I’ve been living with epilepsy for more than 50 years. And although this disability has contributed to both highs and lows throughout my life, it has served as my primary motivation to see underserved and underrepresented populations — throughout our nation — get the attention they need and deserve. Most recently, it led to my commitment to ensuring patients have good information on their health care options by supporting a national investment in comparative effectiveness research that is centered on the needs of patients and their caregivers.
[IMGCAP(1)]Unlike many epileptics, I wasn’t born with the disorder. Rather, my epilepsy is a result of head trauma I suffered as a victim of a car accident as a teenager. Unfortunately, growing up in a rural California farming community in the 1950s, my parents were not well-informed in trying to deal with my seizures. They believed my illness was spiritual in nature, not physical, and sought witch doctors and healers in an attempt to rid me of the evil demons they thought possessed me.
Of course, the séances and rituals did nothing to end my seizures, so I went through high school and college continuing to pass out and not knowing why. It wasn’t until I was taking a physical for entry into a Catholic seminary that the doctor asked me about my epilepsy.
I was shocked and astonished by the question this doctor had just asked me: Prior to this moment, as hard as it may seem, I had never heard the term “epilepsy.” But learning that my disease had a name, and that it wasn’t uncommon at all, provided me with an incredible sense of relief and joy. However, my joy was quickly muted when the doctor informed me that Canonical Law forbade epileptics from entering the priesthood.
Soon the profound relief that my disorder could now be treated was overshadowed by the realization that my faith, family and many friends were rejecting me because of my illness. This led to a severe depression and even suicidal thoughts. However, these personal trials formed in me a deep conviction that I would overcome my condition, not be limited by it; and that I would commit my life to bringing equality to the disabled community.
Since then, as both a patient advocate and a policymaker, I’ve worked to bring patients into the center of health care. I’m proud to have helped author the Americans With Disabilities Act — a landmark piece of legislation that profoundly changed the way people with disabilities are treated in this country.
The ADA just celebrated its 20th anniversary last month, and it’s truly rewarding to see the important steps our nation has taken to bring about social justice for the disabled. It’s our human duty to sustain a culture in which individuals are able to reach their fullest potential, and I’m glad to have played a small part in making that dream for many disabled Americans a reality.
More recently, I’ve been engaged in the debate over comparative effectiveness research on behalf of patients. My own experiences have taught me how important it is for patients to be brought from the margins to the center of our health care system, to support patients with good research, and to make sure this research is in response to our needs as patients.
The goal of CER is not new — making sure information is available to help doctors and patients make the health care and treatment choices that are best for the individual. But during the health care reform debate, CER emerged as an important, and at times contentious, issue.
While legitimate concerns were raised about how CER ultimately would be used, the issue also was mischaracterized by equating research with rationing. The reality is that CER holds tremendous potential for improving patient care, but it needs to be done right.
As I described in an article for the current issue of the health policy journal Health Affairs, thanks to the health reform law, for the first time we have an approach to CER that will be patient-centered.
Specifically, the new Patient Protection and Affordable Care Act established the Patient-Centered Outcomes Research Institute, a 21-member board that will guide the federal government’s billion-dollar comparative research effort. And, most importantly, a patient will be on the board: a patient who personally recognizes the challenges and hopes that medical care can bring.
This patient perspective will bring a richness and completeness to the treatment discussion that has been missed for generations. And it is especially important as we move into a time in which targeted therapies and personalized medicine emerge from research and enter clinical practice.
We have a unique opportunity to get CER right. If the law’s provisions for the new institute are implemented effectively and CER is patient-centered, millions of patients and providers will have the strongest evidence possible to help inform their health care decisions in ways that help meet patients’ individual, personal needs.
We owe it to patients across the country to make sure the new institute is effective. And because at some point we’re all patients, empowering the PCORI board will help every one of us.
Tony Coelho, a former Member of Congress, is the chairman of the Partnership to Improve Patient Care. His personal-perspective piece on comparative effectiveness research is featured in the October issue of Health Affairs.