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Dr. Collins Cites NEI-Funded Human Gene Therapy at House and Senate Hearings on FY2011 NIH Funding

Legislative Update
May 13, 2010


NIH Director
Francis Collins, M.D., Ph.D.
On April 28 and May 5, respectively, the Labor, Health and Human Services, and Education (LHHS) Subcommittees of the House and Senate Appropriations Committees held hearings on Fiscal Year (FY) 2011 National Institutes of Health (NIH) funding, featuring primary witness NIH Director Francis Collins, M.D., Ph.D.

Early in his testimony at both hearings, Dr. Collins played a video entitled "Corey’s story," which featured a recipient of human gene therapy for Leber Congenital Amaurosis (LCA) navigating a maze unsuccessfully prior to the procedure, then successfully after the procedure. This research, funded by the National Eye Institute (NEI) in conjunction with private funding organization Foundation Fighting Blindness at Children’s Hospital of Philadelphia, was featured in a June 2008 Alliance for Eye and Vision Research (AEVR) Congressional Briefing. The research received such prominence at the recent appropriations hearings that NAEVR has written to Dr. Collins thanking him for featuring it. NAEVR also informed him that the vision community was subsequently represented by Neil Bressler, M.D., who testified on behalf of increased FY2011 NIH/NEI funding, at the May 12 House "Citizen's Witness" hearing.

Regarding the earlier hearings with Dr. Collins, the April 28 House hearing is now memorable for two reasons-it was Dr. Collins’ first appropriations hearing as NIH Director (he appeared previously as Director of the National Human Genome Research Institute within NIH), and it will likely be Chairman David Obey’s (D-WI) last with Dr. Collins regarding appropriations, since he recently announced that he will not seek re-election. Chairman Obey praised Dr. Collins as being "the right person in the right place at the right time" to lead NIH through the post-American Recovery and Reinvestment Act (ARRA) timeframe and to expedite the translation of basic research into treatments. In that regard, Dr. Collins noted that NIH has done the best job that it could to prepare for a reduced post-ARRA funding level, while adding that his top five priorities include efforts to expedite the translation of basic research, as well as taking advantage of opportunities in genomics, global health, research that supports heathcare reform, and efforts to reinvigorate the biomedical research enterprise.

As expected at the hearing, both Democratic and Republican members of the Subcommittee praised NIH while noting that an FY2011 funding increase would be very tight (as a point of reference, the President’s budget proposed a $1 billion or 3.2 percent increase for NIH). Bipartisan questions also focused on the impact of recent healthcare reform legislation. Most Republican members expressed concern that comparative effectiveness research, which has expanded greatly at NIH with ARRA funding, could lead to rationing. Both sides of the aisle questioned whether the Cures Acceleration Network (CAN), authorized by Congress at $500 million but not yet appropriated funds, could assist NIH in "crossing the Valley of Death from bench to bedside," that is, the rapid translation of basic research into treatments. Dr. Collins noted that the Institute and Center (I/C) Directors were to have a retreat the next day to address this issue. While commenting favorably on the great flexibility within the CAN model to alter research directions to address the most promising routes, he did caution that it is "high risk, high reward" research that is not funded.

At the May 5 Senate hearing, there was extensive discussion of the impact of CAN and how it would be funded via-a-vis overall NIH funding. At the outset of the hearing, Chairman Tom Harkin (D-IA) noted the tight budget environment, stating that the Subcommittee will be forced to make "tough decisions…and some of our friends are not going to be very happy with some of the decisions we make." Later, with respect to CAN, Senator Harkin expressed his frustration over how this program could be funded without taking funding away from I/Cs. Senator Arlen Specter (D-PA), the primary CAN sponsor, committed to finding the $500 million in appropriations to fund it, the level at which it was authorized in legislation.

At both hearings, Dr. Collins cited a new NIH document entitled NIH… Turning Discovery into Health, which features NEI-funded research into age-related macular degeneration (AMD), including the genetic basis of the disease and associated prevention strategies.

On April 12, NAEVR filed written testimony with both the House and Senate LHHS Appropriations Subcommittees urging FY2011 NIH funding at $35 billion and NEI funding at $794.5 million.