and ensuring they access care. Unfortunately, most patients are either unaware that they are infected, have not acted upon the knowledge of their infection, or are not engaged with the healthcare system at all. This last group of patients may present only after they develop serious complications, resulting in their first engagement with healthcare being for terminal care. These unaware, untreated, and uncared-for patients need someone to find and guide them into care before their condition becomes untreatable.

Know the Community, Know the System, See the Results
Community advocates represent an “underutilized resource” in the battle against HCV infection. They can act as a motivating force to those, as yet, untested and untreated patients. They can reach people who might not otherwise enter care. They can empower individuals with basic health literacy, and their own personal experiences can lend a priceless weight and credibility to their recommendations. They may act as a point of referral to primary and specialist medical care and provide a form of patient navigation through a complex system. For some, their dual role as members of the community and patients themselves gives them a unique standing that they can then use to overcome the lack of trust for the healthcare system expressed by individuals in some communities. Patients see community advocates as independent. This allows them to foster trust and establish an environment where patients feel at ease, where they are treated in a nonjudgmental manner, and where they may be more comfortable in telling the truth about personal matters: self-worth, future prospects, or even existential concerns. Few hepatologists or other caregivers have the time or skills to provide this form of care.

Real-World Outreach
I’ve been privileged to work with an especially active and effective community advocate, Gloria Searson, and her advocacy group, COPE (Coalition on Positive Health Empowerment), where I serve as medical director. They provide HCV screening at health fairs, church events, barbershops, public parades, local politicians’ street fairs, and other community events. Their primary function at these events is to educate those in attendance and offer them rapid HCV tests. Patients who test positive are referred to an appropriate care setting. My role as medical supervisor is to ensure that the processes are medically appropriate, including regulatory matters, test kit storage, appropriate consenting and record keeping, etc, in addition to providing a referral site for both primary and liver-directed care.

Groups such as COPE are in a unique position to help optimize preparedness for treatment and provide patient support during treatment. The major barrier is financial support. To date, COPE’s programs have been funded mainly by grants from pharmaceutical companies. Increased and sustained funding from governmental or other sources would increase the number of community advocates reaching those who might otherwise go untreated until it is too late to prevent serious morbidity and mortality.

Do your patients and community a favor. Find your community advocates. Use them. Support them. Advocate for and recognize them and their unaware, untreated, uncared for patients.

Your Thoughts?
It would be fascinating to hear your own experiences with community advocacy or outreach programs. How has your practice and/or community been influenced by their work? How could they be better used or their services expanded to reach an even broader patient population?