Why the NEI is crucial

September 21, 2018

“The only difference between death and taxes is that death doesn’t get worse every time Congress meets.” - Will Rogers

“The only difference between death and taxes is that death doesn’t get worse every time Congress meets.” - Will Rogers

Fifty years ago, an event occurred that led to dramatic improvement in our understanding of how the eye works and how to treat eye disease. No, that event was not my becoming an ophthalmology resident (but I understand how you might think I am that old). And no, the event was not my becoming chief medical editor of Ophthalmology Times (it only seems like forever that you have been forced to tolerate these columns of mine).

Creation of institution

Rather, the event to which I refer is the creation of the National Eye Institute (NEI) within the National Institutes of Health.

At a time when members of Congress routinely worked across the aisle, our elected representatives became educated to the fact that although Americans feared loss of vision second only to cancer when it comes to health, very little federal research funding was being directed toward addressing eye disease.

The education of our elected representatives did not occur by accident. Rather it resulted from concerted efforts of leaders from academia, professional societies, industry, and charitable organizations who shared concerns over the increasing numbers of blind Americans and the lack of appropriate research to stop or reverse this trend.

Prior to the NEI’s formation, scientists wishing to study eye disease might apply to another one of the institutes within NIH, such as the National Institute of Neurological Diseases and Blindness. “After all,” went the thinking, “isn’t the eye part of the brain?”

Predictably, review panels composed of large numbers of neurologists or neuroscientists with no experience in eye disease did not consider eye research a priority in comparison with neurological diseases.

NEI’s creation by Congress represented the firing of a starter’s pistol when it came to making major investments in the study of eye disease. Federal funding for research has paid dividends to American taxpayers by improving our understanding of the pathogenesis of eye diseases.

These funds have resulted in better therapies or provided the scientific basis for industry to find drugs/devices to address the targets identified in federally funded research labs. In retinal diseases alone, think of the argon laser, anti-VEGFs, OCT, and more.

Importance of funding

The track record of NEI-supported research is impressive. Still, polls of Americans rank fear of blindness as a top healthcare concern across all racial and ethnic groups.

The Alliance for Eye and Vision Research (AEVR) was founded 25 years ago to educate Americans about the importance of funding for research into eye disease. Privately funded by professional organizations, private foundations (such as Research to Prevent Blindness) and industry (you can guess the names), AEVR’s three founding members are the American Academy of Ophthalmology, ARVO and AUPO (the organization of ophthalmology department chairmen).

AEVR allows all of its member organizations to speak with one voice about the need for research that will lead to the improved drugs and devices that we ophthalmologists need to better care for our patients. (Full disclosure: Since 2013, yours truly has served as President of AEVR).

Surprisingly, a decade or so ago the proposal was raised of eliminating the separate NEI budget and folding it into a “Brain Institute.” Harkening back to the old days, researchers wanting to understand eye disease would have had their grants graded by neurologists and others with little to no knowledge of eye disease. Fortunately, this proposal did not gain traction. This step back in time failed, I believe, at least in part to the educational efforts of AEVR, which emphasized the potential loss of critical front-of-the-eye research.

Like Will Rogers, you might occasionally make fun of Congress. But the creation of the NEI augured a half century of stunning progress in understanding eye disease and better care for patients.