The Politics of Rare Disease

I’ve been called a political animal. I’ve volunteered for more than 80 political campaigns, served on the board of a political organization, and worked as a speech writer for two cabinet officials in the administration of former New Jersey Governor Chris Christie. Just a few weeks ago, I was also elected to the local Republican committee.

After I transitioned to a career in healthcare communications at SmithSolve, my friends and family asked if it was a huge adjustment. The answer has been a resounding “no.” A strong and compelling message about healthcare, and rare disease in particular, maintains an important and influential place within the political space.

When political science professors explain that “all politics are local,” the meaning goes far beyond geography. The term really translates to “within your community,” which could be your physical neighborhood, your church, your classmates, or any other cohort to which you belong. This means a “local” issue for you is one that impacts one of these communities.

In my experience, very few issues are more “local,” or affect more communities, than the impact of rare diseases. Within the myriad of issues and challenges that politicians and pundits rattle on about, there is none more personal, or with greater impact to you and the people in your community, than your health or the health of loved ones.

Rare disease impacts almost everyone in some way, shape, or form. Virtually everyone in this country personally knows or knows of somebody who is battling a rare condition. Maybe it’s your friend. Or your sibling. Your classmate. Your spouse. Your child. Or maybe you’re one of the nearly 10% of Americans who live with a rare disease yourself.

In politics, the impact that you can have is greater than most people believe. More often than not, changes from local ordinances to sweeping federal legislation starts with a single person standing up and saying “this can’t go on.”

Similarly, many people seem to underestimate the impact of an advocate from a rare disease community. Many people with rare diseases – or their families – have taken a stand or demanded change. They’ve made their voices heard to their communities, to policy makers, and, in many cases, directly to the researchers and pharmaceutical companies working to develop new treatments. And their efforts have led to incredible breakthroughs in rare disease research from clinical trial design to regulatory review. The FDA’s recently announced guidance on patient-focused drug development is just the latest example.

The efforts of these advocates is staggering, and they’ve become superheroes to their communities. In that respect, I view my position as the role of a sidekick, because even Superman needs the Justice League from time to time. Through my work at SmithSolve, I help people see the value of these new and novel treatments. It has become a privilege to help empower these advocates by connecting them and their messages with various stakeholders and informing them of these new therapies and treatments.

As a standard talking point, politicians and policymakers like to refer to “a need to come together.” Few areas receive such broad support as finding new and better ways to heal the sick. Together we can act as a diverse team of sidekicks to those who have been advocating so hard to heal themselves and those in their respective communities. I look forward to continuing to help these brave advocates do just that.