Multiple Sclerosis Current Status and Strategies for the Future (2001) / Chapter Skim
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7 Building and Supporting the Research Enterprise
7 Building and Supporting the Research Enterprise
Pages 325-346
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From page 325... ...
RESEARCH FUNDING According to one analysis that compared funding levels at the National Institutes of Health (NIH) to the total burden of specific diseases, MS funding is higher than might be expected (Figure 7.1~.8 In terms of funding from private health foundations that target specific diseases, MS research is also relatively well supported, at least in the United States.
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From page 328... ...
~~ ~ -- -~. ~ ,~: 1980- 1984 1985- 1989 1990- 1994 1995- 1999 Breast Cancer 1980- 1984 1985- 1989 1990- 1994 1995- 1999 FIGURE 7.2a Summary of publications in general medical journals.
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From page 329... ...
A review of publications from 1985 to 1999 on MS, epilepsy, diabetes, rheumatoid arthritis, Alzheimer's disease, Parkinson's disease, and breast cancer showed that MS is the only one of these that has consistently declined in terms of number of publicaTABLE 7.1 Research Budgets of Selected Health Organizations in 1998 Organization % of Budget Total Net Total Research Spent on Revenue Assets Expenditures Budget Research Alzheimer's Association 48.2 34.2 46.7 12.8 27 American Diabetes Association 125.1 49.6 122.9 19.6 16 Arthritis Foundation 114.1 141.9 103.1 24.2 23 March of Dimes 181.3 43.0 174.7 35.6 20 Muscular Dystrophy Association 135.0 113.2 112.5 24.6 22 National Parkinson Foundation Huntington's Disease Society of America 12.1 3.7 1.7 3.7 4.0 24 1.0 27 NOTE: Data in this table are based on annual reports for each organization and have been confirmed by each of the organizations listed.
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From page 330... ...
. Compared to epilepsy, diabetes, rheumatoid arthritis, Alzheimer's disease, Parkinson's disease, and breast cancer, publications on MS showed the greatest downward trend in the New England Journal of Medicine and the Journal of the American Medical Association.
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From page 331... ...
. Compared to articles on ALS, Alzheimer's disease, Parkinson's disease, epilepsy, and Huntington's disease, MS research articles ranked the lowest overall in terms of average percent increase in numbers of
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From page 332... ...
The British MS Society also decided not to continue funding MS research centers. Multisite research centers are ideal for certain types of research, such as clinical research requiring larger numbers of patients than can be readily enrolled in a single region, large epidemiological trials, or studies that require scarce or expensive resources such as magnetic resonance imaging (MRI)
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From page 333... ...
Even if this is not accurate, such perceptions can deter investigators who feel they would be unlikely to thrive in such a community. Reflecting a deeply held belief among the research community, a 1994 report evaluating cancer research in the United States stated: "Real progress and new ideas in cancer research usually comes from unexpected and unpredictable directions."~5 The 1994 report evaluating cancer research in the United States noted that "excessive targeting of specific areas for research can be counterproductive.
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From page 334... ...
Recruitment of new versus established researchers is considered separately below. Recruitment of New Investigators Although the committee was not in a position to analyze trends in the quality of applications for postdoctoral fellowships in MS research, it is possible to look at the interest level as reflected in the trends in numbers of applications.
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From page 335... ...
Although it has been suggested that postdoctoral application rates might have declined at private foundations because applicants' success rates were increasing at NIH, the fact that postdoctoral applications also declined at NIH suggests another explanation. One possibility is the poor job market for academic scientists that discouraged many Ph.D.s from pursuing research careers.
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From page 336... ...
Indeed, the Robert Wood Johnson Clinical Scholars Program for physicians might also offer a model for its converse multidisciplinary programs in which survey scientists, health economists, psychologists, clinical epidemiologists, nurses, and social workers receive training to enhance their collaborations with physicians. Recruitment Strategies The recruitment package might be enhanced relatively r ;~ nexpensively by providing an optional travel allowance to permit a fellow to spend time in the laboratory of another MS Society grantee.
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From page 337... ...
BUILDING AND SUPPORTING THE RESEARCH ENTERPRISE MS Postdoc Fellowship Applications ~ 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 190 170 150 130 1 1 0 90 70 50 250 200 150 100 50 Arthritis Postdoc Applications 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 JDF Postdoc Fellowship Applications O 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 1 000 800 600 400 200 O 3000 2500 2000 1 500 1 000 50 iLR ~ ~ 40 35 American Cancer Society Postdoc Fellowship Applications o 1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 NIH Postdoc Fellowship Applications _~ .
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From page 338... ...
In the past, the National Multiple Sclerosis Society has provided small amounts of funding (for example, $100,000) to researchers in established labora
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From page 339... ...
Although there are many researchers who combine skills in clinical and basic science, there is a conspicuous lack of basic scientists pursuing MS research, particularly in the neurosciences. This could be actively encouraged by organizing symposia in conjunction with the annual scientific meetings of other medical and basic science organizations, such as the Society for Neuroscience where MS research has received considerably less attention than other neurological diseases.
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From page 340... ...
For example, the National Breast Cancer Coalition, a patients' advocacy group, successfully intervened to improve patient accrual for a pivotal trial of Herceptin for breast cancer.* Michael Milken, the founder of CaP CURE, is another example.
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From page 341... ...
Sponsorship of Clinical Trials Although academic medical centers were once considered the main citadels of clinical research, most clinical studies that bring new drugs from bench to bedside are now led by pharmaceutical companies.3 In the United States, 70 percent of the money for clinical drug trials in the U.S. comes from industry rather than the federal government.5 Until recently, the pharmaceutical industry needed academic physicians to perform drug trials because the industry lacked the in-house expertise and the academic medical centers had better access to patients as subjects for trials.
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From page 342... ...
The committee neither encourages nor discourages this option but notes that patient advocates can be highly effective in stimulating the availability of therapeutic options, in terms of using their political will both to modify FDA decisions and to increase research support for particular diseases. MS Drugs Are Orphans One critical element in encouraging development of therapeutic options for people with MS is the existence of specific revenue-generating incentives for private firms.
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From page 343... ...
The American Cancer Society has an extramural research budget of $171 million, of which approximately 5 percent is devoted to health services research.l° This figures compares favorably to public spending in health services research in the United States, which is proportionately much less than it is for biomedical research. The 1999 research budget for the Agency for Health Research and Quality (AHRQj, the primary funding agency that supports health services re*
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From page 344... ...
They can also to some degree piggyback onto policies established by the federal government for example, policies for the appropriate care and use of animals in research, trainee programs for the ethical conduct of research, and intellectual property agreements. Private foundations can more readily develop expedited grant review, and select individual investiga
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From page 346... ...
Cam CURE, the organization founded to promote the development of therapies for prostate cancer, offers but one example of an innovative approach (Box 7.21.
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