The Importance of the Paralysis Resource Center
Testimony of Matthew Reeve, Christopher & Dana Reeve Foundation to the United States Senate Subcommittee on Labor, Health and Human Services, Education, and Related Agencies Committee on Appropriations Addressing Funding for the Centers for Disease Control and Prevention
In April, Matthew Reeve submitted written Congressional testimony to the Senate Appropriations Labor Health and Human Services Subcommittee on behalf of the Foundation. This Committee is responsible for funding the National Center on Birth Defects and Developmental Disabilities (NCBDDD) which supports the Paralysis Resource Center. Matthew's testimony speaks to the importance of the Paralysis Resource Center for the paralysis community, and highlights the impact that consolidation of disability programs supported through the NCBDDD would have on our community.
The following is Matthew's full testimony from April 25, 2012.
Senator Harkin, Ranking Member Shelby and Members of the Subcommittee, thank you for the opportunity to submit testimony in support of funding for the National Center on Birth Defects and Developmental Disabilities (NCBDDD) within the Centers for Disease Control and Prevention, as well as on the importance of a strong federal investment in medical research at the National Institutes of Health (NIH).
I am Matthew Reeve, the eldest son of Christopher Reeve, and I have served on the Board of the Christopher & Dana Reeve Foundation since 2006. I also serve on the Foundation's Quality of Life Committee, which funds programs across all fifty states and around the globe to help people living with paralysis become more fully integrated members of society.
The Foundation is dedicated to both curing spinal cord injury by funding innovative research and to improving the quality of life for nearly six million people currently living with paralysis and those that care for them. Since its inception, the Foundation has provided $100 million in research grants to more than 750 researchers, and has provided over $15 million to almost 2,000 organizations across the country through our Quality of Life grants program.
It is a priority of the Reeve Foundation to ensure that individuals living with spinal cord injury and paralysis have access to the resources and tools necessary to live life to their fullest abilities. When my father suffered his injury in 1995, the world was a different place for those living with a spinal cord injury. I was 15 years old at the time of his accident, and I remember those first few weeks after his injury very clearly. I will never forget the sense of helplessness that we all felt, coupled with the knowledge that in an instant my father's life, as well as that of our entire family, had changed forever. Being active one day, and immobile the next, thrusts you and your family into an entirely new existence. Every day we found that there were more questions to be answered yet information and services were limited and difficult to locate. The unanswered issues we faced were outside the expertise of the doctors, nurses and staff at the Intensive Care Unit. We felt that we had nowhere to turn. Following our family's experience, my stepmother Dana was determined to do whatever she could to ensure that other families did not encounter the same problem.
Led by her charge, over the past ten years the Reeve Foundation has created a national resource center to help individuals and their families navigate a complicated health care system and to provide them with the tools and information they need to lead a productive and fulfilling life. The Paralysis Resource Center (PRC) funded through the NCBDDD, partners with organizations across the country to offer programs that promote independent and healthy living for all individuals living with paralysis. Currently, the PRC provides services to over 500,000 individuals annually, and is indispensable in providing vital information and services that the paralysis community depends upon each day. The PRC provides patients with access to state-of-the-art therapies focused on improving health and mobility; guidance for evaluating rehab facilities and redesigning a home to make it wheel chair accessible; referrals to community support programs; and information and resources on a full range of topics related to paralysis and issues that arise from secondary complications.
The Foundation is extremely proud of the infrastructure that has been built through support from NCBDDD, as well as the programs that serve the disability community beyond spinal cord injury and paralysis. NCBDDD was established by Congress in 2000, and is the only entity within the Federal government that focuses on the specific needs of many of our nation's most fragile populations. The Foundation is very concerned about both the funding and structure of the Center in the President's budget. The President's Fiscal Year 2013 budget recommends a funding level of $126 million, a decrease of $11 million, for NCBDDD. To achieve these reductions, CDC has indicated that they plan to focus on cutting research, resource, surveillance programs, and information centers. These programs are a critical component of our nation's public health infrastructure, and cutting them puts the infrastructure we have worked so hard to create at great risk. Second, in an effort to create efficiencies and cost savings, the President's budget proposes consolidation of funding for federal agencies, including the CDC. Within the CDC is a proposal to consolidate the ten disability programs' funding lines that fall under the NCBDDD Division of Human Development and Disability into one.
Last year, a similar consolidation of NCBDDD was proposed in the President's budget. In response, and under your leadership Chairman Harkin, Congress included Report language in the FY12 LHHS Appropriations Subcommittee Conference Report rejecting the proposed consolidation and directing the CDC to conduct a needs assessment before moving forward with future consolidation proposals. Members of the disability community came together to work with Congress to stop consolidation from moving forward because we knew that consolidation of disability programs funded through NCBDDD would be devastating not only for the spinal cord injury and paralysis population, but for the entire disabled community. We are grateful for the support shown by you, Chairman Harkin, and your Subcommittee. However, despite the Congressional direction, consolidation is back in this year's budget and is not accompanied by the Conference Committee's requests.
On behalf of the Christopher & Dana Reeve Foundation, and the nearly six million individuals affected by spinal cord injury and paralysis, I ask that this Subcommittee once again reject the proposed NCBDDD consolidation included in the President's budget and direct CDC to conduct a needs assessment which reflects the impact of consolidation on the disability groups represented by NCBDDD.
Programs funded through the NCBDDD are making an active difference in the lives of millions of individuals living with a disability. For the paralysis community, funding for the PRC is essential in the day-to-day lives of thousands of individuals living with paralysis. I am incredibly grateful for the ongoing support this committee has shown the disability community and for the relationships we have built on behalf of the Foundation.
A core mission of the Reeve Foundation is to invest in research to develop effective treatments for acute and chronic spinal cord injury. But we cannot do it alone. A strong federal investment in medical research at the NIH is critical in the quest for better cures and treatments for the paralysis community. The Foundation supports an appropriation of $32 billion for NIH in fiscal year 2013. The NIH funds some of the most groundbreaking research in the areas of spinal cord injury and paralysis and a strong federal investment is critical so we can achieve our shared goal.
NIH grants have supported the basic science of locomotor training and advanced the current research being conducted in epidural stimulation. NIH has also funded the Tongue Drive System, which is a wireless device that enables people with high-level spinal cord injuries to operate a computer and maneuver an electrically powered wheelchair simply by moving their tongues. These are examples of how NIH is turning research into reality and changing the lives of those living with paralysis. We need the support of this Subcommittee to ensure that NIH receives the necessary funding to continue to advance this critical research.
As you move forward with the budget process we look forward to working with this Subcommittee to stop consolidation of the NCBDDD until the impact of the consolidation on the communities served by NCBDDD is addressed, as well as ensuring a strong federal investment in medical research at the NIH.
Thank you again, Mr. Chairman, for the opportunity to submit my testimony on behalf of the Foundation.