For the second consecutive year, the appropriations committees of both houses of Congress have approved specific language written by The Neuropathy Association urging the National Institute of Neurological Disorders and Stroke (NINDS) to strengthen its research portfolio for peripheral neuropathy. The language is part of a report that will accompany legislation appropriating more than $1.5 billion for the agency’s FY2006 budget.
NINDS, which is part of National Institutes of Health (NIH), supports and conducts basic and clinical neurological research and training to improve the prevention and treatment of neurological disorders. Its mission encompasses more than 600 neurological disorders, relatively few of which are ever singled out for special attention by Congress.
Sharply curtailed domestic spending by the federal government is exacting a heavy toll on medical research. The NINDS budget is likely to increase by no more than the current rate of inflation or about three percent. The House of Representatives proposed a paltry increase of just seven-tenths of one per cent! An increase of three per cent or less will require NINDS to divert funding from other research in order to bolster its neuropathy research.
NINDS recently reported to Congress that it is spending $50.1 million this year on neuropathy research substantially less than it spends on a number of neurological disorders that affect far fewer people. NIH spends the equivalent of $2.55 for every American with neuropathy. By comparison, the 400,000 sufferers of a comparable illness, multiple sclerosis, get $250.00 per patient: l00 times as much. Epilepsy research receives $37.00 per patient.
As we try to make up the ground lost as a result of our illness being ignored for so long, the mountain we must climb for research funding just keeps getting steeper,” said Dr. Donald G. Jacob, The Neuropathy Association’s Executive Director.
To foster greater interest in neuropathy research, NINDS has informed Congress that it is putting together a workshop of distinguished scientists to devise a set of research goals. This initiative was proposed by The Neuropathy Association during a meeting with NINDS officials.
The language prepared by The Neuropathy Association and approved by the House and Senate is as follows:
Peripheral Neuropathy - As many as 20 million Americans suffer from
peripheral neuropathy, a neurological disorder that causes debilitating
pain, weakness in the arms and legs, and difficulty walking. Peripheral
neuropathy affects approximately one-third of diabetics, or about 5.1
million persons, while other forms of neuropathy are inherited; associated
with cancer, kidney disease or infections like hepatitis, HIV/AIDS or Lyme
disease; or caused by autoimmunity, traumatic injuries, poor nutrition,
toxins and certain medications. While significant research is underway on
diabetic neuropathy and HIV/AIDS-related neuropathy, the Committee strongly
urges NINDS to strengthen its research portfolio on other forms of
neuropathy. The Committee is pleased to learn that NINDS plans to convene
a workshop with distinguished scientists to identify research goals aimed at
expanding the research knowledge base and identifying potential therapies.
