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PRESIDENTIAL ADDRESS
WHITHER OR WITHER LAWRENCE E. SHULMAN Members of the American Rheumatism Association, Ladies and Gentlemen, Friends and Guests. My discussion today is twofold: first, a somewhat concise report of several important events of the past year; and then, in somewhat greater depth, certain considerations with respect to current needs and planning for the future. This has been one tumultuous year for the American Rheumatism Association, a year of accomplishments, anxiety, anguish, new awareness, and actior,. On January 4,1975, the President signed into law the “National Arthritis Act of 1975” (S-2854). Doubtless this has been the most significant accomplishment of the year. Time constraints make it impossible to pay proper tribute to all those who participated in its movement and passage. Special gratitude must go to Senator Alan Cranston of California and Representative Paul Rogers of Florida, and their competent and courteous assistants, Ms. Louise Ringwalt and Mr. Dack Dalrymple respectively; to the Government Liaison Committees of the Medical Administrative Committee (MAC) and The Arthritis Foundation; to the Workshop on Arthritis Centers; t o all of you; and particularly to Mr. David D. Shobe, whose energetic expertise prodded Presented at the National Meeting of the American Rheumatism Association, June 5, 1975, New Orleans, Louisiana. Lawrence E. Shulman, M.D., Ph.D.: Director, Connective Tissue Division, The Johns Hopkins Hospital, Baltimore, Maryland 21205, and President, American Rheumatism Association, June 1974 to June 1975. Address reprint requests t o Dr. Shulman. Arthritis and Rheumatism, Vol. 19, No. 1 (January-February 1976)
and piloted us throughout. As most of you know, the National Arthritis Act authorizes the formation of a National Commission on Arthritis to develop an Arthritis Plan, an Arthritis Coordinating Committee for all federal programs in arthritis, various demonstration projects, a national Arthritis Data Bank, Comprehensive Arthritis Centers, and a new office of Associate Director for Arthritis and Related Musculoskeletal Disorders within the NIAMDD. The commission was appointed, met first on April 7, 1975, and is hard at work under the able chairmanship of Dr. Ephraim Engleman of San Francisco. Research activities continue to be highly productive. This fact is amply documented by the record number of 3 16 abstracts submitted for the Scientific Program of this meeting. The previous record was 201 abstracts 2 years ago in Los Angeles. Diverse new areas are being explored. I have admired how rapidly the exciting discovery of the great frequency of the specific histocompatibility antigen, HL-A W27, in ankylosing spondylitis has been exploited to provide new insights and concepts concerning the pathogenesis of the spondylitic group of rheumatic diseases. The committee activities of both the ARA and the A F have never before achieved such a high degree of productivity. I shall be referring to several of their reports and findings later. As to our anxieties, there have been many. There have been administrative disruptions of major dimensions. One need only look at the key resignations offirst, our Medical Director, and of then the Executive Director of The Foundation. Within The Foundation there
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have been strong disagreements with respect to policies and organization; these conflicts have been with us for some time. Federal support for research and training in the rheumatic diseases continues to dwindle and remains uncertain. As seen in Table 1, the number of training grants and trainees continue to diminish, on their way to extinction. The “old” research fellowships are being phased out; the “new” research fellowships (with their pay-back provisions) provide only 20 positions, divided equally between MDs and PhDs, each year. Support for individual research grants and program-project grants remains stable, but economic inflation erodes their value. Our anguish stems from a deep frustration in not being able to find support for the large number of highly qualified young physicians who want clinical and/or research training in rheumatology. It is ironic that at a time when our field-as a consequence of successful growth in research and educational programs sponsored by both the AF and the NIH previously-has become very attractive to the best of our young people, very few training positions are available to them. In a word, we have “arrived,” but our “well is dry.” We were made aware of the attitudes of our A F chapter leaders by an analysis of responses to a comprehensive questionnaire prepared by an ad hoc committee, chaired by Mr. A. D. Poole of San Diego, and sent to the principal volunteer executive officers of each chapter. In the medical and scientific area the chapters felt the need for more scientific information from the ARA and MAC in lay terms and with greater “emotional emphasis.” This was to be expected. Not entirely expected, however, were responses indicating that significant majorities of the chapter leaders thought: first, that national research funds should be awarded on the basis of quality and peer review without regard to geographic distribution; second, that national guidelines should be created for chapter and medical programs; and third, that chapter support of local research and training should be coordinated with the national center grants Table 1. Arthritis Research Training ( N I A M D D )
Training grants Trainees Fellows (old type) Fellows (new type) RCDAs
* Projected
I912
I975
I976*
30 76 I2 8
24 37 3 20 I2
15
-
-
and fellowship program. We were also made aware of the huge educational needs in rheumatology at all levels across the land by an equally comprehensive survey of all teaching centers conducted by the Professional Education Committee of the AF, chaired by Mr. George Kuehn of Boston. All of the above situations demanded action; the response was most gratifying. With the strong support of the A F representatives to MAC, we were able to persuade the Budget Committee and the A F board to increase the research budget this year, 1975-1976, by $488,00O-$180,000 more for approved Fellowships and $308,000 more for the approved centers-in order to maintain our research and educational establishment for its own value, and to prepare for implementing the National Arthritis Act. Several important and productive meetings, including both AF board and medical leaders, were held to consider major improvement in our organizational structure. Search committees for the Department of Medical and Scientific Affairs, with Dr. Charles L. Christian as Chairman, and for the AF’s Executive Director, with Mr. Poole as Chairman, were formed and are hard at work.* The administrative breach has been filled admirably. Dr. Emmanuel Rudd of New York City kindly agreed to become the Consulting Medical Director, and Mr. Charles B. Harding, Chairman of the Board of Directors, has assumed the essential responsibilities of Mr. Daniel Button, the former executive director. We are deeply indebted t o them both, as well as to the national staff, which has carried on magnificently. A special vote of thanks goes to the devoted, talented, and indispensable Executive Secretary of the ARA, Ms. Lynn Bonfiglio. Pervading all of these concerns has been a persistent request, from the A F at all levels, for a defined medical strategy for The Foundation. I shall attempt to address myself to the issues pertaining t o this clear need. Before doing so we must restate the goals of The Arthritis Foundation (and the ARA), which, in broad terms, are: a ) to develop those bodies of new knowledge of the causes, pathogenesis, or disease mechanisms of the rheumatic diseases that will allow the development of new means of treatment (even cure) and prevention; and b) to do everything possible to provide, for all those afflicted with one or another of the rheumatic diseases, the best possible care. Table 2 summarizes the medical portion of the report to The Arthritis Foundation by the consulting
*Mr. Clifford Clarke was selected as Executive Director in August 1975.
WHITHER OR WITHER
Table 2. “Meeiing Emergin Needs” Repori to The Arthritis Foundaiion by Arthur %. Liiile. Inc (January I9751 I . Clearer expression of the medical stategy of AF: a. National perspective t o local efforts b. Justification for funds by chapters t o national c. Recruit volunteers and contributors 2. Progress made in the fight against arthritis: a. “Current state of theart” b. Most promising avenues for further progress 3. Process by which medical dollars are allocated: How? How much? To whom? Why? 4. How are medical funds employed? Benefits? 5 . Allocating funds among research, training, patient care 6. Clear distinction between national and chapter medical programs 7. What are the chapters doing medically?
firm of Arthur D. Little, Inc, which conducted a survey of the A F last fall designed to analyze chapter-national relationships and to suggest improvements. In doing so they visited 17 chapters and interviewed several persons. They found that the chapters wanted a more lucid expression, in lay terms, of the AF medical strategy stating that it would provide a national perspective to local efforts. Chapters also requested a clear justification for their contribution to national and help to recruit volunteers and interest potential contributors. More specifically, the chapters wanted to know more about the progress being made in the fight against arthritis and the most promising avenues for future advances. All this information is readily available in the so-called Thomas Report of the National Advisory Committee on the Future of Arthritis Research; it is available in lay terms, condensed into a booklet. The chapters then wanted to know how the medical dollars are allocated. The answer is that money is allocated by the Research Committee of MAC and its subcommittees, with peer review and rotating membership, by approving applications of quality to the fullest in open competition, and by determining the “best fit” to various programs (fellows, centers) according to estimates of relative need. Concerning the question of benefits, the research fellowships attract and support the academic leaders of the future, as well as indirectly support research itself; and the centers, although the support for each is small, have helped to keep rheumatic disease units together as the NIH training grants have faded away. The national funds have supported research and training, not patient care. With respect to the distinction (at times clear, but usually not) between national and chapter programs and what the chapters are doing medically, the facts are now gathered for the first time in a superb document just presented to MAC: the
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Chapter Medical Program Directory, prepared by a CMCC subcommittee chaired by Dr. Joseph E. Levinson of Cincinnati. It contains a long-sought collection of important data, some of which I shall present shortly. The Thomas Report includes a series of recommendations (Table 3) prepared in 1972 by a group of learned men of diverse research interests. The first recommendation is to mount an extensive effort to find a viral (or bacterial) agent as a cause of arthritis. There are one or two viruses, Hepatitis B and rubella, that cause a self-limited form of arthritis. The authors of the Thomas Report were really thinking of a “slow virus” as a cause of chronic arthritis, such as that in rheumatoid arthritis or in SLE; the search is still on. A new form of bacterial arthritis due to Yersinia has only recently been appreciated. Second, they suggested more research to pinpoint the immunopathology of rheumatoid arthritis; there are several papers on this subject at this meeting. Third, they urged a further clarification of the mechanisms of inflammation; pertinent to this effort is the interesting paper, also presented a t this meeting, about the production by rheumatoid synovium of prostaglandin E, which can cause resorption of bone. Techniques for joint replacement are being extended beyond the hip, to the knee and other joints. At this meeting methods for total elbow replacement and an improved Clayton operation for the feet are being presented. More epidemiologic studies are needed. But rheumatology research advances. Were this committee to convene again in 1975, it would probably add at least one other recommended category, namely genetic research, highlighting the HL-A system and other markers of immune responsiveness. Table 4 lists some of the rheumatic diseases that have been discovered within the past 10 years or have come to the forefront of thinking and interest during that time. The diversity of the group is to be noted. It must be stressed both to our colleagues in The FoundaTable 3. National Advisory Commiiiee on the Future of Arihriiis Research (1972) Recommendation
I . Identify possible viral agent a s cause of arthritis 2. Pinpoint immunopathology in rheumatoid arthritis 3. Clarify mechanisms of inflammation 4. Broaden techniques for joint replacement 5.
Epidemiologic studies
Yield New drug, vaccine Blocking agents Chemical blockade Other joints, better material New theories
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Table 6. Individual Research Grants (1972)
Table 4. “Recent” Rheumatic Diseases Arthritis of viral hepatitis Yersinia arthritis Behcet’s syndrome Caplan’s syndrome Polymyalgia rheumatica Mixed connective tissue disease CREST syndrome Relapsing polychondritis Pseudogout Hemochromatosis
Applications Number awarded Total support Range of chapter support
Chapters
National
I72 I02 $497,800
-
$500-$79.800
Twenty-seven chapters gave grants; 12 chapters gave grants of $10,000 or more (84.3%of total funding).
tion and to the public that there are many missions in rheumatology. Yes, we do look forward to key “breakthroughs’’ in understanding rheumatoid arthritis and SLE, but the task is much broader than that. There are in fact many research strategies and the field is constantly changing. Therefore it is important to create the mechanisms by which research strategies will remain ever current. There is much to be learned from the wealth of data assembled in the Chapter Medical Program Directory. Some of the key findings of this report follow. First, in Table 5, in 1972 chapter support for fellowships almost equalled that of the research fellowship program awarded nationally. Competition for these fellowships was a little less keen in the chapters than in the national program. The range of chapter support is very wide. A very small number of chapters, namely 6, awarded 40 of the 51 fellowships, comprising almost 80% of the total funding. I do not have the breakdown between clinical and research fellowship support in the chapters. It is a pity that in 1972 only $15,000 was awarded for Allied Health Professional Fellowships in the entire United States. Table 6 shows that the chapters awarded another $497,800 to support individual research grants. Sixtytwo per cent of the applications were funded. Again there is a great range in research support among the chapters, and again it was a small number of chapters, 12, that gave grants of $10,000 or more, comprising 84%
of the total funding. Some might debate the value of a research grant of $500. Interestingly, the chapters that gave research grants were frequently not the same as those that supported fellows. The committee found that only half of the research grant applications had been subjected to any critical review, and that outside peer review occurred only rarely. Over $600,000 were allotted by 33 chapters as institutional grants to the medical schools (Table 7). The total awarded by the chapters is greater than the total expended for the entire national center grants program. Again the range of support is wide: only a small number of chapters, 13, provided 80% of all the funding; here too the chapters giving institutional grants were not necessarily the same as those supporting fellows or individual research grants. These institutional grants are probably of great value, providing, as do the national center grants themselves, the important “critical glue” that keeps rheumatic disease units together during this time of federal “fall-off.’’ To summarize these three programs for research and training in 1972 (Table 8), the overall support by chapters actually exceeded the total support by national and comprised 62% of all Arthritis Foundation support for research and training. (These are data for 1972. The current national expenditures for 1975 are much higher, totaling approximately $1,800,000.) The subcommittee also found, by analyzing their data, that overall the larger chapters gave a much higher priority to funding research and training programs than did the smaller chapters.
Table 5. Fellowship Training (1972) Chapters
National
81
$397,400
I09 47 $440,500
$1.000-$105,000
$7.500-$13.000
Table 7. Institutional Grants (1972)
~
Applications Number awarded Total awards Range of chapter support
51
Seventeen chapters gave awards; 6 chapters supported 40 of the 51 fellowships (78.4% of total funding).
Number awarded Total support Range ofchapter support
Chapters
National*
33 $632,000 $200-$245,000
38 $508,000 $5.300-$18,200
Twenty-two chapters gave grants; 13 chapters gave grants of $10.000 or more (79.6% of total funding). * Arthritis Clinical Research Center Grants.
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Table 10. Patient Services by Chapters ( I972)
Table 8. Research and Training (1972) Chapters
N urn ber Fellowships Research grants Institutional grants
49 $397,400 $497,800 $632,000
TOTAL
$1,527,200
National
Total
$440,500 $508,000
$837,900 $497,800 $ I , 140,000
$948,500
$2,475,700
-
Table 9 shows that the chapters spent almost three-quarters of a million dollars, or roughly one-third of their total expenditures, for various patient services. These exclude the salaries of the chapter staff and consultation staff. A great diversity of patient services were rendered by chapters. Table 10 lists them in the order of number of chapters providing each individual service. Most frequent was the provision of information to patients, such as the listing of clinics and physicians. Next was the support of established arthritis clinics, followed by loan closets and group education classes. Chapters also bought therapeutic equipment and provided transportation and home care for the patients in their community. Next were funds used for developing new arthritis clinics, followed by support for arthritis social clubs. Twenty-four of the chapters paid for drugs, 20 paid for clinic fees, and 18 paid laboratory fees. Twenty chapters supported Allied Health Professionals; 19, the visiting nurse associations; 15, social services; and 11, vocational guidance. Twelve chapters funded craft shops and 7 supported traveling clinics. In general, this is a large and impressive menu of services to patients. One of the most interesting findings of the Chapter Medical Program Subcommittee is that those chapters that obtained their income largely by independent fund raising spent most of their funds in research and training programs, whereas those chapters supported largely by the United Way expended most of their funds for patient services. The chapters were asked by the subcommittee how they would use their funds if more funds were to become available. They responded in the following orTable 9. Chapter Patient Services Expenditures* ( I 972) Number ofchapters Total Range
* Excludes salaries
56
$706,000 $500-543,900
of chapter staff and consultants.
Service
Chapters
Patient information Established arthritis clinics Loan closets Group education classes Therapeutic equipment Transportation Home care programs Developing new clinics Arthritis social clubs Drug payments Allied health professionals Pay clinic fees Visiting nurse associations Pay laboratory fees Social services Craft shops Vocational guidance Traveling clinics
66 51 45 43 31 29 29 28 27 24 20 20 19 18
15 12 II 7
der: a) fellowship training, b) establishment of new clinics, and c) more research grants. What are the views of the directors of Arthritis Programs across the nation? What personnel do they now have and what do they need? In 1974 a searching questionnaire was constructed and distributed to all directors of Arthritis Teaching Programs and other medical institutions by the Professional Education Committee of The Foundation. The results of that most valuable survey are indeed alarming. Here are some of their preliminary data. The questionnaire was sent to 192 institutions; 61 failed to respond. Of the nation’s 114 medical schools, 15 have no rheumatology program whatsoever. Of the 131 institutions responding, 16 have no full-time MDs; 25 have only one; and 26, only two. The minimum critical mass for a functional rheumatic disease unit is four rheumatologists per unit. Ninety had no full-time PhDs. Moreover 34 institutions had no part-time rheumatologists, and 25 had only one. More than two-thirds of the responding institutions stated that they did not have edough rheumatologists to carry on their professional education programs. There was an even greater dearth of young people in training. Of the 131 responding institutions, 77 had no clinical fellows, 110 had no M D research fellows, and 114 had no PhD research fellows. These figures speak for themselves. The situation concerning training in the Allied Health Professions is even worse, the programs being only sparsely populated or, for the most part, unstaffed.
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Overall, then, manpower needs are such that I agree with Dr. Charles L. Christian, who said in 1968 at a conference on education that “There should be for every person of quality who desires training in rheumatic disease an opportunity regardless of what his goal may be” (1). Now I would like to share with you some of the deliberations of CEMPAF, the Committee for the Evaluation of the Medical Programs of The Arthritis Foundation. This ad hoc committee was appointed in 1973 “to consider the medical and scientific objectives of The Arthritis Foundation with a view to establishing programs, goals, and priority guidelines for use over the next ten years. These should not be specifically related to current fund availability . . . Although CEMPAF is asked to deal primarily with the national scientific program of The Arthritis Foundation, the various interdigitations of this with local programs should be scrutinized with a view to recommending changes in either which would be of mutual benefit.” I believe you will agree that this is a gargantuan, almost impossible task. Yet the committee, which was a representative one, met on several occasions, always with a comprehensive agenda. Current national and chapter, including AHP, activities, and various governmental programs were reviewed. The highly valuable data on chapters that are presented above were not available to the committee. CEMPAF also intended to review other arthritis foundations, such as the Canadian Arthritis and Rheumatism Society, and foundations in other health fields such as cancer and heart disease. The committee did review the deliberations of its research committees; it reviewed selected chapter programs defined by the CMCC; and it sought the views of others outside of the committee. After full discussion, CEMPAF began to assemble its “laundry list” and to consider priorities among the various programs. At a meeting in December 1973 a vote was taken to decide what the priorities for the various medical programs would be. An effort was made to base the decisions on inherent merit, that is, without regard to any governmental programs. Table 11 details the results of that vote. Research fellowships were given the highest priority, next national planning, followed by support of clinical fellowships, and then research grants themselves. Close behind was support for establishing a rheumatology program in every medical school, and support of junior faculty. Then came support for arthritis centers, followed by professional education and public education, and cooperative research programs such as the data bank, drug testing, and the like. Trail-
Table 11. Priorities for Medical Programs*
Ideal: No Governmental Programs I. Research fellowships 2 . National planning 3 . Clinical fellowships 4. Research grants 5. Rheumatology program in every medical school 6. Junior faculty 7. Arthritis centers 8. Professional education 9. Public education 10. Cooperative research programs I 1. Residency training 12. Established investigators
*CEMPAF straw poll (December 1973).
ing the field was support for residents and established investigators. Another vote (Table 12) to determine priorities was based on a realistic consideration of what governmental programs were operative at that time. The priority list was consequently quite different. At the top of the list was support for clinical fellowships, followed by the desire for a rheumatology program in every medical school. The committee wanted research fellowships to be maintained and to provide support for junior faculty. CEMPAF was still interested in national planning, professional and public education, and to a lesser degree, arthritis centers. Support for individual research grants was near the bottom of the list, in view of the federal support for this vital activity. I emphasize that these priorities are approximate at best. They are not official in any sense; they just reflect the thinking of a small group of people with diverse interests who were asked to serve on a committee with a nearly impossible task. However I wish to share Table 12. Priorities for Medical Programs* Realistic: With Gouernmental Programs I . Clinical fellowships 2. Rheumatology program in every medical school 3 . Research fellowships 4. Junior faculty 5 . National planning 6. Professional education 7. Public education 8. Arthritis centers 9. Established investigators 10. Research grants 1 1 . Cooperative research programs 12. Residency training
* C E M P A F straw poll (December 1973).
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CEMPAF‘s thoughts with you, as we plan for the future. Part of the thinking of CEMPAF was influenced by a review of the developments in Canada over the past 20 years. In the 1950s, under the leadership of Mr. Edward Dunlop and Dr. Wallace Graham, the Canadian Arthritis and Rheumatism Society formulated a comprehensive stategy in the field of rheumatic diseases in Canada and published it in a remarkable document entitled “Arthritis: Plan for Attack” (2). The preface states that “the Society recognizes that a problem so extensive can be solved only through many years of tireless effort, and that all plans must be such that they can be easily modified in the light of newly-achieved knowledge, and of local conditions.” They reviewed the problem of rheumatic disease in Canada, recognizing the causes of past neglect, and constructed a detailed plan for an attack according to prescribed stages of development. They have been very successful in raising funds and initiating programs. In 1972 they had an annual research budget of $1.2 million for a population of 20 million. These figures compare with $2.5 million for the United States with a population of 200 million. Therefore Canada has been able to generate five times more per capita than has the United States. Their funds are used primarily in three categories: a) junior faculty, b) fellowships, and c) research grants. They have developed one comprehensive center in Toronto and a special treatment center in Vancouver, and they are starting to improve other centers. In their support of the junior faculty they negotiate with the medical schools for comparable input to the program from the medical schools themselves. Interestingly, these actions are taking place in a country with broader health insurance coverage than we have in the United States. CEMPAF was able to obtain data from one of the other voluntary health agencies in the United States, the American Cancer Society, which might be termed the “Hertz” of the health foundations. Table 13 compares the budget and expenditures Table 13. Budget and Expenditures (1972) ~
~
Arthritis
Cancer
$9,678,000
$84,122,000
23% 12 17 21 14 13
33%
~
TOTAL Research Professional education Public education Service Fund raising Administration
10
17 20 I1 9
Table 14. Allocation of Contributions (1972)
National Research et a1 Development et al Local Research et a1 Other
Arthritis
Cancer
35% 12% 23% 65% 16% 49%
40% 27% 13% 60%
as of 1972 of The Arthritis Foundation with those of the American Cancer Society. Their income is nine times that of ours. Both organizations spend similar proportions of their income for professional education, public education, and service. The Cancer Society spent a smaller proportion on fund raising and administration, and a significantly larger proportion for research and training. A comparison of the allocation of resources in the two societies (Table 14) shows that a slightly larger proportion of contributions is assigned to national programs, 40% compared to our 35%. Interestingly, a much greater proportion of their national expenditures is devoted to research, in contrast to development. Table 14 includes recent data from the Chapter Medical Program Directory, indicating that 16% of total funds are being used for local research activities. This table then gives The Arthritis Foundation a total of 28% for research and training programs, an amount that is larger than what was estimated when CEMPAF met in 1973 and that is most encouraging. Table 15 lists the various medical programs that Table 15. American Cancer Society Medical Programs ( I 972) Extramural research Research grants (competing) Institutional research grants Grants for training and support of personnel Postdoctoral fellowships Faculty research awards Scholars in cancer research awards Research professorships International fellowships Intramural research Epidemiologic and statistical research Statistical information service National clinical fellowship program Clinical fellowships Junior faculty fellowships Division (“chapter”) support programs Professorships of clinical oncology
$2 1,676,000
$79 1,000
$ 1,000,000
$2,600,000
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36
are supported by the American Cancer Society. I believe you will agree that it provides a “deluxe” menu, “fourstar” on the Michelin scale. This is all the more remarkable because cancer has an additional feast of government programs. Their extramural research programs comprise the vast majority of their expenditures. They are administered nationally and include competing research grants, institutional research grants, and several categories of support for research personnel: fellowships, faculty research awards, cancer research scholars, research professorships, and even international fellowships. The Cancer Society allocates about $800,000 for intramural research of an epidemiologic and statistical nature at the central office. They also have a national clinical fellowship program, including support for junior faculty. Recently the Society’s divisions, which are equivalent to A F chapters, have supported various programs, such as Professorships of Clinical Oncology. This listing, and similar lists from other foundations, suggests some admirable goals. Let us note some of the policies of the American Cancer Society (Table 16). First, the national office sets up guidelines to help the divisions develop programs to meet their needs. Our chapters have asked for similar guidelines. No salary support is provided for faculty with tenure position at the university. This policy makes good sense. The official policy of the ACS is “to carry on activities which may contribute to the control of cancer, except the actual treatment of cancer patients, or the actual ownership and operation of hospitals, etc.” United Campaign funding is not accepted, and one of the ACS bylaws states that “each Division presently Table 16. American Cancer Society Policies (1972)
I . National office sets up guidelines to help divisions develop programs to meet their needs. 2. Maximum allowance for indirect costs: 25%. 3. No salary support for faculty with tenure. 4. “Carry o n activities which may contribute to the control of cancer, except the actual treatment ofcancer patients or the actual ownership and operation of hospitals, etc. . . .” 5 . United Campaign funding not accepted. 6. The ACS bylaws state that ‘‘. . . each Division presently supporting research be urged to reconsider this activity and requested to submit all applications for research to the National Society for evaluation; that when time is not vital, the Division await the report from the National Office before taking action; that the Division, though not bound by the recommendation of National’s review committee, is expected to give great weight to them; and further, that all Divisions supporting local research shall transmit a copy of each investigator’s final summary report to the National Office.”
supporting research [should] be urged to reconsider this activity and requested to submit all applications for research to the National Society for evaluation; that when time is not vital, the Division await the report from the National Office before taking action; that the Division, though not bound by the recommendation of National’s review committee, is expected to give great weight to them; and further, that all Divisions supporting local research shall transmit a copy of each investigator’s final summary report to the National Office.” In presenting this material to you, I am not necessarily subscribing to it, but merely reporting their policies. Interesting programs were found in other societies. For example the American Heart Association, the “Avis” of the health agencies, has organized several councils devoted to areas of special interest, such as rheumatic fever, congenital heart disease, and hypertension. The AF could do the same; it has the Scleroderma Club and now an Organizing Committee for Pediatric Rheumatology. Orthopedic rheumatology, immunology, etc, could be added. I can only touch on the problems of patient care. The best education possible must be provided for all those who will be caring for patients with rheumatic disease at all levels. It is necessary to define, refine, and redefine guidelines for practice, and to study and improve referral patterns to make them optimally efficient. The new Membership Directory will help a great deal in this. Attention must also be realistically directed to the numbers of rheumatologists needed and to correction of the horrendous maldistribution. In summary (Table 17) The Arthritis Foundation wants, deserves, and will be strengthened by a clear statement of its medical strategy. Rheumatology is a Table 17. Summary
I . The Arthritis Foundation desires, and should have, a clear expression of its “medical strategy.” 2. A “research strategy,” as of 1972, is available. Our research missions are many, diverse, evolving, and changing. Periodic review o f research planning is desirable. 3 There are great deficiencies in research, education, and patient care (in no particular order) for the rheumatic diseases. 4. Priorities for the various medical programs can and should be determined according to prevailing needs and governmental programs. 5 . Certain programs should be chapter-operated, others nationaloperated, and still others by chapter-national cooperation according t o national and local needs. 6. Planning by the A F should be persistent in both medical and nonmedical programs, in concert with governmental planning, and flexible.
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major, exciting, complex field of medicine with several missions, some related to one another, but most being distinct and unrelated. The field has expanded greatly. However there are great unmet needs in support for research, education, and patient care. Our funds are precious; we must spend them wisely. We need to improve the mechanisms for determining priorities for medical programs, being ever mindful of changing needs and government programs. Certain programs are best carried out by the chapters; others by the national office; most require intelligent, selfless, and friendly chapternational cooperation to meet both national and local needs in the most effective manner. Selective programming will be required. Planning should be persistent,
37
cooperative with government and other agencies, and above all flexible and innovative. This is a very special attribute of a successful voluntary health agency. We must plan, produce, and meet our needs. I am optimistic that we shall d o so.
REFERENCES 1 . Christian CL: Training t b future clinical investigator of
rheumatology: recruitment and selection. Arthritis Rheum 11:277-279, 1968 (Suppl) 2. The Canadian Arthritis and Rheumatism Society: Arthritis: plan for attack. Can Med Assoc J 62:34, 1950
FIRST INTERNATIONAL SYMPOSIUM ON HLA AND DISEASE PREDISPOSITION TO DISEASE AND CLINICAL IMPLICATIONS Paris- Palais des Congres-June 23-25, I976 The association of HLA antigens with numerous diseases is now well documented. The clinical implications of these recent discoveries on nosology, diagnosis, prognosis, and prevention will be discussed by clinicians and biologists: Several workshops, including ones on rheumatology and immunopathology, will cover the different facets of this new approach to epidemiology and heriditary diseases. The possible mechanisms and biologic significance of association will be considered by geneticists, virologists, and immunologists. Your participation is welcome. For further information write to: Congres Services, 1, Rue Jules Lefebvre, 75009 Paris, France. Pro$ Jean Dausset ProJ Arne Svejgaard Chairmen
PRESIDENTIAL ADDRESS
WHITHER OR WITHER LAWRENCE E. SHULMAN Members of the American Rheumatism Association, Ladies and Gentlemen, Friends and Guests. My discussion today is twofold: first, a somewhat concise report of several important events of the past year; and then, in somewhat greater depth, certain considerations with respect to current needs and planning for the future. This has been one tumultuous year for the American Rheumatism Association, a year of accomplishments, anxiety, anguish, new awareness, and actior,. On January 4,1975, the President signed into law the “National Arthritis Act of 1975” (S-2854). Doubtless this has been the most significant accomplishment of the year. Time constraints make it impossible to pay proper tribute to all those who participated in its movement and passage. Special gratitude must go to Senator Alan Cranston of California and Representative Paul Rogers of Florida, and their competent and courteous assistants, Ms. Louise Ringwalt and Mr. Dack Dalrymple respectively; to the Government Liaison Committees of the Medical Administrative Committee (MAC) and The Arthritis Foundation; to the Workshop on Arthritis Centers; t o all of you; and particularly to Mr. David D. Shobe, whose energetic expertise prodded Presented at the National Meeting of the American Rheumatism Association, June 5, 1975, New Orleans, Louisiana. Lawrence E. Shulman, M.D., Ph.D.: Director, Connective Tissue Division, The Johns Hopkins Hospital, Baltimore, Maryland 21205, and President, American Rheumatism Association, June 1974 to June 1975. Address reprint requests t o Dr. Shulman. Arthritis and Rheumatism, Vol. 19, No. 1 (January-February 1976)
and piloted us throughout. As most of you know, the National Arthritis Act authorizes the formation of a National Commission on Arthritis to develop an Arthritis Plan, an Arthritis Coordinating Committee for all federal programs in arthritis, various demonstration projects, a national Arthritis Data Bank, Comprehensive Arthritis Centers, and a new office of Associate Director for Arthritis and Related Musculoskeletal Disorders within the NIAMDD. The commission was appointed, met first on April 7, 1975, and is hard at work under the able chairmanship of Dr. Ephraim Engleman of San Francisco. Research activities continue to be highly productive. This fact is amply documented by the record number of 3 16 abstracts submitted for the Scientific Program of this meeting. The previous record was 201 abstracts 2 years ago in Los Angeles. Diverse new areas are being explored. I have admired how rapidly the exciting discovery of the great frequency of the specific histocompatibility antigen, HL-A W27, in ankylosing spondylitis has been exploited to provide new insights and concepts concerning the pathogenesis of the spondylitic group of rheumatic diseases. The committee activities of both the ARA and the A F have never before achieved such a high degree of productivity. I shall be referring to several of their reports and findings later. As to our anxieties, there have been many. There have been administrative disruptions of major dimensions. One need only look at the key resignations offirst, our Medical Director, and of then the Executive Director of The Foundation. Within The Foundation there
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have been strong disagreements with respect to policies and organization; these conflicts have been with us for some time. Federal support for research and training in the rheumatic diseases continues to dwindle and remains uncertain. As seen in Table 1, the number of training grants and trainees continue to diminish, on their way to extinction. The “old” research fellowships are being phased out; the “new” research fellowships (with their pay-back provisions) provide only 20 positions, divided equally between MDs and PhDs, each year. Support for individual research grants and program-project grants remains stable, but economic inflation erodes their value. Our anguish stems from a deep frustration in not being able to find support for the large number of highly qualified young physicians who want clinical and/or research training in rheumatology. It is ironic that at a time when our field-as a consequence of successful growth in research and educational programs sponsored by both the AF and the NIH previously-has become very attractive to the best of our young people, very few training positions are available to them. In a word, we have “arrived,” but our “well is dry.” We were made aware of the attitudes of our A F chapter leaders by an analysis of responses to a comprehensive questionnaire prepared by an ad hoc committee, chaired by Mr. A. D. Poole of San Diego, and sent to the principal volunteer executive officers of each chapter. In the medical and scientific area the chapters felt the need for more scientific information from the ARA and MAC in lay terms and with greater “emotional emphasis.” This was to be expected. Not entirely expected, however, were responses indicating that significant majorities of the chapter leaders thought: first, that national research funds should be awarded on the basis of quality and peer review without regard to geographic distribution; second, that national guidelines should be created for chapter and medical programs; and third, that chapter support of local research and training should be coordinated with the national center grants Table 1. Arthritis Research Training ( N I A M D D )
Training grants Trainees Fellows (old type) Fellows (new type) RCDAs
* Projected
I912
I975
I976*
30 76 I2 8
24 37 3 20 I2
15
-
-
and fellowship program. We were also made aware of the huge educational needs in rheumatology at all levels across the land by an equally comprehensive survey of all teaching centers conducted by the Professional Education Committee of the AF, chaired by Mr. George Kuehn of Boston. All of the above situations demanded action; the response was most gratifying. With the strong support of the A F representatives to MAC, we were able to persuade the Budget Committee and the A F board to increase the research budget this year, 1975-1976, by $488,00O-$180,000 more for approved Fellowships and $308,000 more for the approved centers-in order to maintain our research and educational establishment for its own value, and to prepare for implementing the National Arthritis Act. Several important and productive meetings, including both AF board and medical leaders, were held to consider major improvement in our organizational structure. Search committees for the Department of Medical and Scientific Affairs, with Dr. Charles L. Christian as Chairman, and for the AF’s Executive Director, with Mr. Poole as Chairman, were formed and are hard at work.* The administrative breach has been filled admirably. Dr. Emmanuel Rudd of New York City kindly agreed to become the Consulting Medical Director, and Mr. Charles B. Harding, Chairman of the Board of Directors, has assumed the essential responsibilities of Mr. Daniel Button, the former executive director. We are deeply indebted t o them both, as well as to the national staff, which has carried on magnificently. A special vote of thanks goes to the devoted, talented, and indispensable Executive Secretary of the ARA, Ms. Lynn Bonfiglio. Pervading all of these concerns has been a persistent request, from the A F at all levels, for a defined medical strategy for The Foundation. I shall attempt to address myself to the issues pertaining t o this clear need. Before doing so we must restate the goals of The Arthritis Foundation (and the ARA), which, in broad terms, are: a ) to develop those bodies of new knowledge of the causes, pathogenesis, or disease mechanisms of the rheumatic diseases that will allow the development of new means of treatment (even cure) and prevention; and b) to do everything possible to provide, for all those afflicted with one or another of the rheumatic diseases, the best possible care. Table 2 summarizes the medical portion of the report to The Arthritis Foundation by the consulting
*Mr. Clifford Clarke was selected as Executive Director in August 1975.
WHITHER OR WITHER
Table 2. “Meeiing Emergin Needs” Repori to The Arthritis Foundaiion by Arthur %. Liiile. Inc (January I9751 I . Clearer expression of the medical stategy of AF: a. National perspective t o local efforts b. Justification for funds by chapters t o national c. Recruit volunteers and contributors 2. Progress made in the fight against arthritis: a. “Current state of theart” b. Most promising avenues for further progress 3. Process by which medical dollars are allocated: How? How much? To whom? Why? 4. How are medical funds employed? Benefits? 5 . Allocating funds among research, training, patient care 6. Clear distinction between national and chapter medical programs 7. What are the chapters doing medically?
firm of Arthur D. Little, Inc, which conducted a survey of the A F last fall designed to analyze chapter-national relationships and to suggest improvements. In doing so they visited 17 chapters and interviewed several persons. They found that the chapters wanted a more lucid expression, in lay terms, of the AF medical strategy stating that it would provide a national perspective to local efforts. Chapters also requested a clear justification for their contribution to national and help to recruit volunteers and interest potential contributors. More specifically, the chapters wanted to know more about the progress being made in the fight against arthritis and the most promising avenues for future advances. All this information is readily available in the so-called Thomas Report of the National Advisory Committee on the Future of Arthritis Research; it is available in lay terms, condensed into a booklet. The chapters then wanted to know how the medical dollars are allocated. The answer is that money is allocated by the Research Committee of MAC and its subcommittees, with peer review and rotating membership, by approving applications of quality to the fullest in open competition, and by determining the “best fit” to various programs (fellows, centers) according to estimates of relative need. Concerning the question of benefits, the research fellowships attract and support the academic leaders of the future, as well as indirectly support research itself; and the centers, although the support for each is small, have helped to keep rheumatic disease units together as the NIH training grants have faded away. The national funds have supported research and training, not patient care. With respect to the distinction (at times clear, but usually not) between national and chapter programs and what the chapters are doing medically, the facts are now gathered for the first time in a superb document just presented to MAC: the
31
Chapter Medical Program Directory, prepared by a CMCC subcommittee chaired by Dr. Joseph E. Levinson of Cincinnati. It contains a long-sought collection of important data, some of which I shall present shortly. The Thomas Report includes a series of recommendations (Table 3) prepared in 1972 by a group of learned men of diverse research interests. The first recommendation is to mount an extensive effort to find a viral (or bacterial) agent as a cause of arthritis. There are one or two viruses, Hepatitis B and rubella, that cause a self-limited form of arthritis. The authors of the Thomas Report were really thinking of a “slow virus” as a cause of chronic arthritis, such as that in rheumatoid arthritis or in SLE; the search is still on. A new form of bacterial arthritis due to Yersinia has only recently been appreciated. Second, they suggested more research to pinpoint the immunopathology of rheumatoid arthritis; there are several papers on this subject at this meeting. Third, they urged a further clarification of the mechanisms of inflammation; pertinent to this effort is the interesting paper, also presented a t this meeting, about the production by rheumatoid synovium of prostaglandin E, which can cause resorption of bone. Techniques for joint replacement are being extended beyond the hip, to the knee and other joints. At this meeting methods for total elbow replacement and an improved Clayton operation for the feet are being presented. More epidemiologic studies are needed. But rheumatology research advances. Were this committee to convene again in 1975, it would probably add at least one other recommended category, namely genetic research, highlighting the HL-A system and other markers of immune responsiveness. Table 4 lists some of the rheumatic diseases that have been discovered within the past 10 years or have come to the forefront of thinking and interest during that time. The diversity of the group is to be noted. It must be stressed both to our colleagues in The FoundaTable 3. National Advisory Commiiiee on the Future of Arihriiis Research (1972) Recommendation
I . Identify possible viral agent a s cause of arthritis 2. Pinpoint immunopathology in rheumatoid arthritis 3. Clarify mechanisms of inflammation 4. Broaden techniques for joint replacement 5.
Epidemiologic studies
Yield New drug, vaccine Blocking agents Chemical blockade Other joints, better material New theories
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Table 6. Individual Research Grants (1972)
Table 4. “Recent” Rheumatic Diseases Arthritis of viral hepatitis Yersinia arthritis Behcet’s syndrome Caplan’s syndrome Polymyalgia rheumatica Mixed connective tissue disease CREST syndrome Relapsing polychondritis Pseudogout Hemochromatosis
Applications Number awarded Total support Range of chapter support
Chapters
National
I72 I02 $497,800
-
$500-$79.800
Twenty-seven chapters gave grants; 12 chapters gave grants of $10,000 or more (84.3%of total funding).
tion and to the public that there are many missions in rheumatology. Yes, we do look forward to key “breakthroughs’’ in understanding rheumatoid arthritis and SLE, but the task is much broader than that. There are in fact many research strategies and the field is constantly changing. Therefore it is important to create the mechanisms by which research strategies will remain ever current. There is much to be learned from the wealth of data assembled in the Chapter Medical Program Directory. Some of the key findings of this report follow. First, in Table 5, in 1972 chapter support for fellowships almost equalled that of the research fellowship program awarded nationally. Competition for these fellowships was a little less keen in the chapters than in the national program. The range of chapter support is very wide. A very small number of chapters, namely 6, awarded 40 of the 51 fellowships, comprising almost 80% of the total funding. I do not have the breakdown between clinical and research fellowship support in the chapters. It is a pity that in 1972 only $15,000 was awarded for Allied Health Professional Fellowships in the entire United States. Table 6 shows that the chapters awarded another $497,800 to support individual research grants. Sixtytwo per cent of the applications were funded. Again there is a great range in research support among the chapters, and again it was a small number of chapters, 12, that gave grants of $10,000 or more, comprising 84%
of the total funding. Some might debate the value of a research grant of $500. Interestingly, the chapters that gave research grants were frequently not the same as those that supported fellows. The committee found that only half of the research grant applications had been subjected to any critical review, and that outside peer review occurred only rarely. Over $600,000 were allotted by 33 chapters as institutional grants to the medical schools (Table 7). The total awarded by the chapters is greater than the total expended for the entire national center grants program. Again the range of support is wide: only a small number of chapters, 13, provided 80% of all the funding; here too the chapters giving institutional grants were not necessarily the same as those supporting fellows or individual research grants. These institutional grants are probably of great value, providing, as do the national center grants themselves, the important “critical glue” that keeps rheumatic disease units together during this time of federal “fall-off.’’ To summarize these three programs for research and training in 1972 (Table 8), the overall support by chapters actually exceeded the total support by national and comprised 62% of all Arthritis Foundation support for research and training. (These are data for 1972. The current national expenditures for 1975 are much higher, totaling approximately $1,800,000.) The subcommittee also found, by analyzing their data, that overall the larger chapters gave a much higher priority to funding research and training programs than did the smaller chapters.
Table 5. Fellowship Training (1972) Chapters
National
81
$397,400
I09 47 $440,500
$1.000-$105,000
$7.500-$13.000
Table 7. Institutional Grants (1972)
~
Applications Number awarded Total awards Range of chapter support
51
Seventeen chapters gave awards; 6 chapters supported 40 of the 51 fellowships (78.4% of total funding).
Number awarded Total support Range ofchapter support
Chapters
National*
33 $632,000 $200-$245,000
38 $508,000 $5.300-$18,200
Twenty-two chapters gave grants; 13 chapters gave grants of $10.000 or more (79.6% of total funding). * Arthritis Clinical Research Center Grants.
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Table 10. Patient Services by Chapters ( I972)
Table 8. Research and Training (1972) Chapters
N urn ber Fellowships Research grants Institutional grants
49 $397,400 $497,800 $632,000
TOTAL
$1,527,200
National
Total
$440,500 $508,000
$837,900 $497,800 $ I , 140,000
$948,500
$2,475,700
-
Table 9 shows that the chapters spent almost three-quarters of a million dollars, or roughly one-third of their total expenditures, for various patient services. These exclude the salaries of the chapter staff and consultation staff. A great diversity of patient services were rendered by chapters. Table 10 lists them in the order of number of chapters providing each individual service. Most frequent was the provision of information to patients, such as the listing of clinics and physicians. Next was the support of established arthritis clinics, followed by loan closets and group education classes. Chapters also bought therapeutic equipment and provided transportation and home care for the patients in their community. Next were funds used for developing new arthritis clinics, followed by support for arthritis social clubs. Twenty-four of the chapters paid for drugs, 20 paid for clinic fees, and 18 paid laboratory fees. Twenty chapters supported Allied Health Professionals; 19, the visiting nurse associations; 15, social services; and 11, vocational guidance. Twelve chapters funded craft shops and 7 supported traveling clinics. In general, this is a large and impressive menu of services to patients. One of the most interesting findings of the Chapter Medical Program Subcommittee is that those chapters that obtained their income largely by independent fund raising spent most of their funds in research and training programs, whereas those chapters supported largely by the United Way expended most of their funds for patient services. The chapters were asked by the subcommittee how they would use their funds if more funds were to become available. They responded in the following orTable 9. Chapter Patient Services Expenditures* ( I 972) Number ofchapters Total Range
* Excludes salaries
56
$706,000 $500-543,900
of chapter staff and consultants.
Service
Chapters
Patient information Established arthritis clinics Loan closets Group education classes Therapeutic equipment Transportation Home care programs Developing new clinics Arthritis social clubs Drug payments Allied health professionals Pay clinic fees Visiting nurse associations Pay laboratory fees Social services Craft shops Vocational guidance Traveling clinics
66 51 45 43 31 29 29 28 27 24 20 20 19 18
15 12 II 7
der: a) fellowship training, b) establishment of new clinics, and c) more research grants. What are the views of the directors of Arthritis Programs across the nation? What personnel do they now have and what do they need? In 1974 a searching questionnaire was constructed and distributed to all directors of Arthritis Teaching Programs and other medical institutions by the Professional Education Committee of The Foundation. The results of that most valuable survey are indeed alarming. Here are some of their preliminary data. The questionnaire was sent to 192 institutions; 61 failed to respond. Of the nation’s 114 medical schools, 15 have no rheumatology program whatsoever. Of the 131 institutions responding, 16 have no full-time MDs; 25 have only one; and 26, only two. The minimum critical mass for a functional rheumatic disease unit is four rheumatologists per unit. Ninety had no full-time PhDs. Moreover 34 institutions had no part-time rheumatologists, and 25 had only one. More than two-thirds of the responding institutions stated that they did not have edough rheumatologists to carry on their professional education programs. There was an even greater dearth of young people in training. Of the 131 responding institutions, 77 had no clinical fellows, 110 had no M D research fellows, and 114 had no PhD research fellows. These figures speak for themselves. The situation concerning training in the Allied Health Professions is even worse, the programs being only sparsely populated or, for the most part, unstaffed.
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34
Overall, then, manpower needs are such that I agree with Dr. Charles L. Christian, who said in 1968 at a conference on education that “There should be for every person of quality who desires training in rheumatic disease an opportunity regardless of what his goal may be” (1). Now I would like to share with you some of the deliberations of CEMPAF, the Committee for the Evaluation of the Medical Programs of The Arthritis Foundation. This ad hoc committee was appointed in 1973 “to consider the medical and scientific objectives of The Arthritis Foundation with a view to establishing programs, goals, and priority guidelines for use over the next ten years. These should not be specifically related to current fund availability . . . Although CEMPAF is asked to deal primarily with the national scientific program of The Arthritis Foundation, the various interdigitations of this with local programs should be scrutinized with a view to recommending changes in either which would be of mutual benefit.” I believe you will agree that this is a gargantuan, almost impossible task. Yet the committee, which was a representative one, met on several occasions, always with a comprehensive agenda. Current national and chapter, including AHP, activities, and various governmental programs were reviewed. The highly valuable data on chapters that are presented above were not available to the committee. CEMPAF also intended to review other arthritis foundations, such as the Canadian Arthritis and Rheumatism Society, and foundations in other health fields such as cancer and heart disease. The committee did review the deliberations of its research committees; it reviewed selected chapter programs defined by the CMCC; and it sought the views of others outside of the committee. After full discussion, CEMPAF began to assemble its “laundry list” and to consider priorities among the various programs. At a meeting in December 1973 a vote was taken to decide what the priorities for the various medical programs would be. An effort was made to base the decisions on inherent merit, that is, without regard to any governmental programs. Table 11 details the results of that vote. Research fellowships were given the highest priority, next national planning, followed by support of clinical fellowships, and then research grants themselves. Close behind was support for establishing a rheumatology program in every medical school, and support of junior faculty. Then came support for arthritis centers, followed by professional education and public education, and cooperative research programs such as the data bank, drug testing, and the like. Trail-
Table 11. Priorities for Medical Programs*
Ideal: No Governmental Programs I. Research fellowships 2 . National planning 3 . Clinical fellowships 4. Research grants 5. Rheumatology program in every medical school 6. Junior faculty 7. Arthritis centers 8. Professional education 9. Public education 10. Cooperative research programs I 1. Residency training 12. Established investigators
*CEMPAF straw poll (December 1973).
ing the field was support for residents and established investigators. Another vote (Table 12) to determine priorities was based on a realistic consideration of what governmental programs were operative at that time. The priority list was consequently quite different. At the top of the list was support for clinical fellowships, followed by the desire for a rheumatology program in every medical school. The committee wanted research fellowships to be maintained and to provide support for junior faculty. CEMPAF was still interested in national planning, professional and public education, and to a lesser degree, arthritis centers. Support for individual research grants was near the bottom of the list, in view of the federal support for this vital activity. I emphasize that these priorities are approximate at best. They are not official in any sense; they just reflect the thinking of a small group of people with diverse interests who were asked to serve on a committee with a nearly impossible task. However I wish to share Table 12. Priorities for Medical Programs* Realistic: With Gouernmental Programs I . Clinical fellowships 2. Rheumatology program in every medical school 3 . Research fellowships 4. Junior faculty 5 . National planning 6. Professional education 7. Public education 8. Arthritis centers 9. Established investigators 10. Research grants 1 1 . Cooperative research programs 12. Residency training
* C E M P A F straw poll (December 1973).
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CEMPAF‘s thoughts with you, as we plan for the future. Part of the thinking of CEMPAF was influenced by a review of the developments in Canada over the past 20 years. In the 1950s, under the leadership of Mr. Edward Dunlop and Dr. Wallace Graham, the Canadian Arthritis and Rheumatism Society formulated a comprehensive stategy in the field of rheumatic diseases in Canada and published it in a remarkable document entitled “Arthritis: Plan for Attack” (2). The preface states that “the Society recognizes that a problem so extensive can be solved only through many years of tireless effort, and that all plans must be such that they can be easily modified in the light of newly-achieved knowledge, and of local conditions.” They reviewed the problem of rheumatic disease in Canada, recognizing the causes of past neglect, and constructed a detailed plan for an attack according to prescribed stages of development. They have been very successful in raising funds and initiating programs. In 1972 they had an annual research budget of $1.2 million for a population of 20 million. These figures compare with $2.5 million for the United States with a population of 200 million. Therefore Canada has been able to generate five times more per capita than has the United States. Their funds are used primarily in three categories: a) junior faculty, b) fellowships, and c) research grants. They have developed one comprehensive center in Toronto and a special treatment center in Vancouver, and they are starting to improve other centers. In their support of the junior faculty they negotiate with the medical schools for comparable input to the program from the medical schools themselves. Interestingly, these actions are taking place in a country with broader health insurance coverage than we have in the United States. CEMPAF was able to obtain data from one of the other voluntary health agencies in the United States, the American Cancer Society, which might be termed the “Hertz” of the health foundations. Table 13 compares the budget and expenditures Table 13. Budget and Expenditures (1972) ~
~
Arthritis
Cancer
$9,678,000
$84,122,000
23% 12 17 21 14 13
33%
~
TOTAL Research Professional education Public education Service Fund raising Administration
10
17 20 I1 9
Table 14. Allocation of Contributions (1972)
National Research et a1 Development et al Local Research et a1 Other
Arthritis
Cancer
35% 12% 23% 65% 16% 49%
40% 27% 13% 60%
as of 1972 of The Arthritis Foundation with those of the American Cancer Society. Their income is nine times that of ours. Both organizations spend similar proportions of their income for professional education, public education, and service. The Cancer Society spent a smaller proportion on fund raising and administration, and a significantly larger proportion for research and training. A comparison of the allocation of resources in the two societies (Table 14) shows that a slightly larger proportion of contributions is assigned to national programs, 40% compared to our 35%. Interestingly, a much greater proportion of their national expenditures is devoted to research, in contrast to development. Table 14 includes recent data from the Chapter Medical Program Directory, indicating that 16% of total funds are being used for local research activities. This table then gives The Arthritis Foundation a total of 28% for research and training programs, an amount that is larger than what was estimated when CEMPAF met in 1973 and that is most encouraging. Table 15 lists the various medical programs that Table 15. American Cancer Society Medical Programs ( I 972) Extramural research Research grants (competing) Institutional research grants Grants for training and support of personnel Postdoctoral fellowships Faculty research awards Scholars in cancer research awards Research professorships International fellowships Intramural research Epidemiologic and statistical research Statistical information service National clinical fellowship program Clinical fellowships Junior faculty fellowships Division (“chapter”) support programs Professorships of clinical oncology
$2 1,676,000
$79 1,000
$ 1,000,000
$2,600,000
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36
are supported by the American Cancer Society. I believe you will agree that it provides a “deluxe” menu, “fourstar” on the Michelin scale. This is all the more remarkable because cancer has an additional feast of government programs. Their extramural research programs comprise the vast majority of their expenditures. They are administered nationally and include competing research grants, institutional research grants, and several categories of support for research personnel: fellowships, faculty research awards, cancer research scholars, research professorships, and even international fellowships. The Cancer Society allocates about $800,000 for intramural research of an epidemiologic and statistical nature at the central office. They also have a national clinical fellowship program, including support for junior faculty. Recently the Society’s divisions, which are equivalent to A F chapters, have supported various programs, such as Professorships of Clinical Oncology. This listing, and similar lists from other foundations, suggests some admirable goals. Let us note some of the policies of the American Cancer Society (Table 16). First, the national office sets up guidelines to help the divisions develop programs to meet their needs. Our chapters have asked for similar guidelines. No salary support is provided for faculty with tenure position at the university. This policy makes good sense. The official policy of the ACS is “to carry on activities which may contribute to the control of cancer, except the actual treatment of cancer patients, or the actual ownership and operation of hospitals, etc.” United Campaign funding is not accepted, and one of the ACS bylaws states that “each Division presently Table 16. American Cancer Society Policies (1972)
I . National office sets up guidelines to help divisions develop programs to meet their needs. 2. Maximum allowance for indirect costs: 25%. 3. No salary support for faculty with tenure. 4. “Carry o n activities which may contribute to the control of cancer, except the actual treatment ofcancer patients or the actual ownership and operation of hospitals, etc. . . .” 5 . United Campaign funding not accepted. 6. The ACS bylaws state that ‘‘. . . each Division presently supporting research be urged to reconsider this activity and requested to submit all applications for research to the National Society for evaluation; that when time is not vital, the Division await the report from the National Office before taking action; that the Division, though not bound by the recommendation of National’s review committee, is expected to give great weight to them; and further, that all Divisions supporting local research shall transmit a copy of each investigator’s final summary report to the National Office.”
supporting research [should] be urged to reconsider this activity and requested to submit all applications for research to the National Society for evaluation; that when time is not vital, the Division await the report from the National Office before taking action; that the Division, though not bound by the recommendation of National’s review committee, is expected to give great weight to them; and further, that all Divisions supporting local research shall transmit a copy of each investigator’s final summary report to the National Office.” In presenting this material to you, I am not necessarily subscribing to it, but merely reporting their policies. Interesting programs were found in other societies. For example the American Heart Association, the “Avis” of the health agencies, has organized several councils devoted to areas of special interest, such as rheumatic fever, congenital heart disease, and hypertension. The AF could do the same; it has the Scleroderma Club and now an Organizing Committee for Pediatric Rheumatology. Orthopedic rheumatology, immunology, etc, could be added. I can only touch on the problems of patient care. The best education possible must be provided for all those who will be caring for patients with rheumatic disease at all levels. It is necessary to define, refine, and redefine guidelines for practice, and to study and improve referral patterns to make them optimally efficient. The new Membership Directory will help a great deal in this. Attention must also be realistically directed to the numbers of rheumatologists needed and to correction of the horrendous maldistribution. In summary (Table 17) The Arthritis Foundation wants, deserves, and will be strengthened by a clear statement of its medical strategy. Rheumatology is a Table 17. Summary
I . The Arthritis Foundation desires, and should have, a clear expression of its “medical strategy.” 2. A “research strategy,” as of 1972, is available. Our research missions are many, diverse, evolving, and changing. Periodic review o f research planning is desirable. 3 There are great deficiencies in research, education, and patient care (in no particular order) for the rheumatic diseases. 4. Priorities for the various medical programs can and should be determined according to prevailing needs and governmental programs. 5 . Certain programs should be chapter-operated, others nationaloperated, and still others by chapter-national cooperation according t o national and local needs. 6. Planning by the A F should be persistent in both medical and nonmedical programs, in concert with governmental planning, and flexible.
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major, exciting, complex field of medicine with several missions, some related to one another, but most being distinct and unrelated. The field has expanded greatly. However there are great unmet needs in support for research, education, and patient care. Our funds are precious; we must spend them wisely. We need to improve the mechanisms for determining priorities for medical programs, being ever mindful of changing needs and government programs. Certain programs are best carried out by the chapters; others by the national office; most require intelligent, selfless, and friendly chapternational cooperation to meet both national and local needs in the most effective manner. Selective programming will be required. Planning should be persistent,
37
cooperative with government and other agencies, and above all flexible and innovative. This is a very special attribute of a successful voluntary health agency. We must plan, produce, and meet our needs. I am optimistic that we shall d o so.
REFERENCES 1 . Christian CL: Training t b future clinical investigator of
rheumatology: recruitment and selection. Arthritis Rheum 11:277-279, 1968 (Suppl) 2. The Canadian Arthritis and Rheumatism Society: Arthritis: plan for attack. Can Med Assoc J 62:34, 1950
FIRST INTERNATIONAL SYMPOSIUM ON HLA AND DISEASE PREDISPOSITION TO DISEASE AND CLINICAL IMPLICATIONS Paris- Palais des Congres-June 23-25, I976 The association of HLA antigens with numerous diseases is now well documented. The clinical implications of these recent discoveries on nosology, diagnosis, prognosis, and prevention will be discussed by clinicians and biologists: Several workshops, including ones on rheumatology and immunopathology, will cover the different facets of this new approach to epidemiology and heriditary diseases. The possible mechanisms and biologic significance of association will be considered by geneticists, virologists, and immunologists. Your participation is welcome. For further information write to: Congres Services, 1, Rue Jules Lefebvre, 75009 Paris, France. Pro$ Jean Dausset ProJ Arne Svejgaard Chairmen
