The traditional view of patient advocacy is a group of patients in various stages of a condition – sick, well, wheelchaired, put your youngest and oldest members up front – storming Capitol Hill for photo ops on the steps and protesting outside an office and getting a perfunctory “we support research” from the junior staff before leaving. Surely some long-suffering well-connected heads of patient advocacy organizations and their hand-picked favorite patient are invited to testify at a hearing or opine on a bill as one of 100 in a room at a public session.
If we look closer, though, sometimes patient advocacy has a different look. Sometimes patient advocates are the policymakers themselves. Two recent experiences brought home to me the power of policymakers and key influencers sensitized by their own experiences with facing a life-threatening diagnosis, navigating a dysfunctional health system, and balancing an illness with work, family, and life.
The Honorable Hank Johnson, member of congress from Georgia’s 4th district, gave his support for the HR 3974, the Viral Hepatitis and Liver Cancer Control & Prevention Act at a press conference for the National Viral Hepatitis Roundtable after fighting his own battle with hepatitis C. Mr. Johnson discussed the impact of the legislation not only from an understanding of the statistics, as did his colleague Bill Cassidy, a practicing hepatologist in addition to representing his Louisianan constituency, but from his understanding of the stigma, fear, loss of identity, and perceived lack of productivity and potential.
My second experience in the same week came from a conversation with Billy Tauzin, the soon to retire head of the Pharmaceutical Research and Manufacturers of America. Mr. Tauzin, a former Republican and Democratic member of Congress and instrumental to the passage of Medicare Part D’s drug benefit is credited often as a savvy politician and negotiator. I appreciate how he has put patients’ voices and experiences, including his own, front and center, better connecting the products that the industry produces to the lives they save that anyone else. And he carries this voice and message to places – high-stakes formal and informal negotiations — where it truly matters. His advocacy has an authenticity money cannot buy having originated in a hospital bed, with a dire diagnosis and a medication that restored him to health.
This is not a plea for emotion-based legislation or for everyone to tout their own personal interest above what’s best for the country, but if policymakers are expected to bring their experiences in banking, business, and law to bear on their work, why shouldn’t they bring their experience as patients. While I wish every member of congress good health, I hope that if they do have personal experience with the healthcare system that they channel that into making and supporting relevant, reality-based healthcare policy.