REHABILITATION ACT OF 1972

TUESDAY, JUNE 6, 1972

U.S. SENATE,

SUBCOMMITTEE ON THE HANDICAPPED,

COMMITTEE ON LABOR AND PUBLIC WELFARE,

Washington, D.C. The subcommittee met, pursuant to notice, at 9:30 a.m. in room 4232, New Senate Office Building, Senator Alan Cranston presiding pro tempore.

Present: Senators Cranston and Stafford.

Committee staff members present: George E. Lawless, professional staff member; Robert R. Humphreys, special counsel; Jonathan R. Steinberg, counsel; and Roy H. Millenson, minority professional staff member.

Senator CRANSTON. The hearing will please come to order. This morning we conclude our hearings on H.R. 8395 and bills amending the Vocational Rehabilitation Act. With the assistance of our excellent and highly knowledgeable witnesses, I hope we have built an enlightening and extensive hearing record.

We will keep the hearing record open until June 19 for submission of additional views by our witnesses and written statements by those who were unable to appear personally. In addition, I am asking HEW to submit for the record any appropriate comments and reactions to each of the suggestions and recommendations made during our 5 days of hearings pertaining to possible legislation.

Finally, I want to thank my good friend, Senator Randolph, the distinguished chairman of this subcommittee, for giving me the opportunity to chair these hearings and to work on the pending legislation. I look forward now to reviewing all of the testimony and submissions from these hearings and to working closely with Senator Randolph, with Senator Williams, chairman of the full committee, with Senators Javits and Stafford, ranking minority members of the full committee and subcommittee, respectively, and with Senator Taft, who introduced the administration bill S. 3368, to work out the best possible legislative approaches to the pervasive problem of providing realistic, comprehensive and accessible rehabilitation services and programs to our Nation's handicapped persons.

Our first witness this morning is the Honorable Joseph Garrahy, Lieutenant Governor, State of Rhode Island.

I have a statement from Senator Pell, which he would have made had he been present. He asked me to read it in his absence:

I regret very much that my official duties as a Senate adviser to the United States delegation at the United Nations Conference on the Human Environment in Stockholm prevents me from participating in the hearing this morning.

I particularly regret not being with you because one of the witnesses is the very able Lieutenant Governor of my own state, the Honorable J. Joseph Garrahy.

In two terms as Lieutenant Governor he has distinguished himself by his superb handling of his duties as presiding officer of the Rhode Island Senate and the many other administrative duties of his office. Furthermore, he has been a champion of the important, progressive programs on a state level that are vital if we are to improve the quality of life for all our citzens.

Governor Garrahy appears before this subcommittee today to testify on a subject for which I know he has great personal concern. His personal interest in kidney disease stems from the experiences of family and friends. Governor Garrahy is a member of the Exectuive Committee of the New England Regional Kidney Program and he has been instrumental in establishing three kidney disease treatment centers in our state at the Rhode Island Hospital, the Miriam Hospital, and the Veterans Hospital.

Mr. Chairman, I am confident he will testify eloquently on the importance of improving and increasing our facilities for treating this very serious affliction. We are glad to have you with us today.

STATEMENT OF HON. JOSEPH GARRAHY, LIEUTENANT GOVERNOR, STATE OF RHODE ISLAND

Mr. GARRAHY. I am pleased to have the opportunity to appear before the Senate Committee on Labor and Public Welfare, Subcommittee on Handicapped, and present my views regarding the development of an adequate program to provide financial assistance to individuals suffering from chronic end-stage kidney disease. I am particularly grateful to Senator Claiborne Pell for the assistance he and his staff have offered me.

First, I would like to say that I am aware of the legislation which has already been introduced with respect to kidney disease and related disorders. I commend these efforts heartily.

I am sure you gentlemen are well aware of what constitutes endstage kidney disease and are knowledgeable about the two forms of treatment; kidney transplantation and chronic hemodialysis.

It is difficult to pinpoint the exact number of Americans ideally suited for one or the other type of kidney therapy. The National Kidney Foundation estimates that of the 55,000 to 60,000 end-stage kidney disease patients, approximately 25,000 could be successfully treated with one of these life saving procedures. Of these 60 percent or 15,000 could be trained for home dialysis and 40 percent or 10,000 could be maintained in an in-hospital or satellite center. Sophisticated methods of surgery now permit 10,000 new transplants per year according to National Kidney Foundation.

Within the four categories of treatment-transplants, home dialysis, satellite treatment, and in-hospital treatment, the costs vary dramatically, while with one possible exception, the quality of care remains constant.

The optimal form of therapy is transplantation. Its cost is approximately $8,000 to $20,000 per operation with some continuing expense after the first few months following surgery. Subsequent to surgery, $1,000 per year is needed for drugs and related items. The overall success rate of transplantation is 85 percent.

Many patients are not suitable for transplants and will require dialysis as a continuing form of treatment. Today, patients are generally dialyzed either in the hospital or in their home. Let us examine

both of these sites for a moment. Home dialysis permits the patient to function as a normal member of the community. It is also the most economical and personally efficient method available. The initial costs for home dialysis are high due to the need for an extensive 12-week training program ($9,000), the cost of the machine and necessary adjustments to the home, such as plumbing and carpentry ($4,000), and the ($6,000) cost of dialysis itself with a total start-up cost of $19,000. But in subsequent years, the cost drops to the $6,000 level. Thus, home dialysis is relatively inexpensive and personally most convenient. Those factors, coupled with the lack of sufficient outside facilities, have resulted in an overdependence on home care, most often at the patients' insistence. As a consequence many people are being dialyzed at home, when in fact, they should be under more intensive supervision. This has meant a decrease in the effectiveness of the treatment; in other words, many of those undergoing home treatment have not been responding to dialysis and have fallen victim to further deterioration and often even to death.

Hospital dialysis, on the other hand, offers intensive and thorough supervision. It is, of course, necessary in all cases in any stage of transplantation or with any complications. But its cost is in the neighborhood of $35,000 per year. Moreover the psychological adjustment of hospitalization is often a difficult one for the patient.

To combine the best features of in-home dialysis and hospital treatment a third procedure has been developed *** that is the satellite center. These units provide the same quality controlled treatment as that received in a hospital, but at approximately one-half the cost, or about $17,000 per year.

According to Dr. Ira Greifer, medical director of the National Kidney Foundation, a model satellite center should be capable of handling approximately 20 patients per shift, 3 days a week on three shifts of a 6-day week. Thus, functioning at full capacity a model satellite unit could maintain 120 patients per week. Patients are normally treated at night in order to permit them to remain as productive members of society.

At the present time, in-hospital dialysis is the most expensive form of therapy, and furthermore, has limited potential for expansion. Thus, supervised out-of-hospital dialysis treatment represents a situation where the cost of treatment can be significantly reduced while increasing the potential availability of the procedure. Placement of facilities must be carefully planned to meet the patient needs and to avoid unnecessary proliferation of services.

The heart of my proposal features the satellite center facility. The goals of these centers are to reduce the expense of hospital dialysis, promote an atmosphere more conducive to patient comfort, convenience, and privacy, and at the same time provide maximum patient safety and surveillance.

Chart B of the addendum delineates the projected costs under a program emphasizing satellite centers and one emphasizing the hospital facility. If we focus on satellite units, the savings to the taxpavers is $108 million.

To maintain quality control of medical services for patients who require dialysis therapy in out-of-hospital facilities, I believe it is necessary to promulgate certain regulations.