On September 21 and 22 I attended the Rally for Medical Research in Washington DC, as a representative of the Biophysical Society. We visited legislators with the request to fund the National Institutes of Health at a $34.1 billion level for the coming fiscal year, a $2 billion increase from the present year, and to argue for sustainable and robust increases for out years to ensure continued momentum in supporting foundational research and translating those results into cures.
The Rally was dramatically unlike other scientific meetings that I go to. There were some scientists there, like me. And Ellen Weiss was there from the Biophysical Society staff and staff from other biomedical science organizations. But we were all there in support of the patients who came to urge their legislators to support NIH. There were pancreatic cancer survivors, of whom there are far too few. There were people living with hydrocephalus, who had undergone twenty or more surgeries to maintain appropriate fluid flow in their brains. A mother of a child with hydrocephalus. An older man who had received a lung transplant, the only available treatment for pulmonary fibrosis. A young woman who is at high genetic risk for developing pulmonary fibrosis, because of her family history. The list goes on and on. Each story is different, but a common thread connects them. For each of these diseases, research at the NIH provides a foundation on which to base a reasonable hope for a cure.
The patient whom I got to know best, because the accident of geography led us to the same schedule of office visits, was Ginger. Ginger is a single mother with a 13 year old daughter. She has lived for four years with Stage 4 lung cancer, through a series of clinical trials. We went to Senate offices in the morning and House in the afternoon. During the afternoon coffee break Ginger was exhausted, having had therapy the previous day and flying in to DC the previous evening. But in the congressional office she stiffened up and her voice was firm. She was on a mission.
In the offices I presented myself as a patient, a parent, and a researcher. As a patient I have benefited from NIH supported research that led to the understanding of the regulation of smooth muscle governing intraocular pressure, and led in turn to the chemical nature of the eye drops that are preserving my sight. NIH-supported research has also informed the pattern of treatment of my prostate cancer, I am sure to my benefit. As a parent however, I became tragically aware that there is as yet neither curative nor palliative effective treatment for Frontotemporal Dementia, with the result that my wife and I helplessly watched our son move from happy, successful, mid-40’s to death in a little over two years. As a researcher I talked of my hope that the computational work we are now doing on binding affinities of mutated virus coat proteins with complementarily mutated antibody fragments will lead to the ability to rapidly redesign synthetic antibodies to combat evolving pathogenic viruses.
I believe we may be at a turning point in congressional support for the NIH. In one office where we received a cool reception last year, this year the member not only expressed support for us but opened up about the health crises that his mother and his wife had encountered. Every office that I visited seems to finally get the story: The NIH pipeline of basic research, translational research, and clinical research lengthens lives and improves the quality of lives.
It would be great if everybody who reads this would write to your Congressional Representative and your Senators, telling what the NIH has done for which you and your family are grateful, and what you hope the NIH will be able to do in the future if there is enough support.