The Power Among Us

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dawn mancusoIn the last few weeks, I have been privileged to represent the hydrocephalus community at a number of interesting and important events having to do with chronic medical conditions. The first of these was the Voluntary Health Leadership Conference, an annual event hosted by the National Health Council (NHC). NHC is an organization that represents the over 133 million people with chronic conditions/diseases and their families, through the 50 patient advocacy groups who are members of the NHC. This conference featured presentations by notable government officials
such as: Dr. Story Landis, Director of the National Institute for Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH), the U.S. government agency responsible for funding much of our nation’s medical research; and Dr. Margaret Hamburg, commissioner of the U.S. Food & Drug Administration (FDA), the agency responsible for approving medical drugs and devices before they go to market. The conference offered a marvelous opportunity to get updated on the latest legislation being debated in Congress. I also benefited, as will all of HA, from the lessons learned and shared by leaders of other disease-focused organizations about what has worked (and not worked) in their operations.

The second meeting was the Rare Disease Day Conference held on the NIH campus. Presented by the Office for Rare Diseases Research at the National Center for Advancing Translational Sciences (known as NCATS) and the NIH Clinical Center, this two-day symposium celebrated rare disease research efforts across NIH, the Federal Government and the patient advocacy community. HA Research Programs Manager Ashly Westrick and I participated in discussions as far reaching as the work being done by the Department of Defense (DOD) to develop “human organs on chips” for use in drug screening and toxicity assessment; updates on the Global Rare Disease Patient Registry Data Repository; and patient-centered outcomes research at the Agency for Healthcare Research and Quality (AHRQ).

Attending both of these events has given our organization a higher profile among policy makers and key research agencies, and has helped HA play an important role representing the entire hydrocephalus community in national conversations about the future of chronic disease research. Now, as I think back on the two conferences, I also see that they are symbolic of an impressive sea-change in the role patients now play in directing their own care and in demanding resources be applied to the development of new treatments. We see it when we note that the recent healthcare reform legislation created the Patient-Centered Outcomes Research Institute (PCORI). We see it whenever we go into a hospital today and find that the hospital has posted a “Patients’ Bill of Rights” on the wall. We see it at meetings of the FDA, the NIH, the DOD, and other agencies where seats are regularly being held open for and filled by patient advocates. (HA’s own Past Chairman Paul Gross currently sits on the NINDS Advisory Council.) We saw it again just a few days ago when President Obama issued a White House Directive to federal agencies conducting research to develop and implement policies for increasing public access to published research that was funded with taxpayer dollars. Moreover, this directive supports the FASTR bill (The Fair Access to Science and Technology Research Act) currently under consideration by Congress.

This year, we are proudly celebrating the Hydrocephalus Association’s 30th anniversary. Back in 1983, HA’s founders and original members were on the cutting edge of a patient advocacy movement that clearly has come a long way in three decades. There is still much to be done, but reflecting on how much progress has been made should bolster our optimism about how much more we can do together. Few have said it better than the famous American scientist, Margaret Mead:

“Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

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