Senator CRANSTON. Our next witness is Dr. John S. Young, project director, Southwest Regional System for the Treatment of Spinal Cord Injury, of Phoenix, Ariz.

Thank you also for your presence, and thank you for coming across the country.

STATEMENT OF JOHN S. YOUNG, M.D., PROJECT DIRECTOR, SOUTHWEST REGIONAL SYSTEM FOR THE TREATMENT OF SPINAL CORD INJURY

Dr. YOUNG. First, Senator, I would like to thank the chairman and the committee for giving me the privilege of coming here today and speaking primarily on behalf of the spinal cord injured.

I am Dr. John S. Young from Phoenix, Ariz. I am the project director of the Southwest Regional System for the Treatment of Spinal Cord Injury. This system brings together the Barrow Neurological Institute of St. Joseph's Hospital, the Institute of Rehabilitation Medicine, Good Samaritan Hospital, and other institutions and agencies, including the Arizona Division of Vocational Rehabilitation and the Public Health Service, Division of Indian Health, in a system that provides a continuity of patient care throughout the region. The region includes all of Arizona and adjoining parts of surrounding States. We started the system in 1968, and in 1970 we received a major grant from Social and Rehabilitation Services to demonstrate a regional system for treatment of spinal cord injury.

In March of this year Congressman John Rhodes requested we review H.R. 8395, particularly section 413 pertaining to National Centers for Spinal Cord Injuries, and submit our opinions and recommendations. We reviewed the section, both in light of our experience and the experience of others, worldwide. We discussed the section with several authorities in the field of spinal cord injury throughout this country and other countries that have developed spinal cord injury centers. We have submitted the following observations and recommendations for amending the section to enable us to demonstrate effective systems of spinal cord injury care in this country.

In essence, Senator, the bill is broad enough to do a good job. However, we felt that there was a certain weakness in this broadness, in that it was not specific enough. Particularly it did not spell out the need for a continuity of care literally from the moment of accident or onset of the injury, and continuing throughout the remainder of that patient's lifetime.

We believe that the act as written has a major weakness in that it refers to vocational rehabilitation centers for spinal injury. This is inadequate. The whole program for the treatment of spinal injuries is directed at prevention. It is not limited to rehabilitation. We must prevent a whole series of consequences that are costly and devastating to the individual.

The good spinal system must literally be involved with the mechanisms of the accident itself. It must contribute to programs and legislation concerning better automobile packaging, better industrial safety measures, and this sort of thing.

It must be involved in better techniques for the transport of the patient to the treating hospital. Regrettably I can say we have seen

in the last 2 years five injured people who were able to walk and had very little neurological damage in the hours immediately following their injury. These five subsequently became totally paralyzed. This is the sort of thing we must prevent. The price tag to society is probably going to be about a million dollars for these five people.

So we must be involved in the emergency evacuation. We must be involved in the acute surgical or emergency type of treatment that is given within the first few days. We must be involved from the beginning in the rehabilitation process which continues throughout the long-term management of the patient.

We believe these things must be specifically spelled out in the legislation so that there will be no doubt what we mean by systems of spinal cord care.

We have strongly recommended that in addition to providing this broad spectrum of service, supplemental funding be made available for indigent patient care. When we started our program in Arizona we determined a need of about a quarter of a million dollars to do our staff development, our planning, our organization and, most importantly, to set up a system of data collection, systems analysis, to evaluate what we were doing and how much it cost.

Further, it seemed to us it would be immoral to set up a good system of care and provide it only to those people who could pay. We insisted that we have special funds to supplement the resources of all people, so that we could take care of everybody who came through the doors, providing them the type of care they needed.

In the first year $550,000 was given to us by Social Rehabilitation Services to be used as a supplementary indigent care fund. This has been increased to a little over $600,000 in the second year.

If I have anything of importance to say this morning, I would emphasize this need to provide for supplementary funds for indigent people. The need is so important that without these funds we cannot develop an organized system of care. In other words, we can open spinal cord centers, but unless we have centralized funding, we will not attract the broad referral base which would promptly bring into the system all the patients in the region.

In the past year we were successful in getting approximately 50 percent of all the spinal cord injuries in Arizona and parts of surrounding States within the first 24 hours of their injury.

We think that this year we should get close to 70 percent, and hopefully by next year exceed 90 percent. This is our goal, to get these people in early.

Going on, the system of care that is established must have a strong data collection system analysis.

If we are going to have demonstration centers, part of their demonstration must be to develop the date on how many spinal cord injured people there are. What is the etiology of spinal injury? How can we best prevent all of the complications? What are the costs involved in these complicated cases?

Finally, there is weakness in the legislation because it does not allocate specific funds for developing spinal cord injury centers. We do have knowledge of how much this is going to cost. If one looks at the world literature and some of the figures we now have available in this country, he can come up with a pretty good ballpark idea of what it

is going to cost, how many people we have, and what we should do for them.

We have advocated that we have initially $15 million to start from 12 to 15 centers, including the supplemental funds for indigent care; in the second year probably going to $25 million; and $30 million in the third year.

This money will be adequate to develop enough regional demonstrations to give us the information, particularly on professional effectiveness and cost effectiveness, to establish a network of national centers, knowing what they should do and how much they are going to cost. These are the recommendations we have submitted to the subcommittee. I will be happy to respond to questions pertaining to these recommendations or any other aspect of spinal injuries.

Senator CRANSTON. Thank you very much for that very useful statement. Your entire prepared text will appear in the record at the end of your testimony.

I recognize your outstanding reputation in this field, and we rely heavily upon your advice as we deal with this legislation.

In your prepared statement you refer to the fact that the scope of VR services, at least up to now, has been focused exclusively on vocational goals.

You say further that if we continue to adhere to that policy, the treatment of the spinal cord injured will be largely a salvage operation. I am aware of the specific amendments you have proposed on this point, but I would appreciate if you could expand on this to some degree for us.

Dr. YOUNG. Yes. If we approach this in a vocational vein, the horse would be out of the barn before actually the person gets to the vocational rehabilitation stage.

Specifically, our length of stay for a paraplegic was 112 days from injury to discharge to home, and 120 days for the quadriplegic. This is by and large adequately covered by the basic health and hospitalization insurance.

However, if the patient lies around in a general hospital this resource may be squandered. It can be literally wasted purchasing complications which add additional cost to the rehabilitation program. At the present average rate of $120, a day for hospitalization for 120 days the waste may amount to $14,400, for each case. Pathetically, this roughly corresponds to the total cost of proper care if it had been instituted from the onset. Further, in our experience and the experience of others, the length of stay in a spinal cord injury center is almost twice as long for a patient admitted 120 days from injury compared to that of a patient admitted within 30 days of injury. This amounts to $14,000. In other words, $14,000, is wasted by inappropriate treatment prior to a spinal cord injury center and as a result of the complications incurred, an additional $14,000, or more is added to patch up the complications before true rehabilitation may be started. Thus as a result of early inappropriate care $28,000, is wasted on each case.

Senator CRANSTON. Do you as a rehabilitation medicine expert know what is the cost of the rehabilitation of a single spinal cord injury victim from the onset of the injury through vocational training and rehabilitation to job placement?

Dr. YOUNG. In our experience over the past 2 years, which we have carefully documented-we ran $14,000 for the paraplegic and

$18,000 for the quadriplegic. This is from injury to home placement. You can add on to that the cost of his vocational and educational training and placement. This may vary from $500 to $5,000 per person. But it is peanuts compared to the initial and onging medical costs. Senator CRANSTON. Could you supply us with a breakdown of those costs, for the record.

Dr. YOUNG. Yes, I will. So far we have only talked about the costs of treating the initial injury. The major cost comes in the subsequent medical complications, the psychological deterioration, the social deterioration. The real hidden costs of spinal injury come after the first hospital stay.

If we could use the experience of the larger insurance companies that deal with these people, particularly in workmen's compensation where we do have a handle on how much the total costs are, the companies now are reserving anywhere from $150,000 to $200,000 for each paraplegic, and anywhere from $300,000 to $500,000 for the quadriplegic.

These are hard figures based on economics rather than "do-gooderism." They give us a good idea of the subsequent ongoing costs.

Senator CRANSTON. As in the case of end stage renal failure, RSA and the VR agencies seemed to feel that much of what is being requested is largely a medical function, and not one which directly affects the vocational rehabilitation of individuals.

It would appear from your testimony that you disagree. Could you explain why.

Dr. YOUNG. I violently disagree. The one thing that has given us poor spinal care in this country is this fragmentation-this segmentation of various phases: the medical, the surgical, vocational rehabilitation.

This must not be done. It has to be a continuity of care. Physicians in spinal injury are just as much interested in the vocational goals, the psychological problems, the social problems, as they are in the medical problems.

In fact everybody in the program has to cover all the bases. This is vital, sir, to the whole program.

Senator CRANSTON. You suggest that 12 to 15 regional demonstration systems would be sufficient. Do you mean by that a starting figure? What could adequately serve the total spinal cord injured in your opinion?

Dr. YOUNG. We have some ball park figures on that. I am a member of the International Medical Society of Paraplegia that brings together specialists in spinal injury from throughout the world. Last year in England we discussed the size of centers, and the number of people they can provide service for.

We are pretty much agreed the minimum size for a spinal injury center should be approximately 40 to 50 beds. It takes that many to develop staff expertise, to get enough patients together so that you recognize all the variations, and, most important, to provide the environment where these people stimulate each other, work together and learn from each other what it means to live with a spinal injury.

So 40 to 50 minimum size. There is a maximum size, probably 80 to 100 beds. Beyond that your ability to communicate and work as a team diminishes. The maximum size would be 100 patients, the minimum, 40.

Senator CRANSTON. How many such systems do you think we really need?

Dr. YOUNG. A 40- to 50-bed unit can supply services to a population of 2 million people. An 80- to 100-bed unit can serve anywhere from 4 million to perhaps 5 million people.

If we project these figures to the present population of 200 million ultimately we will need at least 60 centers, probably even as high as

70.

Senator CRANSTON. I would like to ask that you submit the following for the record-and we will give you the detailed question-but what we want from you, if you can give it to us, are some figures as to the cost of operating such a center for a year, what type of staffing mix, and total you would feel appropriate.

You went into how many beds per center, but would you give us the details in terms of money.

Dr. YOUNG. I would be happy to.

Senator CRANSTON. You, I know, are aware of the amount of expertise that the Veterans' Administration has developed over the years in the field of the rehabilitation of the cord injured veteran.

Is there adequate coordination and communication now between the VA and non-VA efforts for the spinal cord injured?

Dr. YOUNG. There is not adequate coordination and communication. We would all like to see it be better. I would like to say there has been, particularly in the last 2 years, a lot more communications going on. We had a joint meeting of the Veterans' Administration, Spinal Cord Injury Service and the International Medical Society of Paraplegia in Boston last year. There is a lot more communication going on, even to the point where we envision as we develop national civilian centers we can incorporate into these the care of the veterans within the region.

This would be highly desirable. Obviously it will take many hours of compromising and discussion to achieve this, but it is a logical goal. Senator CRANSTON. What has caused the improvement that you have seen?

Dr. YOUNG. I think primarily it has been the increasing awareness, particularly in the medical profession, of the need for specialists in spinal injury.

We are developing specialists not in rehabilitation but in spinal injury. The VA of course has developed this type of person.

Unfortunately the generation of good men were developed right after World War II and are retiring, or reaching retirement age. They must be replaced with a new generation of spinal cord injury experts. They must be trained.

Senator CRANSTON. What is your appraisal of the coordination between HEW and VA at the Federal level?

Dr. YOUNG. I really do not think I am qualified to say.

Senator CRANSTON. How do you feel we can best provide for an informational and perhaps a consultation exchange between these two systems, VA and HEW?

Dr. YOUNG. Head knocking does not hurt. But beyond that it is mandatory that all agencies and governmental departments involved in the segments of the spinal injury program must communicate and get together.