8
STATE PROGRAMS IN SPINAL CORD INJURY

More than one-quarter of the states in the United States have passed legislation creating programs expressly devoted to spinal cord injury research. Most state programs, launched in the late 1990s, represent an important new trend in which state legislatures channel funds to a particular area of health research. However, there is nothing new about states investing in research.

For more than three decades, state governments have carved out a role for themselves in supporting research within their borders. States’ total research and development spending for all areas of science and health was approximately $88 million in the mid-1960s. By 1995 that spending had surged to $3 billion nationwide (Jankowski, 1999). The prime motivations behind state investments in research have been to propel economic growth and to improve the health of their citizenries (SSTI, 1997, 1999a; Jankowski, 1999).

This chapter examines state programs for spinal cord injury research to determine how they are structured and how states—as well as researchers—stand to benefit from their creation. It then looks in depth at three spinal cord injury programs that have successfully leveraged the funds received from their own states to draw in much larger sums in federal research funding. The goal is to set the stage for the chapter’s final section on New York State. That section examines the unique strengths of New York State’s institutions and researchers in neurological, basic, clinical, and translational research on spinal cord injuries and offers recommendations on what distinctive contributions New York’s spinal cord injury research program can make to accelerate the search for improving the outcome after a spinal



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Spinal Cord Injury: Progress, Promise, and Priorities 8 STATE PROGRAMS IN SPINAL CORD INJURY More than one-quarter of the states in the United States have passed legislation creating programs expressly devoted to spinal cord injury research. Most state programs, launched in the late 1990s, represent an important new trend in which state legislatures channel funds to a particular area of health research. However, there is nothing new about states investing in research. For more than three decades, state governments have carved out a role for themselves in supporting research within their borders. States’ total research and development spending for all areas of science and health was approximately $88 million in the mid-1960s. By 1995 that spending had surged to $3 billion nationwide (Jankowski, 1999). The prime motivations behind state investments in research have been to propel economic growth and to improve the health of their citizenries (SSTI, 1997, 1999a; Jankowski, 1999). This chapter examines state programs for spinal cord injury research to determine how they are structured and how states—as well as researchers—stand to benefit from their creation. It then looks in depth at three spinal cord injury programs that have successfully leveraged the funds received from their own states to draw in much larger sums in federal research funding. The goal is to set the stage for the chapter’s final section on New York State. That section examines the unique strengths of New York State’s institutions and researchers in neurological, basic, clinical, and translational research on spinal cord injuries and offers recommendations on what distinctive contributions New York’s spinal cord injury research program can make to accelerate the search for improving the outcome after a spinal

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Spinal Cord Injury: Progress, Promise, and Priorities cord injury. Many of the chapter’s recommendations for New York State are also applicable to other states interested in setting or revising strategic directions for their spinal cord injury research programs. The states can learn much from one another to develop and strengthen their spinal cord injury research programs. STATE PROGRAMS AND LEGISLATION Since 1988, 14 states have passed legislation that has resulted in annual funding for spinal cord injury research of about $27 million (Table 8-1). TABLE 8-1 State Legislation Relevant to Spinal Cord Injury Research State Year Legislation Enacted Year Legislation Proposed but Not Enacted California 2000a   Colorado   2004a Connecticut 1999   Florida 1988 Illinois 2000a Indiana 1998 Iowa   2004a Kansas 2001 Kentucky 1994   Maryland 2000 Massachusetts 2004a Michigan   1989 Minnesota 2000a Missouri 2001   New Jersey 1999a New York 1998a Ohio   2000a Oregon 1999a   Pennsylvania   2000 South Carolina 2000   South Dakota   2003 Texas   1999a Virginia 1997   Washington   2004a aThe legislation specifically notes that research is conducted to cure spinal cord injuries. NOTE: The data were compiled in October 2004 and are based on a review of state legislature websites, searches on Lexis-Nexis, and telephone interviews. The table includes the year that the legislation was first enacted or considered (i.e., data on later years when the legislation was revised or considered are not included). Enacted legislation supersedes proposed legislation (e.g., legislation considered in 1996 but approved in 1998 is listed as enacted in 1998 and does not appear in the proposed legislation column).

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Spinal Cord Injury: Progress, Promise, and Priorities FIGURE 8-1 Percentage of total state spinal cord injury research funding for states with dedicated spinal cord injury research programs. Data for only 10 states are listed. Oregon, Illinois, and Connecticut do not have budgets for their programs. The Massachusetts program was approved in August 2004, and the budget amounts have not yet been specified. Another 10 states have proposed but have not yet enacted similar legislation. The surge in state legislation, which occurred from the late 1990s to 2001, reflects growing acceptance and awareness that motor vehicle crashes are the leading cause of spinal cord injuries. The concept behind most state legislation can be traced back to a pioneering 1988 Florida law that designated a set percentage of revenues from fines for unsafe driving for spinal cord injury care and research. Today, the amounts and the percentages vary, but the majority of the 14 states each spend at least $1 million each year for spinal cord injury research. New York State supports the program with the largest amount of state funding, $8.5 million per year (Figure 8-1). The structures and sources of funding vary among the state programs (see Appendix H). New York, for example, collects funds from a surcharge of $51 for traffic violations, whereas New Jersey adds an additional $1 to each motor vehicle or traffic violation fine. Some state programs, such as those in Florida, Indiana, and Kentucky, designate that the funds obtained 1   New York State Senate Introducer’s Memorandum in Support of S7287C (1998).

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Spinal Cord Injury: Progress, Promise, and Priorities from surcharges go to support specific university programs. Other states diversify the types of awards that they grant and allow any university-based researcher in the state to apply. South Carolina, for example, provides an estimated $1 million every 2 years for individual and small pilot research grants, career development awards, and faculty recruitment initiatives. Maryland also distributes $1 million annually for spinal cord injury research through a tax on health insurers. Several states have developed or contribute funding to extensive research centers, including the Miami Project to Cure Paralysis and the Kentucky Spinal Cord Injury Research Center (see below). Some states use their funds for patient care, in addition to research. The largest and most innovative state programs (see below) have used state funds as seed money to expand their programs’ sizes, scopes, and impacts by using their funds to support pilot projects that generate enough data to help them garner more state, federal, and private financing. BENEFITS TO STATES FROM THEIR INVESTMENTS In the aggregate, states invest billions of dollars each year on research and development across all fields of science and technology. Those state expenditures represent a consistent trend that began more than three decades ago. The earliest statistics, gathered in 1965, revealed that states collectively spent about $88 million annually on research and development. That amount rose to $3 billion in 1995 (Jankowski, 1999). These data were reported by the National Science Foundation, based on a 1995 survey of 1,000 state agencies and universities. The total is likely to be significantly higher today, almost a decade later, but no recent surveys have been conducted. What is known about state spending for research and development in general and biomedical research in particular? What motivates this investment? And what is the return on the investment? These questions are addressed in the next section. OVERVIEW OF STATE RESEARCH AND DEVELOPMENT SPENDING The 1995 survey found that the vast majority of the $3 billion in state research and development spending (73 percent, or $2 billion) went to academic institutions in each state. Most of the remainder went to state agencies (14 percent, or $408 million). Of the 73 percent distributed to academic institutions, the majority (67 percent) went to public universities, while the remainder was directed to private universities within the state (Jankowski, 1999).

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Spinal Cord Injury: Progress, Promise, and Priorities An overwhelming proportion of the $3 billion in state research and development spending was for research, as opposed to the physical plant infrastructure ($228 million). States typically financed their research and development expenditures from one of four sources: general revenues, lottery proceeds, revenue bonds, and specially designated tax funds. Another source, which accounted for about 9 percent of state spending, was from federal research dollars passed through state agencies (e.g., funding for state health department research from the Centers for Disease Control and Prevention). Revenue bonds floated by a state are commonly used to finance the research infrastructure, such as new construction and equipment (Personal communication, M. Skinner, State Science & Technology Institute [SSTI], November 11, 2004). These amounts are likely to be relevant to biomedical research because biomedical research accounts for a large share of the spending on research. Although the 1995 survey did not compile actual amounts by field of research, it did report that biological and medical sciences received the highest proportion of state funds, regardless of whether they were directed to academic institutions or to state agencies (Figure 8-2). Engineering and environmental sciences were ranked second and third, respectively. Since 1995, when the survey was conducted, a huge infusion of state funds to life sciences research has been obtained from a new source: state tobacco settle- FIGURE 8-2 State government research and development expenditures, by performer of the research and field, 1995. SOURCES: Battelle Memorial Institute/SSTI, 1998; Jankowski, 1999; National Science Foundation, 2004.

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Spinal Cord Injury: Progress, Promise, and Priorities ments (SSTI, 1999b). The tobacco industry agreed to pay $250 billion over the next 25 years to resolve Medicaid lawsuits filed by the states to cover their tobacco-related health care expenditures (Center for Social Gerontology, 2004). Many state legislatures have allocated their settlements to fund life sciences research more generally rather than smoking-related research per se. Motivation for State Spending on Research and Development State spending on research and development is largely driven by the quest for economic growth. The recognition of research and development as a growth engine became more apparent during the 1990s, when states increasingly began to incorporate expansion of their research and development capacities into their economic development plans (SSTI, 1997). An analysis of governors’ state of the state speeches, inaugural addresses, and budget speeches signaled a consistently high level of interest in expanding the state’s research and development capacity to promote economic development (Jankowski, 1999). In New York State, for example, Governor George Pataki spearheaded several research and development initiatives worth more than $500 million, including the formation of the New York State Office of Science, Technology, and Academic Research (NYSTAR). NYSTAR issued a report that attributes its creation as “reflect[ing] the recognition that New York’s world-class public and private research universities and academic centers are powerful economic development engines that can help create high-tech jobs and opportunity in New York” (NYSTAR, 2001). The following are some of the specific economic objectives that motivate most states to invest in research (SSTI, 1997, 1999a; Attorney General of California, 2004; Battelle Technology Partnership Practice/SSTI, 2004): to propel a state’s economic growth by strengthening the capacity of the state’s public and private universities; to attract additional investment from federal and private sources; to attract or retain home-grown businesses, investment capital, and high-paying jobs; to expand access to high-quality education and to cultivate an educated workforce; to encourage academia-industry collaborations to commercialize the goods and services that result from research; and to obtain revenues from patents, royalties, and licenses (Jankowski, 1999). During the past 10 or more years, states have increasingly begun to

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Spinal Cord Injury: Progress, Promise, and Priorities focus more specifically on biomedical research. In addition to the economic benefits listed above, states view the biosciences as a rapidly growing industry sector and as a means to improve the health of its citizens (Battelle Technology Partnership Practice/SSTI, 2004). In contrast to earlier efforts, which were more broad based, states are now targeting specific niches within biomedical research, such as spinal cord injury research. The motivation comes from several considerations: to accelerate research to improve health care services and quality of life; to reduce the high cost of care for recipients of assistance from state health programs (e.g., Medicaid) and state employees; to prevent injuries and improve motor vehicle safety; and to improve the health and productivity of the state’s entire workforce. Returns on the Investment Several high-profile studies have sought to quantify the economic and health benefits of state support for biomedical research and development in terms of job creation, the health care costs saved (e.g., the hospitalizations avoided), the value of an increased life span, and reduced morbidity and disability (Silverstein et al., 1995; Lasker Foundation, 2000). The overall cost savings derived from the economic and health benefits of support for biomedical research are estimated to be $69 billion annually (Silverstein et al., 1995). Although evaluation of these estimates is important and demanding, they are national in focus and do not specify the economic and health benefits to a given investor, such as a state or a local government. Several smaller studies, cited by Silverstein and colleagues (1995), have been conducted to assess the economic returns to states that invest in biotechnology. A Bank of Boston study found that 25.5 jobs were created for every $1 million spent on biotechnology research (Bank of Boston Economics Department, 1991; Silverstein et al., 1995). Similar benefits were estimated in California and Maryland (California Health Care Institute, 1993; Maryland Department of Economic and Employment Development, 1994). The most relevant study for the purposes of this report was conducted by a team of New York State-based university economists who, at the request of the New York Academy of Medicine, quantified the returns to New York State from investments in biomedical research (Sclar and Aries, 2000). The researchers surveyed 20 biomedical institutions within the state, covering 86 percent of the state’s population. They asked the institutions about the grants that they receive, grant-related expenditures, and institutional expenditures. They assessed the economic impact by applying an

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Spinal Cord Injury: Progress, Promise, and Priorities BOX 8-1 Economic Benefits to State or Local Governments Investing in Research For every $1 million invested, a state or local government can expect: 20 full-time jobs (including, directly, 12 jobs in research and, indirectly, 8 jobs induced by spending); about $50,000 to $100,000 in additional tax revenues to the state, mostly through income taxes; and additional research grants from the National Institutes of Health that reap additional jobs and tax revenues (the case studies in this chapter show at least a 200 percent return on investment). SOURCES: Aries and Sclar, 1998; Sclar and Aries, 2000. input-output economic model that can trace the effects of research spending on the economy (industries and households) of the region where the research took place. Apart from the direct effects of research funding (e.g., employee compensation and the purchase of goods and services), ripple effects came in two forms: the secondary expenditures of vendors whose businesses were stimulated by the institutional spending (i.e., indirect effects) and induced spending effects resulting from the increased household incomes that the cumulative chain of spending creates. The study found that research investment led to high payoffs in terms of well-paying jobs (an average compensation package of $115,000 per employee) and additional tax revenues from businesses, including excise taxes, property taxes, fees, licenses, and sales taxes, as well as income taxes to the state and federal governments. The magnitude of the effect is presented in Box 8-1. Advantages of State Programs for Studying Spinal Cord Injuries Testimony to the committee and interviews with scientific directors of state programs showed that state-sponsored spinal cord injury research programs offer several advantages to researchers: flexibility; the capacity to leverage more funding, especially for renovation or new construction; a steady form of financing (e.g., from motor vehicle surcharges); and a strong investment in the regional economy. Flexibility Flexibility is a major reason that researchers and institutions obtain funding from states. Grantees often use state funding for pilot studies that

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Spinal Cord Injury: Progress, Promise, and Priorities give them an edge to compete successfully for grants from the National Institutes of Health (NIH), which are highly competitive, lucrative, and prestigious. In each model program described in this chapter, funds from state or local grants were parlayed into the receipt of NIH grants of double or triple the value of the state or local grant. State funds have also been used to fill the gaps left unfilled by NIH grants. Examples include endowed faculty chairs (see the description below of the Kentucky Spinal Cord Injury Research Center), lecture series, and special fellowships. Flexibility in state funding enables researchers to pursue high-risk research or to capitalize on new and unexpected research directions. In sum, state funds not only are used to establish a program but also can be used as a building block. New Construction or Renovation State funding has been used, directly or indirectly, for renovation and new construction. Physical infrastructure not only is important for research in its own right but also is key to attracting new talent. The Miami Project to Cure Paralysis was able to build a $36 million building with partial state funding. The project obtained $10 million from the state as a one-time line item in the state budget that matched the funds that the project had raised from a private donor. The receipt of state funds for construction helped the program secure even more private funding. In this instance, state funds for construction were separate from the state’s annual fund for research and treatment for spinal cord injuries. States can finance construction by floating bonds. That was the preferred vehicle of financing listed in a survey reported by the National Science Foundation (see above). State-issued bonds will also be used by the state of California to finance the building of new facilities under its stem cell research initiative that was approved by voters in 2004.2 NIH rarely funds new construction through its extramural research program, although it does fund new construction for public health priorities, such as, most recently, biological defense. NIH construction grants also impose restrictions. They are normally capped at $4 million. In recent years the annual congressional appropriations for these grants, which represent funding for the Research and Facilities Improvement Program, has been approximately $110 million to $120 million (U.S. Senate Committee on Appropriations, 2003). A portion of NIH’s Centers of Biomedical Research Excellence3 grants ($500,000) can also be used for renovation. How- 2   California Codes Health and Safety. §125290.70(a)(4) (2004). 3   Centers of Biomedical Research Excellence grants are awarded through NIH’s National Center for Research Resources, which is authorized under Sections 481A and 481B of the Public Health Service Act, as amended by Sections 303 and 304 of P.L. 106-505, to “make grants or contracts to public and nonprofit private entities to expand, remodel, renovate, or alter existing research facilities or construct new research facilities.”

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Spinal Cord Injury: Progress, Promise, and Priorities ever, these grants are generally awarded only to those states that have historically been unsuccessful in competing for NIH grants. Furthermore, NIH infrastructure grants often require matching funds. Reliability State funding also provides a reliable and steady stream of resources if the funding comes from a dedicated revenue generator, such as fines for surcharges on motor vehicle violations. Stable funding enables multiyear planning, which is important for research continuity. Program directors in states that have yearly line-item appropriations rather than dedicated funding sources for spinal cord injury research emphasized the limitations of the year-to-year variability and the need to expend scarce resources to lobby state legislators. It is imperative that a certain level of funding be ensured each year for long-term organization and planning, the continuity of personnel, and more rapid progress in research. Investment in Regional Impact State governments, in contrast to the federal government, have a more direct and enduring investment in the success of their spinal cord injury research and development programs. As discussed earlier, states have increasingly come to view their research and development programs as part of their economic development plans or as a means to improve health care services for their populations. Even without a direct financial investment in a spinal cord injury research and development program, states can help to build a program by, for example, fostering linkages to local governments or to biopharmaceutical firms in the region. New York City, for example, set up an important program to help young biomedical investigators (Box 8-2). Furthermore, states can also help to steer patients to clinical trials for acute spinal cord injuries by virtue of their direct management of regional trauma systems. MODELS OF STATE-SPONSORED SPINAL CORD INJURY RESEARCH PROGRAMS The following sections profile the efforts of three states to support state spinal cord injury research programs (Kentucky, Florida, and California). The material in this section was gathered by interviewing the director or the scientific director of the state’s major spinal cord injury research center. These programs offer three different models that have all been extremely successful in making a significant research contribution and in stimulating

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Spinal Cord Injury: Progress, Promise, and Priorities BOX 8-2 Municipal Support of Biomedical Research: Case Study of New York City What began as a municipal program to enhance the recruitment of young biomedical investigators to institutions in New York City turned out to be a case study of the high economic returns—in both human (scientific talent) and funding terms—that can be obtained by investing in biomedical research. The New York City Council launched the program in 1997 by allocating $15 million over 5 years to the New York Academy of Medicine. The program was confined to grant support for new assistant professors or postdoctoral fellows in eight research-intensive New York City institutions, six of which were academic medical centers. Each year, each institution was allowed to submit up to four proposals selected by the dean. The grants provided $100,000 annually for 3 years for each awardee, with renewal for the second and third years dependent on the results of a scientific review of progress reports. Funds could be used for the investigator’s salary and equipment and laboratory supplies, but the institutional overhead was limited to 8 percent. The program was intended to promote any type of research on diseases of importance to urban populations, whether it was clinical, translational, or basic research. A committee whose members were the deans or presidents of the eight institutions oversaw the program, and the president of the New York Academy of Medicine chaired the committee. Proposals mirrored the general format of R01 grants at the National Institutes of Health (NIH). Experts selected by the president of the Institute of Medicine of the National Academy of Sciences, which oversaw the review process, reviewed the proposals for scientific quality. Ten grants were awarded annually, usually for the proposals achieving the 10 highest review scores. Evaluation of the program revealed that the first 3 years of funding had enabled grantees to amass an additional $18 million in direct and indirect grant awards, largely from NIH. Additional funding was received by 70 percent of the grantees. This $18 million represented a return of about 200 percent on the $9 million in grants awarded to the first 30 young investigators that the program funded. A standard input-output economic model was used to calculate the return on the investment (Aries and Sclar, 1998) The inputs were $27 million (the original $9 million awarded during the first 3 years of the program plus the $18 million in additional extramural grants) plus the standard multiplier effects that incorporate direct, indirect, and induced spending effects. The model suggested that each million dollars of research funding to these research-intensive institutions generated approximately 20 full-time equivalent jobs. On this basis, the level of research funding in the program at that time could be expected to generate approximately 540 new full-time equivalent positions, with employee compensation totaling $32.1 million, as well as approximately $1.1 million in indirect business taxes and $9.7 million in state and federal taxes, primarily income taxes (Barondess, 2002).

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Spinal Cord Injury: Progress, Promise, and Priorities TABLE 8-3 New York State Spinal Cord Injury Research Program’s Grant Award History Year Number of Awards Total Funds Awarded (in millions) 2000 10a $ 3.6 2001 9 $ 7 2002 15b $ 8.4 2003 1 $15 aOf 45 applications submitted (22 percent success rate). bFive researchers received CART awards, and 10 received IDEA awards. SOURCES: CRPF, 2000; Times Newsweekly, 2001; New York State Spinal Cord Injury Research Board, 2004. Challenges Facing New York State’s Program Expanding the Number of Spinal Cord Injury Researchers in New York In 2003, only six principal investigators in New York State received NIH grants (R01 grants) for projects specifically designated to be related to research on spinal cord injuries (Table 8-4), and there were no program project grants or center grant recipients in the state in this specifically designated research area. For the years 1998 to 2003, New York ranked TABLE 8-4 NIH R01 Grants for Spinal Cord Injury Research in New York State, 1998 to 2003 Year Number of R01 Grants 1998 5 1999 6 2000 4 2001 3 2002 5 2003 6 NOTE: The number of R01 grants for each year was derived by searching the NIH CRISP database (see Appendix A for more details). The search was restricted to the term “spinal cord injury,” and the activity was restricted to research projects, specifically those supported by R01 grants. SOURCE: NIH, 1999.

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Spinal Cord Injury: Progress, Promise, and Priorities third in the nation in grants for spinal cord injury-related research (Table 8-5) as well as third in the nation for overall NIH grants (NIH, 2004a) (Figure 8-5). These data suggest that New York State has too few spinal cord injury researchers to accomplish its legislatively mandated mission: to cure spinal cord injuries or their effects. The greatest challenge for the New York State program will be to attract new researchers to the spinal cord injury research field, either by collaboration with or recruitment from researchers in related fields of neuroscience or neurology and bioengineering. It is hoped that over the next 3 years the number of researchers in New York focused on fundamental and translational studies related to spinal cord injuries will at least double. TABLE 8-5 NIH Research Grants Related to Spinal Cord Injuries in States with State-Funded Spinal Cord Injury Research Programs, 1998 to 2003 State Fellowshipsa Training Grants Career Development Awards R01 Awards California 5 1 2 31 Connecticut 1 0 0 4 Florida 0 1 2 13 Illinois 3 0 0 7 Indiana 0 0 0 1 Kentucky 2 0 1 7 Maryland 0 1 1 5 Massachusetts 0 0 0 6 Missouri 1 0 2 6 New Jersey 0 0 0 0 New York 3 1 4 11 Oregon 0 0 0 0 South Carolina 0 0 0 2 Virginia 0 0 1 4 Total for 14 states 15 4 13 97 Total for 50 states 27 4 21 194 aFellowships include predoctoral, postdoctoral, and senior fellowships. NOTE: Duplicate awards were removed. The number of awards was based on narrow searches of the NIH CRISP database. The database was searched with the term “spinal cord injury” for each of the types of grants and awards. SOURCE: NIH, 1999.

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Spinal Cord Injury: Progress, Promise, and Priorities FIGURE 8-5 Overall NIH support for research in top six states, 1999 to 2004. NOTE: NIH support for 1999 through 2004 was based on reviews of the levels of funding for extramural awards (by state). SOURCE: NIH, 2004a. Funding and Administrative Issues There are several indications that an overly burdensome bureaucracy has resulted in funding delays for research grants. Several individuals testified to the committee that the New York State program has been slow to allocate and deliver grant funds after a project’s approval, with the lag time generally being almost 1 year from the grant award announcement to the receipt of funding (see Appendix A; IOM Committee on Spinal Cord Injury Workshop, September 27, 2004). The program’s centerpiece, its CORE grant for translational research involving 11 institutions, has experienced a 1-year funding delay. Delays are highly disruptive and discourage investigators from getting involved in spinal cord injury research with the New York State program, which is exactly the opposite of the program’s intent. Furthermore, issues regarding board members’ appointments and attendance remain. The legislation behind the New York State program specifies a 13-member board; 7 of these members must be appointed by the governor, and the others are appointed by leaders of the state legislature. Several slots on the board have been unfilled, which has presented difficulty in fulfilling the work of the board.

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Spinal Cord Injury: Progress, Promise, and Priorities Unique Strengths of New York State’s Research Infrastructure New York State has an unquestionably strong biomedical research infrastructure that could be drawn upon to build a strong program of research on spinal cord injuries. As mentioned above, New York State ranks third among the states in terms of total NIH grant funding, based on an analysis of data published by NIH. Key indicators of New York State’s strengths are summarized in Table 8-6. This section highlights the strengths of the biomedical research infrastructure and sets the context for understanding current state efforts in spinal cord injury research. Unique Concentration of Researchers and Institutions New York State stands out by its confluence of researchers, medical schools, universities, and numbers of individuals with spinal cord injuries. TABLE 8-6 Indicators of New York State’s Biomedical and Neuroscience Research Infrastructure Indicator Number or Amount Year(s) Rank Among 50 States Total NIH grant funds, all types $1.9 billion 2004 3 Total NIH grants to medical schools $943 million 2002 2 Total NIH grants (R01 grants) specific to spinal cord injury research 11 1998–2003 6 Society for Neuroscience members 1,854 2004 2 Number of medical schools in the state 12 2004 1 State funds for spinal cord injury research $8.5 million Annual 1a Nearby states with spinal cord injury research programs 4b NAc NA aRank among 14 other states with spinal cord injury research programs. bNew Jersey, Connecticut, Maryland, Massachusetts. cNA = not applicable. SOURCES: NIH, 1999; New York State Spinal Cord Injury Research Board, 2002; AAMC, 2004; NIH 2004a,b; Personal communication, F. Johnson, Society for Neuroscience, November 19, 2004.

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Spinal Cord Injury: Progress, Promise, and Priorities No other state has, in such a close geographic proximity, as many resources vital to building a formidable research capacity in spinal cord injuries. In 2004, the state received nearly $2 billion from NIH (Figure 8-5), ranking only behind California and Massachusetts. New York has sustained its third-place ranking over the past 5 years (Figure 8-5), but the state faces increasingly stiff competition from other states. Although New York was the leading recipient of NIH funds in the 1980s, from 1981 to 1995 New York’s share of total NIH research funding gradually eroded, from a high of 15 percent in 1981 to 11 percent in 1995 (Sturman et al., 1997, 2000). Apart from NIH, grant funding for biomedical research comes from a variety of other sources (e.g., the U.S. Department of Veterans Affairs, state and local governments, and private sources). In a 1998 survey of the 20 largest New York State-based biomedical research institutions, NIH funding accounted for about 51 percent of research revenues from all sources, defined as federal, state, and local governments; industry; and foundations (Sclar and Aries, 2000). Thus, the total biomedical research funding from all sources in New York State is estimated to be nearly $4 billion. Capacity for Clinical Research and Clinical Trials New York has more medical schools than any other state. Of the nation’s 125 medical schools, New York has 12; the state with the next highest number, California, has 8 (AAMC, 2004). In addition to hospital and outpatient facilities, New York is also home to several centers of rehabilitation medicine, including the Mount Sinai Spinal Cord Injury Model System center, Burke Rehabilitation Hospital, Rusk Institute of Rehabilitation, Helen Hayes Hospital, the Bronx Veterans Affairs Medical Center, and several other U.S. Department of Veterans Affairs hospitals. The most research-intensive areas within the state are the New York City metropolitan area9 and the Buffalo-Rochester area (Sclar and Aries, 2000). Beyond its borders, New York is strategically situated in a populous region with a high density of major medical centers and medical schools. Its neighboring states—New Jersey, Connecticut, Pennsylvania, and Maryland—also have strong research and clinical capacities (Brookings Institution, 2002). These states rank high in terms of NIH research dollars (Table 8-5). All of the states except Pennsylvania have state spinal cord injury programs (Table 8-1). More than 4,700 life scientists work in the New York City metropolitan area, which includes New York City, Long Island, and northern New Jersey. This region has 20 institutions that grant Ph.D.’s in the life sciences (Brookings Institution, 2002). 9   Includes Long Island and Westchester County.

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Spinal Cord Injury: Progress, Promise, and Priorities These features make New York State situated to forge regional networks of clinical, basic, and translational research on spinal cord injuries. A regional clinical trials center could facilitate efforts to link the many resources in the New York region. The proximity of multiple trauma centers in and near New York City offers the opportunity to coordinate efforts on acute phase clinical trials. Further, pilot studies examining the impact of health care delivery such as the immediate triage and rapid transport of spinal cord injured patients to specialized centers could be conducted. Concentration of Expertise in Neuroscience, Neurosurgery, and Neurology New York also has a rich concentration of researchers with expertise in neuroscience, including several Nobel Prize winners. Of the 36,000 basic scientists and clinicians who are members of the Society for Neuroscience, 1,854 (about 5 percent) are from New York State (Personal communication, F. Johnson, Society for Neuroscience, November 19, 2004). New York’s neuroscience or neurology research programs at Columbia University, New York University, Cornell University, Rockefeller University, and the State University system are world renowned. The abundance of researchers in fields that overlap the spinal cord injury research field makes it possible for the New York State Spinal Cord Injury Research Program to expand by cultivating collaborations and by sharing core facilities, equipment, and other resources. Opportunities to increase the focus on spinal cord injury research and draw talented researchers to New York could be enhanced through the funding of two to four endowed chairs in spinal cord injury research at New York universities. Potential for Private and Public Linkages Another major strength of New York is its rich potential for institutional linkages with pharmaceutical firms, foundations, and patient advocacy organizations. Helping to forge such linkages is the Biomedical Research Alliance of New York, a for-profit alliance of 138 affiliates, including large New York State-based university medical centers. This alliance largely focuses on aiding the organization and start-up of clinical research, including the preparation of regulatory documents and submissions to institutional review boards. Public and private research organizations stand to gain by creating local and regional consortia for clinical trials and other collaborations that are key to greater access by individuals with spinal cord injuries and research efficiency. Apart from clinical trials, core facilities for animal research are an important shared resource. Just as the Miami Project to Cure Paralysis and

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Spinal Cord Injury: Progress, Promise, and Priorities the Reeve-Irvine Research Center in California have created core facilities for production and analysis of the findings from studies with animal models, a New York-based institution could also create the same types of facilities through various cost-sharing agreements between payers. The Christopher Reeve Paralysis Foundation, which has distributed more than $40 million in research grants over the past two decades, is headquartered in nearby New Jersey. New York and neighboring states are headquarters to numerous pharmaceutical companies. A new economic analysis by the pharmaceutical industry attempted to measure the relative intensities of their activities by state by formulating a new measure, the biopharmaceutical innovation pipeline index. By this new index, New York State ranked 10th in the nation; most of its neighboring states ranked higher. The index captures measures in four areas: biopharmaceutical research funding, biopharmaceutical risk capital funding, biopharmaceutical industry human capital and workforce, and biopharmaceutical innovation output (DeVol et al., 2004). A separate analysis found that since 1995 biopharmaceutical firms in the New York City metropolitan area have attracted more than $639 million in venture capital (Brookings Institution, 2002). Finally, the state of New York is another potential source of help in forming public and private partnerships. In 1999, the New York State legislature passed a comprehensive law to fund a $522 million economic development stimulus by providing support for science and academic research. The New York State Office of Science, Technology, and Academic Research is the administrative locus. This 1999 law enhanced what was already a strong state investment. A survey in 1995 found that New York ranks fourth in the nation in total state investment in research and development (Jankowski, 1999). Strengthening the Research Infrastructure in New York State As demonstrated in this chapter, state spinal cord injury research programs can make a significant contribution to the research endeavor to find a cure for spinal cord injuries. Several model spinal cord injury research programs, working with fewer resources than those available in New York State, used funding from their states as seed money to build programs of far greater magnitude and scientific impact than those in New York State. New York State, with the highest level of state funding for spinal cord injury research of any state program, has the potential to assume a leadership role in spinal cord injury research. However, for it to do so, its program must have a sustainable research infrastructure. New York has an impressive concentration of researchers who could be working on spinal cord injury research. Continued efforts to support and strengthen the program will

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Spinal Cord Injury: Progress, Promise, and Priorities attract these scientists into the field. To maximize its efforts and build its program, the New York State program should continue to enter into collaborations that draw on the unique strengths of New York’s biomedical expertise, clinical caseload, and infrastructure, as well as the strengths of the region beyond New York’s borders. RECOMMENDATIONS Further development of the New York State Spinal Cord Injury Research Board should build on the recommendations presented in this report, with additional focus on the following recommendations. Recommendation 8.1: Build and Strengthen New York State’s Research Infrastructure The New York State Spinal Cord Injury Research Board should increase its research infrastructure to meet the program’s mission. The Board should develop and sustain a vigorous recruitment and training effort for fundamental and translational research; the number of investigators should be increased progressively over the next 3 years with the goal of at least doubling the number of researchers focused on fundamental and translational studies of spinal cord injuries; establish a coordinated statewide research network that encourages collaborations among individual investigators and interinstitutional research efforts; the Board should convene a statewide meeting of investigators and relevant stakeholders to plan a research strategy and coordinate research efforts; cultivate formal linkages with researchers, programs, and biopharmaceutical companies in the region to forge partnerships for basic, translational, and clinical research; and establish regional core laboratory facilities. Recommendation 8.2: Develop a Regional Clinical Trials Center The state of New York should use its unique strengths to establish a regional clinical trials center. This center should develop and coordinate multicenter clinical trials to examine therapies for the treatment of spinal cord injuries; sponsor a clinical trial of decompression as an early intervention and clinical trials of other therapies to be used during the acute phase of a spinal cord injury by using the special opportunities offered by New York City’s geographic location and the unique resources of its trauma centers; and manage a clinical trials clearinghouse.

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Spinal Cord Injury: Progress, Promise, and Priorities Recommendation 8.3: Restructure Research Funding and Oversight Processes The New York State Spinal Cord Injury Research Board should work with the state of New York to reduce administrative burdens, improve the approval and grant distribution processes, and establish a rapid-response funding mechanism to capitalize on new research ideas. Recommendation 8.4: Ensure Independent Evaluation The New York State Spinal Cord Injury Research Board should establish an independent external review panel that meets periodically to rigorously assess the program’s efforts toward its stated mission to cure spinal cord injuries. REFERENCES AAMC (Association of American Medical Colleges). 2004. Medical Schools of the U.S. and Canada—Alphabetical Listing. [Online]. Available: http://www.aamc.org/members/listings/msalphaae.htm [accessed November 11, 2004]. Aries NR, Sclar ED. 1998. The economic impact of biomedical research: A case study of voluntary institutions in the New York metropolitan region. Journal of Health Politics, Policy & Law 23(1): 175-193. Attorney General of California. 2004. Proposition 71—Stem Cell Research. [Online]. Available: http://www.voterguide.ss.ca.gov/propositions/prop71-title.htm [accessed November 11, 2004]. Bank of Boston Economics Department. 1991. The Job-Related Impacts of the Biotechnology Industry in Massachusetts. Boston: Bank of Boston. Barondess JA. 2002. Municipal support of biomedical research. Academic Medicine 77(1): 31-33. Battelle Memorial Institute/SSTI. 1998. Survey of State Research and Development Expenditures: Fiscal Year 1995. Westerville, OH: Battelle Memorial Institute. Battelle Technology Partnership Practice/SSTI. 2004. Laboratories of Innovation: State Bioscience Initiatives 2004. Washington, DC: Biotechnology Industry Organization. Brookings Institution. 2002. Profile of Biomedical Research and Biotechnology Commercialization: New York–Northern New Jersey–Long Island Consolidated Metropolitan Statistical Area. [Online]. Available: http://www.brookings.edu/dybdocroot/es/urban/publications/biotechnewyork.pdf [accessed November 4, 2004]. California Health Care Institute. 1993. The Health Care Technology Industry: What’s Growing in California. La Jolla, CA: California Health Care Institute. Center for Social Gerontology. 2004. Tobacco Settlement Funds Daily Updates. [Online]. Available: http://www.tcsg.org/tobacco/settlement/updates.htm [accessed November 11, 2004]. CRPF (Christopher Reeve Paralysis Foundation). 2000. New York State Spinal Cord Research Trust Fund Awards $3.6 Million in Grants. [Online]. Available: http://www.charitywire.com/charity44/01180.html [accessed October 3, 2003]. DeVol R, Wong P, Bedroussian A, Wallace L, Ki J, Murphy D, Koepp R. 2004. Biopharmaceutical Industry Contributions to State and U.S. Economies. Santa Monica, CA: Milken Institute.

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Spinal Cord Injury: Progress, Promise, and Priorities Garvey M. 2004, November 22. California stem cell project energizes other states to act. Los Angeles Times. p. A1. Jankowski JE. 1999. What Is the State Government Role in the R&D Enterprise? NSF Report 99-348. Arlington, VA: National Science Foundation. Kleitman N. 2001. Under one roof: The Miami Project to Cure Paralysis model for spinal cord injury research. Neuroscientist 7(3): 192-201. KSCIRC (Kentucky Spinal Cord Injury Research Center). 2004. Overview. [Online]. Available: http://www.kscirc.org/overview.htm [accessed December 29, 2004]. Lasker Foundation. 2000. Exceptional Returns: The Economic Value of America’s Investment in Medical Research. New York: Lasker Foundation. Maryland Department of Economic and Employment Development. 1994. The Impact of the National Institutes of Health in Maryland and the U.S. Baltimore, MD: Maryland Office of Research. National Science Foundation. 2004. Science and Engineering Indicators 2004. Arlington, VA: National Science Foundation. New York State Spinal Cord Injury Research Board. 2002. Request for Proposal: Guidelines and Instructions for CART and IDEA Grants (FY2002). [Online]. Available: http://www.wadsworth.org/new/rfp/scirb/finalrfp.pdf [accessed June 6, 2003]. New York State Spinal Cord Injury Research Board. 2003a. Center of Research Excellence. [Online]. Available: http://www.wadsworth.org/new/rfa/spinal/rfa.doc [accessed June 6, 2003]. New York State Spinal Cord Injury Research Board. 2003b. Program Profile. Albany: New York Department of Health. New York State Spinal Cord Injury Research Board. 2004. $15 Million Award for Research to Find Treatment and Cure for Spinal Cord Injury and Paralysis Announced. [Online]. Available: http://www.wadsworth.org/new/rfa/spinalaward.htm [accessed January 7, 2005]. NIH (National Institutes of Health). 1999. Computer Retrieval of Information on Scientific Projects. [Online]. Available: http://crisp.cit.nih.gov/ [accessed January 8, 2004]. NIH. 2004a. NIH Extramural Awards by State and Foreign Site. [Online]. Available: http://grants.nih.gov/grants/award/state/state.htm [accessed January 7, 2005]. NIH. 2004b. NIH Extramural Awards Ranking Tables Medical Schools Long-Term Trends and Historical Data. [Online]. Available: http://grants1.nih.gov/grants/award/trends/medschl.htm [accessed January 7, 2005]. NYSTAR (New York State Office of Science, Technology, and Academic Research). 2001. Discovery Drives Progress in New York. [Online]. Available: http://www.nystar.state.ny.us/pa/papers120501.htm [accessed November 3, 2004]. Pearse DD, Pereira FC, Marcillo AE, Bates ML, Berrocal YA, Filbin MT, Bunge MB. 2004. cAMP and Schwann cells promote axonal growth and functional recovery after spinal cord injury. Nature Medicine 10(6): 610-616. Sclar E, Aries N. 2000. Biomedical Research and the New York State Economy. New York: Council on Biomedical Research and Development, New York Academy of Medicine. Silverstein SC, Garrison HH, Heinig SJ. 1995. A few basic economic facts about research in the medical and related life sciences. FASEB Journal 9(10): 833-840. SSTI (State Science & Technology Institute). 1997. State Science and Technology Strategic Planning: Creating Economic Opportunity. Westerville, OH: State Science & Technology Institute. SSTI. 1999a. Governors Talk Technology. [Online]. Available: http://www.ssti.org/Digest/1999/042399.htm [accessed November 11, 2004]. SSTI. 1999b. S&T Programs Funded through Tobacco Settlements. [Online]. Available: http://www.ssti.org/Digest/1999/111299.htm [accessed November 11, 2004].

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Spinal Cord Injury: Progress, Promise, and Priorities Sturman LS, Sorin MD, Larkins E, Cavanagh KA, DeBuono BA. 1997. Losing ground: NIH funding to New York State researchers. Bulletin of the New York Academy of Medicine 74(1): 6-19. Sturman LS, Sorin MD, Hannum RJ. 2000. Opportunities lost: NIH research funding to New York’s medical schools. Journal of Urban Health 77(1): 86-95. Times Newsweekly. 2001. Research of Spinal Cord Injury Gets State Funds. [Online]. Available: http://www.timesnewsweekly.com/OldSite/092001/NewFiles/SPINAL.html [accessed October 3, 2003]. U.S. Congress, Senate Committee on Appropriations. 2003. Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriation Bill, 2004. 108th Cong., 1st Sess. June 23, 2003.