Witness Testimony of Carl Blake, Paralyzed Veterans of America, National Legislative Director
Mr. Chairman and members of the Subcommittee, Paralyzed Veterans of America (PVA) would like to thank you for the opportunity to testify today on the research programs conducted by the Department of Veterans Affairs (VA). Research is a vital part of veterans’ health care, and an essential mission for our national health care system. PVA is very involved in many aspects of medical and prosthetic research because of the long-term impact that these initiatives can have on our members.
The VA health care system is a unique environment combining clinical care, education, and research. VA currently supports approximately 3,800 researchers at 115 VA medical centers. The research program serves as an excellent recruitment tool for young doctors as well as scientists because it gives them an opportunity to develop skills as clinical researchers. According to the VA, nearly 83 percent of VA researchers are practicing physicians. Because of this dual role, VA research often immediately benefits patients. For example, functional electrical stimulation, a technology using controlled electrical currents to activate paralyzed muscles, is being developed at VA clinical facilities and laboratories throughout the country. This technology is now being applied to many PVA members receiving health care service and rehabilitation therapy at spinal cord injury centers. Through this technology, tetraplegic patients have been able to grasp objects, stand and pivot to assist transfers, and control bladder function. We anticipate greater capacity for even walking short distances.
PVA interacts a great deal with the VA’s Office of Research and Development. Most of our attention is focused on the Rehabilitation Research and Development (RR&D) and Health Services Research and Development Service (HSR&D). RR&D projects involve technologies such as wheelchair development and testing, seating systems, functional electrical stimulation (FES), audiology, prosthetics and orthotics, and other components. HSR&D projects are multidisciplinary activities that involve expertise in a combination of clinical fields—physicians, nurses, therapists—as well as social sciences—psychology, sociology. It involves delivery system research and application. This particularly involves the Quality Enhance Research Initiative (QUERI), which includes spinal cord injury (SCI). PVA’s Research Department has been a direct participant in the QUERI executive group as well as the SCI QUERI since their inception.
Meanwhile, the Clinical Sciences Research and Development Service (CSR&D) conducts clinical trials and epidemiological research on key diseases that impact veterans. CSR&D research project accomplishments include key research findings across a range of diseases and definitive evidence for clinical practice.
Through the system’s scope of primary, secondary, and tertiary care, as well as long-term care, with multi-disciplinary academic affiliations, the VA brings validation and innovation to the delivery of the best care for today’s veterans. Perfect examples of this idea are the Parkinson’s disease Research Education and Clinical Centers (PADRECC) and Multiple Sclerosis (MS) Centers of Excellence. These centers represent a successful strategy to focus the Veterans Health Administration’s (VHA) system-wide service and research expertise to address two critical care segments of the veteran population. They integrate direct health care services, education, and research to the benefit of veterans in the system.
In testimony during the 109th Congress, PVA supported legislation that would create Amputation and Prosthetic Rehabilitation Centers of Excellence (similar to those for MS and Parkison’s disease). The need for these centers is amplified by the number of veterans of Operation Iraqi Freedom (OIF) and Operation Enduring Freedom (OEF) who have amputations. As we stated with regards to the Parkinson’s disease and MS Centers of Excellence, the VA has the essential expertise to focus dedicated services on a wide range of medical conditions. It then transfers learned approaches for specific care to the broader VA health care system. However, the Veterans Health Administration (VHA) often times lacks the financial wherewithal to create a needed focal point or center. This legislation calls for the creation of these focal points and the need for resources to actuate that goal. We must emphasize, however, that additional real dollars will likely be needed to establish these centers.
Furthermore, these centers could partner with the new Amputation and Prosthetic clinic recently opened at Walter Reed Army Medical Center. This partnership could enhance the long-term provision of these services to veterans as it would allow the VA to remain on the cutting edge of amputation and prosthetic research in conjunction with DOD. This is particularly important as the VA will likely be responsible for caring for the men and women with prosthetic needs over the course of their lives.
Additionally, VHA should be required to partner with manufacturers, dealers, payers, and advocates to develop performance test standards for amputee and prosthetic devices. An example of these types of test standards is the American National Standards Institute (ANSI) and Rehabilitation Engineering and Assistive Technology Society of North American (RESNA) Wheelchair Performance Standards. These standards are a collaborative effort with specific impacts on wheelchair research and development, consumer disclosure, and payer decisions. PVA believes that these centers could be the spearhead for development of evidence-based performance test standards for amputee and prosthetic devices. Furthermore, expertise on these matters could be drawn from such projects as the VA’s Human Engineering Research Laboratories (HERL), a project being conducted in collaboration with the University of Pittsburg and supported by PVA’s Research Foundation, and focused on mobility technologies.
PVA has a particular interest in research projects that the VA administers as it continues to address neurotrauma and sensory loss, primarily as a result of spinal cord injury or disease (SCI/D) or traumatic brain injury (TBI). As you are well aware, traumatic brain injury is recognized as the signature injury of combat in Iraq and Afghanistan. According to the VA’s estimates, TBI and various degrees of SCI account for nearly 25 percent of the combat casualties sustained by service members in OIF/OEF. Despite the positive gains by advancements in body armor, the head (and by extension the brain), as well as the cervical spine, are exposed to significantly more trauma. This has not only lead to specific injuries related to TBI and paralysis, but also vision loss, psychological problems, and the larger polytrauma aspect.
As such, it is absolutely essential that continued research in the areas of TBI and SCI continue to advance. PVA has long been a leader in the field of spinal cord research. Through the PVA Research Foundation, we continue to work to find a cure for SCI/D and alleviate the effects of similar conditions. Through the PVA Education Foundation, we develop tools to share the broad-based knowledge for SCI/D care with all types of health care professionals. Finally, PVA, as a partner in the Consortium for Spinal Cord Medicine, promotes the use of evidence-based clinical practice guidelines and consumer guides. PVA also supports numerous efforts in the field. For example, at the Center for Neuroscience and Regeneration Research at Yale University, scientists study nerve regeneration that may ultimately lead to better treatments for SCI or possibly even a cure. This work is conducted in conjunction with the VA.
Likewise, PVA believes more research must be conducted to evaluate the symptoms and treatment methods of veterans who have experienced TBI. This is essential to allow VA to deal with both the medical and mental health aspects of TBI, including research into the long term consequences of mild TBI in OEF/OIF veterans. Furthermore, TBI symptoms and treatments can be better assessed for previous generations of veterans who have experienced similar injuries.
PVA also supports a couple of specific research projects that the VA instituted during FY 2007. The first project focuses on the special needs of service personnel returning from Operation Iraqi Freedom (OIF) and Operation Enduring Freedom (OEF). The project will develop new treatments and tools for clinicians to ease the physical and psychological pain of men and women returning from the combat theaters, improve access to VA healthcare services, and accelerate discoveries and applications, especially for neurotrauma, sensory loss, amputation, polytrauma, and related prosthetic needs. We appreciate that even as the VA begins to move forward with this project, it is already collecting data to determine if the health care needs of amputees and severely injured veterans from OIF and OEF are being met and to identify areas where improvement is needed. These data will help focus the project on additional areas that need to be studied.
This project directly supports the important role that research plays in the clinical setting. Through this project clinicians can learn and apply new tools to the treatment of physical and psychological conditions experienced by the men and women returning from the Global War on Terror. Furthermore, findings from this research project can be shared with Department of Defense (DOD) treatment facilities, particularly Walter Reed Army Medical Center and Brook Army Medical Center, as well as the Defense Advanced Research Projects Agency. This collaboration will be absolutely essential as it will provide for new screening tools, clinical applications, and long-term follow-up.
As a member of the Friends of VA Research (FOVA) coalition, we wholeheartedly support the vision to expand the VA research program to encompass the needs of service personnel returning from current conflicts, whether they include polytrauma, massive burn injury, or mental health conditions. Such expansion of the program requires new resources so that VA’s other research areas, which are equally important to the long-term care of veterans, do not suffer.
The second special research project focuses on genomic medicine. The thrust of this project is to link veterans’ genetic information with the VA electronic health record. The program will ultimately allow clinicians to make better decisions for veterans based on their genetic information. Furthermore, it will address patients’ rights, informed consent, privacy, and ownership of genetic material involved with genetic tissue banking. We believe that the human genome reports of recent years have provided a strategy to integrate clinical symptomology with genetic testing to create a predictive model that could extend health care delivery to a truly preventive service.
However, despite the expectations of this exciting field, we must reiterate that additional new funding will be necessary. Genomic medicine cannot be advanced by simply reshuffling funding priorities within existing VHA R&D funding. If it is placed into a stream where it will compete with current VA projects, the sheer scope and cost of genomic medicine will overrun all other ongoing projects. This will simply not be a cheap field to study, so the burden should be shared by the Veterans Health Administration (VHA) and DOD. Moreover, the genomic priorities of NIH should be marshaled with VHA.
PVA also believes that one particular change should be made that would allow the VA to invest additional resources into its infrastructure. Currently, many VA researchers are primary grantees from the National Institutes of Health (NIH). However, these researchers do not receive any funding to support management and physical plant costs of their projects. Their physical infrastructure and administrative costs (also called indirect costs), which are vital to the support of the research enterprise, are not funded by NIH to VA researchers. However, if that same VA researcher carries that same grant through an academic affiliate, then NIH would provide full indirect support. If the VA is going to attract clinician researchers, they must provide the best environment; otherwise, they are placed at a significant competitive disadvantage. Simply put, Congress must provide funding for capital improvement and support the VA research enterprise or NIH should be required to pay fair indirect costs to the VA.
Finally, I must emphasize our concern about funding for the overall Medical and Prosthetic Research program. We certainly appreciate the fact that the appropriations bills passed by the House and Senate meet or exceed the $480 million that The Independent Budget calls for in FY 2008. However, with the outcome of the appropriations still hanging in limbo, and the fact that no appropriation has been provided even as the start of the new fiscal year has passed, we remain concerned about the ongoing viability of the VA research program. It is time to put the games aside and complete the appropriations work that these programs so vitally rely upon.
Mr. Chairman, PVA appreciates your continued interest in maintaining a viable research program. We look forward to working with the Subcommittee to ensure that adequate resources are provided for Medical and Prosthetic Research. Quality research outcomes can only lead to better patient care for veterans.
Thank you again. I would be happy to answer any questions that you might have.