APPENDIX

Clerk's note: One section of transcript had not been received from the witnesses at the time the last of the copy for this volume was sent to the U.S. Government Printing Office (July 3, 1969). (See p. 368 for cross-reference). The following note was received from the representative for the witnesses:

BUCKNER, KY.

MR. ROBERT MOYER: Please be advised that testimony of May 20, pages 8905 through 8926 are approved as read. I am sending this on to our board of directors at Encyclopedia Britannica Educational Corp., to be reviewed and will return to you upon completion.

Again thank you,

ALLAN B. BRENNAN.

The transcript will be retained for the use of the committee if it is returned.

Another section of transcript was not returned in time to be printed in proper order (see page 1297 for cross-reference), but was received in time to be included at this point. The matter referred to follows:

WEDNESDAY, JUNE 4, 1969.

SPINAL CORD INJURY TREATMENT CENTERS

WITNESSES

HON. DONALD M. FRASER, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF MINNESOTA

DR. FRANK H. KRUSEN, CHAIRMAN, EXPERT MEDICAL ADVISORY COMMITTEE, AMERICAN REHABILITATION FOUNDATION

R. HOPKINS HOLMBERG, ASSISTANT EXECUTIVE DIRECTOR, AMERICAN REHABILITATION FOUNDATION

ALAN A. REICH, EXECUTIVE WITH POLAROID CORP. AND PRESIDENT, NATIONAL PARAPLEGIA FOUNDATION

JAMES H. SEMANS, PROFESSOR OF UROLOGY, DUKE UNIVERSITY; VICE PRESIDENT, NATIONAL PARAPLEGIA FOUNDATION

Mr. FLOOD. Congressman Fraser, we are happy that you could be with us today.

Mr. FRASER. Thank you very much.

Mr. Chairman and members of the committee, I just want to introduce these witnesses to you, Mr. Chairman. This is probably unneces

sary.

Mr. FLOOD. Indeed it is, but that is beside the point. We still welcome you doing so.

Mr. FRASER. Dr. Frank Krusen used to be head of the physical medicine section of the Mayo Clinic in Rochester, Minn., for many years. Mr. FLOOD. Congressman, we knew him when he was a boy.

(1449)

Mr. FRASER. Then you know of his special competence and integrity. Mr. Holmberg, on my right, is the assistant executive director of the American Rehabilitation Foundation, and also brings professional competence to the subject matter which they want to talk to the sub

committee about.

I think what they have to talk about is a very modest sum of money, but is a very important concern. I am sure the subcommittee will give it the consideration they have in the past.

Mr. FLOOD. We are very glad to have our colleague, Congressman Fraser, here, and that he has taken time from his busy schedule to be good enough to present the distinguished Dr. Frank Krusen and his associate, Mr. Holmberg.

Doctor, you have a statement. Of course, you want this in the record. don't you?

Dr. KRUSEN. Please, Mr. Chairman.

Mr. FLOOD. That will be done.

(Statements of Dr. Krusen, with attachments, and Mr. Holmberg follow :)

STATEMENTS OF DR. FRANK H. KRUSEN AND MR. R. HOPKINS HOLMBERG

STATEMENT OF FRANK H. KRUSEN, M.D.

Mr. Chairman, I am Dr. Frank H. Krusen, director of the Rehabilitation Institute at Tufts-New England Medical Center in Boston. With me is Mr. R. Hopkins Holmberg, administrator of the American Rehabilitation Foundation in Minneapolis.

Mr. Chairman, I have devoted my entire professional life to the rehabilitation of the disabled, through the practice of rehabilitation medicine. It has been my privilege to be associated during the past 10 years with three rehabilitation research and training centers first, at the University of Minnesota Medical Center in cooperation with the Kenny Foundation, when the first such centers were established-then at Temple University Medical School, and now at Tufts. I was for many years head of the department of physical medicine and rehabilitation at the Mayo Clinic in Rochester and have served as a consultant to most of the major agencies of Government in the health care field. My biographical material is available to the committee.

I am appearing here today as chairman of the expert medical advisory committee, American Rehabilitation Foundation, a private, nonprofit organization concerned with the advancement of rehabilitation medicine and with the rehabilitation of the disabled generally.

Mr. Chairman, of the many problems which today confront medicine in the United States, none are more serious than those in the dissemination of advances in medical technology and the efficient utilization of medical resources.

It is frustrating and saddening to see life or health prematurely interrupted by diseases for which adequate therapies have not yet been developed.

But in medical philosophy and ethics, it is nothing short of tragic irresponsibility to permit premature interruption of life and health by diseases which can be successfully treated or managed. The same recognition and respect which the Congress already has shown for these ethical and humanitarian standards now requires us to develop a concerted attack to help those who are paralyzed from injury to the spinal cord.

The reality and the magnitude of this problem can be seen in the lives of the more than 100,000 paraplegics and quadriplegics. The ranks of spinal cord injury victims swell by the thousands each year. Severe injury to the spinal cord may pose an immediate threat to life. In each and every case it poses a problem in rehabilitation. We now know enough, however, to be able to provide proper care and treatment for these patients. Our skills in this area represent some of the unintended consequences of our country's military engagements, and thousands of paralyzed veterans now lead reasonably normal and productive lives because of the efforts of specialists in rehabilitation medicine.

Military personnel represent only a fraction, however, of the total group of patients with disabling spinal cord injuries, and our Veterans' Administration

medical personnel and hospital facilities cannot conceivably respond adequately to the Nation's total problem in this area.

The problems which we face in providing effective help for spinal cord injury victims are threefold:

First, there is the problem that very few practicing physicians and surgeons have sufficient training to enable them to give proper care to patients with cord injuries. Very few private or community hospitals have a sufficient complement of staff to provide the total team effort which the rehabilitation of these patients requires.

Second, there is the problem of too few medical and rehabilitation facilities with model programs for spinal cord injury cases, that other centers might duplicate. This is a very important problem because it reduces the probability of State and local institutions building adequate programs in this area. Thus, the potential contribution of non-Federal sources to the construction of spinal cord injury centers tends to be undermined. Without the participation on nonFederal sectors of the economy, we cannot hope to sustain a viable, nationwide treatment program. But Federal funds must be used to lead the way.

Third, there is the problem of financing adequate treatment for spinal cord injury patients. Even if medical treatment and rehabilitation programs are started promptly, thus minimizing the overall cost, most patients cannot assume this expense, and even the commonly available medical insurance policies are frequently not entirely sufficient. Because of the financial problems, adequate rehabilitation programs are frequently postponed, and the result is inevitably one of irrecoverable financial and personal loss.

However, the possibilities of largely solving this financing problem are becoming more encouraging each day. The public programs such as vocational rehabilitation, medicare, medicaid, crippled children, and others already are helping. The same is true of voluntary and commercial insurance plans. I am convinced that both the public and private sectors would assume the major part of this financing task if they knew they were doing so in the framework of a national plan for the care of cord injury patients. But without such a national plan and system, financing remains a serious problem today.

These problems of inadequate medical training, too few model spinal cord injury treatment centers, and inadequate financial support for patient care can be attacked by creating a nationwide network of federally assisted cord injury treatment centers each having an effective outreach program in medical education.

The possibilities inherent in such a national chain have been well described by James Smittkamp, executive director, National Paraplegia Foundation, in his statement to the Expert Medical Committee of the American Rehabilitation Foundation (see appendix 1). The nucleus of professional personnel and treatment facilities to implement such a network already exists in the rehabilitation medicine research and training centers that are now partially funded by the Social and Rehabilitation Service, Department of Health, Education, and Welfare. Each of these 12 centers now treats spinal cord injury patients (for the list of these centers, see appendix 2). Each center has potentially available to it representatives from all of the medical and allied health disciplines necessary to form a rehabilitation team for spinal cord patients. Each center, by virtue of its relationships with teaching hospitals and medical schools, can establish outreach programs designed to help privately practicing physicians and surgeons care for spinal cord injury patients in their own communities. These research and training centers collectively represent the best professional talent and the best hospital facilities currently available to inaugurate a truly effective nationwide effort in caring for spinal cord injury patients.

Speaking for the American Rehabilitation Foundation, I propose that we begin this effort of building a network of spinal cord injury treatment centers by enabling the rehabilitation medicine research and training centers to formalize and intensify their programs in this area. I propose that the Social and Rehabilitation Service of the Department of Health, Education, and Welfare be given the responsibility of helping these centers to form a working nucleus during this coming fiscal year, and that the Social and Rehabilitation Service present to you at this time next year a plan for developing and expanding this embryonic effort into a national system of model comprehensive spinal cord injury treatment centers.

For this purpose I propose that the committee add to the research and demonstration budget the sum of $2.4 million for fiscal 1970. This is based on an average

cost of about $200,000 for each of the 12 research and training centers, with the understanding that the actual amounts will vary somewhat, upward or downward, according to the situation in each center.

The purposes for which these funds will be available should be left reasonably flexible. The major part of the funds should be considered as available for expanded patient care, with provision for their use to increase staffing, equip ment, and other directly related expenses where this represents the greatest opportunity to increase the center's effectiveness.

The Social and Rehabilitation Service also should be authorized to use a small percentage of these funds for direct contract or grant purposes, with one of the centers to be selected as the organizational planning agent in this effort. I consider this quite important to the success of the whole plan; it will be neces sary to devote concentrated time and thought and effort on the development of a comprehensive plan, its full consideration by all the other centers, as well as the many other public and private agencies and professional organizations which must be involved in this undertaking.

Mr. Chairman, I have come here today to urge and plead that you and your committee act to set this plan in motion. The plan is in the spirit of recent legislative advances and appropriations that help to insure the health rights of our citizens. The plan is in the tradition of the spirit and mission of the Social and Rehabilitation Service. But most of all, the plan testifies to our awareness of a critical health problem, to our awareness that we have the knowledge to attack the problem, and finally, to our commitment to advance the happiness. the health and the productivity of our citizens who might otherwise remain disabled.

While it will be necessary later to provide multiple sponsorship and cooperation among Federal governmental agencies and other nongovernmental agencies. the Social and Rehabilitation Service has accepted as part of its mission the responsibility for leading off with the development of regional comprehensive spinal cord injury centers.

Miss Mary E. Switzer, Administrator, Social and Rehabilitation Service, Department of Health, Education, and Welfare, has promulgated a 1968 position paper concerning the need for comprehensive spinal cord injury treatment. rehabilitation, research and training centers for all persons in need of such service, both military and civilian.

As its mission, the Social and Rehabilitation Service "adminsters the Federal Government programs of providing technical, consultative, and financial support of States, local communities, other organizations and individuals in the provision of social, rehabilitation, income maintenance, medical, maternal and child health, family and child welfare, and ther necessary services to the aged and aging, children and youth, the disabled and families in need."

Under its mission and through the bureaus, States and applicant grantees the Social and Rehabilitation Service is amply equipped to develop the program we propose.

Senator E. S. Muskie ("What Happens When Peace Breaks Out?" Saturday Review, May 24, 1969, pp. 12-14) said recently, "We are an enormously wealthy Nation ** * Our gross national product is approaching $1 trillion a year. We have failed to meet our social and environmental needs because we have not made a commitment to apply our resources to them. Making our commitments stick requires *** a determination to reduce unnecessary investments in arms *** and a willingness to accept the costs of building a better society."

The Congressional Joint Economic Committee's 1969 report to Congress (cited by Stark, J. R., "How Much Money For Plowshares?" Saturday Review, May 24, 1969, pp. 18–20) mentioned that "It is clear that there is an imperative need for a systematic review of expenditure programs on the basis of their relative costs and benefits. . . The place of economic development in our agenda of priorities should supersede less essential programs contained in the defense budget, space exploration, the supersonic transport, and certain public works projects."

One of the most important early steps in "building a better society" is to provide the facilities for rehabilitation of all our disabled Americans, and one of the greatest needs is for the provision of such facilities for the thousands of Americans having injuries to the spinal cord (the paraplegics and quadriplegics).

In the review of expenditure programs, it is our belief that the rehabilitation of our disabled citizens (physically, mentally, socially, and vocationally) takes the very highest priority.

The expenditure which we are recommending today is infinitesimal, as compared with the benefits to be achieved, and with the expenditures now being made in defense, space exploration, supersonic transport, and public works.

Furthermore, this small expenditure would actually save the taxpayers money in the long run, because it will take many of these disabled citizens off the welfare rolls and convert them to self-sufficient taxpayers who will add to, rather than take from, the State and Federal incomes.

James Smittkamp, executive director of the National Paraplegia Foundation, reported "All of us will benefit if we convert as many as possible of the 100,000 paraplegics from taxeaters to taxpayers."

The National Paraplegia Foundation suggests that "Care of the paraplegic may be divided into three stages: (1) crisis, (2) adaptation, and (3) stability." Sterling Brinkley, M.D., of the social and rehabilitation service staff reports that "Each year from 3,000 to 6,000 persons develop paraplegia or quadriplegia due to spinal cord injury."

The Good Samaritan Hospital, Phoenix, Ariz., reports the estimated average cost for rehabilitation per spinal cord injury patient is approximately $24,000. Annual maintenance is about $2,000.

David Barrie, chief examiner, rehabilitation, Liberty Mutual Insurance Co., has said "Individual cases of paraplegia can cost as much as a quarter of a million dollars over a lifetime in medical treatment, rehabilitation, special equipment, and specially designed or adapted living quarters."

Barrie aso stated that his company "long ago discovered that an investment of $1 in relatively good medical treatment and rehabilitation, saves $2.75 in cumulative and indemnity costs."

I am deeply grateful for the privilege of appearing here before your committee today, and I thank you for the opportunity to testify on this proposal. I am available for any questions the committee may have.

Thank you.

[APPENDIX 1]

STATEMENT TO EXPERT MEDICAL COMMITTEE AMERICAN REHABILITATION FOUNDATION BY JAMES SMITTKAMP, EXECUTIVE DIRECTOR, NATIONAL PARAPLEGIA FOUNDATION

Dr. Ellwood has asked me to discuss regional paraplegia centers in terms of the population that could benefit from them, plus activities they might carry on. I am pleased to do so with the understanding that whatever competence I bring to the subject derives not from professional training but from exposure to the problem through my position with NPF, a deep and, hopefully, fairly objective interest in paraplegia centers, and over 22 years as a paraplegic with experience in a variety of hospitals. Without doubt, I have accumulated some prejudices, but perhaps even those might be useful.

THE PROBLEM OF PARAPLEGIA

For the purpose of this presentation I will simply define paraplegia as paralysis from approximately the waist down and quadriplegia as paralysis from approximately the neck down with motor involvement in all cases and sensory and organic involvement in most. I will use the term, "paraplegia," as inclusive of both paraplegia and quadriplegia.

At the paraplegia workshop on November 4, 1966, I presented estimates of the total number of paraplegics ranging from 60,000 to 125,000. The workshop accepted 100,000 as a working figure. In congressional testimony, NINDB people have used 60,000 but they may have been referring to paraglegia of traumatic origin. While it would be interesting to know how many paraplegics there are as well as annual increments, it is only necessary to know how many paraplegics will use regional centers and we can only discover this through experience.

These people are mostly paraplegic (57-43 as opposed to quadriplegic), mostly male (78-22), mostly adult (60-40), and mostly civilian (90-10). There is reason to believe that among new cases, the proportion of quads is growing and may now be exceeding paras. This may be due to improved lifesaving methods enabling quads to survive the initial trauma.

At least 80 percent (total less veterans and workmen's compensation) have inadequate access to proper treatment because of a lack of financial resources and a lack of adequate facilities. As Mr. Barrie will testify, the costs of paraplegia are tremendous and certainly beyond the means of the vast majority of