Janice Buelow, R.N., Ph.D., F.A.A.N.
Vice President, Research and Programs
Philip Gattone
President and CEO, Epilepsy Foundation
The voices and experiences of people with epilepsy provide critical understanding about the impact of epilepsy on everyday life. These stories teach us about the day-to-day struggles caused by unrelenting seizures and their overall effect on patient and family life. Seizures are related to poor physical, psycho-social, and mental health outcomes. In addition, uncontrolled seizures are associated with sudden unexpected death in epilepsy. Using statistics, we can extrapolate from individuals to populations to estimate the overall cost to society of seizure disorders. But patient experiences, sometimes buried beneath a simple call for help, can serve in a deeper way to bring forth issues that affect health outcomes.
The Epilepsy Foundation, at its core, serves as the reflective voice of individuals living with epilepsy. We reflect patient experiences and examine them for clues as to how to respond more effectively. The sense of urgency in the stories informs the Epilepsy Foundation’s advocacy efforts as well as policy makers’ perceptions and decision-making. The experiences of individuals influence the promotion and distribution of new and available treatments and the development of new therapies. The Foundation as an organization embodies these experiences.
However, help in the form of advocacy is not always as easy to deliver as it may seem. The message might be loud and clear within our community, but roadblocks often prevent the delivery of effective treatment. Helpful programs and treatments are at times not able to be implemented; relevant research is not pursued because it lacks support, or even because it is forbidden by legislation or delayed by bureaucratic processes. The story of Medical Marijuana is a good example of the complexities of these issues. Parents watching their children suffering from intractable seizures desire, deserve and expect some treatment that will stop seizures. The experiences patients and parents relate to health care providers elicit greater efforts to help. However, medical professionals are also concerned about the safety and efficacy of any drug or other treatment they prescribe, and they know that time-consuming research is critical. Thus the debate is framed: desperate calls for help and the need for dispassionate research. Point and counterpoint. Long-term, it is just this kind of tug-of-war that helps promote, advance and implement safe and effective treatments more quickly. The need, attested to so profoundly by patients and parents, drives new therapy development. And the greater the need, the more quickly new therapies are developed. In the case of research into the use of medical marijuana, however, society itself plays a pivotal role, and research has been bound up in conflict.
The Epilepsy Foundation has taken a position regarding medical marijuana for the treatment of epilepsy. We strongly support research into its potential use for individuals living with intractable epilepsy, and we advocate for its use when all other available therapies have failed. At the same time, we believe that patients and their physicians should be allowed make medical decisions regarding any treatment, including medical marijuana. The Foundation understands the need for research as a basis for care and treatment, and we support that effort by leading the advocacy effort nationwide for the right of doctors to conduct research and we are the leading organization directly funding new research in medical marijuana. But we also stand for patients’ rights, including the right to receive unconventional treatment under a physician’s care.
Medical Marijuana is certainly not the first controversial issue that the Epilepsy Foundation has addressed and it will very likely not be the last. One thing that will remain consistent is our focused energy and efforts on the principal of promoting the rights of patients and families. We will always serve to provide a voice for individuals and families and we will always serve as an advocate for people fighting epilepsy.
References:
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In Epilepsy & Behavior; June 2015; 47: 72.
Reprinted with permission from Epilepsy & Behavior, Elsevier for Editorials.
