Page (3) cont'd. ---Statement of E. A. Anderson, M. D.
Senate Hearing Sickle Cell Anemia

We have initiated and carried out these limited

programs without any significant help from the major tax, government, and health funding resources such as, HEW and/or U.. Public Health Services. However, the identifiable needs, the 'scientifics and social expertise is available in this nation. If you will enact this legislation, we feel it will be an important step forward.

STATEMENT OF HORACE DAVIS, EXECUTIVE DIRECTOR, BLACK ATHLETES FOUNDATION; ACCOMPANIED BY JOHN HENRY JOHNSON, HENRY AARON, AND DR. ANTHONY J. GIORGIO

Mr. DAVIS. Mr. Chairman, all of us wish to offer our sincere thanks for giving the opportunity to address you on a subject of such great importance to millions of black Americans.

So that there will be time for you to ask whatever questions you may have of us, I will touch upon only a few aspects of this major health problem and the legislation concerning sickle cell anemia that is now before you. I would like to ask, at the same time, that our full statement be entered into the official record of this hearing.

Little more than 2 weeks ago, on October 27, our foundation presented testimony before the Subcommittee on Public Health of the Senate Committee on the District of Columbia, which was considering legislation which would establish in the city of Washington, D.C., a pilot program on sickle cell anemia. Because much of that testimony also is relevant to the bill now before this subcommittee, let me just outline the major points we then stressed.

Because statistics on the incidence of this or any other disease attain meaning and significance only to those who understand what it does in the individual case, it is important to recognize that sickle cell anemia not only involves premature death, but also untold suffering for the patient and his or her family. We described a case which followed a typical course-18 hospitalizations by age 24 and death soon after.

A total program, involving a variety of public and private agencies, is the only kind that can lick this disease. It must be both adequately funded and properly coordinated.

Washington, D.C., the only city in the country in which a majority of residents are black, is a most appropriate site for an initial federally funded pilot program dealing with sickle cell anemia.

Testing and screening on a massive scale can, we strongly believe, drastically reduce the incidence of sickle cell anemia, although all aspects of the program must and should depend upon the voluntary cooperation of the affected communities and individuals.

Clearly, there is a growing recognition in Congress of the need for action in meeting the serious problem of sickle cell anemia. In testifying today in strong support of the National Sickle Cell Anemia Prevention Act, we wish to commend those Senators and Congressmen who are sponsoring this measure and the companion bill that would establish a demonstration program here in the Nation's Capital. We urge prompt and positive action on both proposals.

It is estimated that today 50,000 Americans are dying of sickle cell anemia―a fatal disease which kills a majority of its victims before they reach 21 years of age. It is a disease that involves terrible pain and suffering. Because it is hereditary—that is, passed on in the genes of the parents to a child-it can mean tremendous feelings of guilt for the parents of its victims, who often learn of the risks involved in having children only when the disease shows up in one of their own. For the afflicted family, too, the financial burden of sickle cell anemia is staggering.

More than 2 million black Americans-one in every 10-carry the sickle cell trait. Most are symptom-free and their greatest risk lies in marrying another trait carrier and having children who have the disease. The chance is very high-25 percent in every case that a child of two trait carriers will have sickle cell anemia. Trait carriers, too, however, may themselves experience "sickle cell crises" in certain situations where the normal supply of oxygen is reduced such as at high altitudes or under general anesthesia. And a few, under normal conditions, may show symptoms which, while far milder than those associated with anemia itself, can be troublesome.

Doc Ellis, who is unable to be here today because he is among a group of athletes currently making a tour of Vietnam, is a trait carrier and has health problems associated with that fact which he described in his recent appearance before the Public Health Subcommittee of the Senate Committee on the District of Columbia. And Willie Stargell-we had hoped he could be here today but he is in the hospital could outline for you some of the experiences of his 9-yearold daughter Wendy, who also is a carrier of the sickle cell trait.

But it is the disease itself, one must remember, that is the killer. The problems of the trait carrier are mild in comparison to the agonizing pain and the terror that the sickle cell anemia victim endures. Consider then that this disease strikes an estimated one in every 200, or even one in every 500, black persons born in this country, and you begin to appreciate the magnitude of the sickle cell anemia problem in the United States.

Because the disease is inherited, its spread can be halted, and the tragedy is that we are only now beginning to launch an attack of significant scope against it. There certainly can be no justification for any further delay. In urging the quickest possible affirmative action. on the legislation that is before you today, we pledge ourselves, too, to providing all the possible help that we can give in seeing that this fight is won.

This is a "must game," so to speak-a contest calling for the all-out effort of all who are interested in seeing victory achieved.

The roles that we believe our foundation can play in this struggle, on both national and local levels, are fundraising, education, and program coordination. Among the athletes who have agreed to help in the Black Athletes Foundation's plan to open offices and to become involved in testing and screening programs in every major sports city in the United States are Roy Campanella in New York City; Ernie Banks in Chicago: Bob Gibson in St. Louis: Willie Davis in Los Angeles; Jim Wynn in Houston; Walter Johnson in Cleveland; Hank Aaron in Atlanta. There will be many more to follow.

Although our foundation is quite new, having been incorporated in late May of this year, already we have been involved in the coordination of a pilot program in Allegheny County-that is, the Pittsburgh, Pa., metropolitan area-where our major office is located. And our experience there leads us to certain conclusions which, we believe, are relevant to a national sickle cell prevention program.

The Black Athletes Foundation offers the following four recommendations:

(1) The bill now before you appropriately places great emphasis on the screening and testing aspect of a prevention program. Because

electrophoresis is clearly the best method for carrying out sickle cell testing on the massive scale contemplated by the bill, it is our strong belief that the legislation should specify that this method of testing be used. Unlike the sickle-dex test and the sickle-prep test, which cannot accurately distinguish between the trait carrier and the anemia victim, the electrophoretic test can make such a determination. Additionally, it can pick up other abnormalities of the hemoglobin, such as hemoglobin C.

Although a rather expensive laboratory procedure when isolated samples are involved, its cost is as inexpensive as any of the other sickle cell tests when large numbers of samples are to be run. In such cases, the total cost of the electrophoretic test, including collection of the blood and salaries paid to the technicians involved, approximates 50 cents per sample. The sickle-dex test, in contrast, costs about $1.25 to $1.50 per sample, whether small or large numbers of samples are to be tested. Factors of both cost and effectiveness, therefore, dictate the electrophoretic method in large-scale testing programs for sickle cell anemia.

(2) An important part of an effective attack on sickle cell anemia must be a strong followup plan not only for counseling trait carriers, but also for advising and treating those persons who have the disease. In the coordinated program in which we are involved in Pittsburgh, the Allegheny County Health Department, the federally funded Homewood-Brushton Health Center, the Central Blood Bank of Pittsburgh, the Bidwell Cultural and Training Center, the local Pittsburgh Sickle Cell Society, Planned Parenthood, and the University of Pittsburgh are all making one effort for us to test and screen a quarter of a million blacks in Allegheny County.

Field interviews conducted by skilled personnel with trait carriers and anemia victims alike are essential to the program's success. The identification of trait carriers provides such persons with the information that allows them, for the first time, to make crucial choices-in the selection of a marriage partner or in adopting children as an alternative to having their own. These choices clearly must be voluntary, as is, in fact, the decision to be tested in the first place. Yet, it is important that trait carriers be given the facts, impartially and without causing unnecessary alarm, about the risks they may face. While the very personal decisions about their families are their own to make, skilled counseling is crucial to stemming the disease in an atmosphere free from undue anxiety.

Nor can the sickle-cell anemia victims be forgotten, however. As I mentioned earlier, there are probably about 50,000 such victims in the United States today. While there is currently no cure for the disease, its victims must be provided with the best possible treatment which may ease their suffering and prolong their lives. Many such patients will be from families whose levels of income are insufficient to meet the brutal financial demands that adequate care calls for.

Strong followup programs under the National Sickle-Cell Anemia Prevention Act must be designed to meet both the problems of the trait carriers and the victims of the disease.

(3) It is our best estimate that the costs of properly doing the needed testing, screening, and followup work in Allegheny County which has a black population of about one-quarter million, will run to

about $1.9 million. Now, this is a program strictly for screening and testing. It is not for purchase of equipment. It is screening and testing and followup and counseling.

Senator KENNEDY. Do you think you could put that money to good use now? You have the personnel that are prepared to go ahead with the program? You have the equipment necessary? Do you think that money would be utilized effectively toward the goal that you would desire?

Mr. DAVIS. Right. We made a final step in that Tuesday when we purchased $10,000 worth of electrophoresis equipment. If we had the money, we could move tomorrow on the program.

Senator KENNEDY. This is just in that county, Allegheny County; is that right?

Mr. DAVIS. Right. The reason we are confining it to Allegheny County, we felt that we would have a complete program there before we move into any other city. We encountered a lot of problems in Pittsburgh, so by ironing out our problems in Pittsburgh, we would not encounter the same problems in Atlanta or Chicago, for instance. Senator KENNEDY. You are hopeful that based on the success in Allegheny County, with the kind of approach developed there, you could apply that system to other communities. As I understand, you are trying to put that kind of a high-powered program in operation across the country. Rather than referring to these programs as "pilot" projects because that denotes the need for a good deal more study and research to determine what to do, we know from testimony earlier this morning, the directions needed to launch an attack on sickle-cell anemia. What you are saying here is you have got the people and the personnel you need, and all you need now is the go-ahead; and the go-ahead in this case happens to be resources. Do I understand you correctly?

Mr. DAVIS. Right. We realize that sickle cell anemia is too large a problem for one organization to assume the responsibilities in any metropolitan city taking on this themselves.

As a general estimate, we feel that the cost of such a program will be between $1.5 and $2 million for every 250,000 blacks in the population. On that basis, we estimated, in our testimony on the bill calling for a demonstration program in Washington, D.C., that the program's cost would run between $3,444,000 and $4,592,000. Yet, while Washington, D.C., is the city which has the highest proportion of blacks in its population of any city in the country, there are five American cities that have larger black populations than Washington's 574,000. They are New York City, with 1,500,000 black residents; Chicago, with 1,150,000; Detroit, with 800,000; and Los Angeles and Philadelphia, with about 700,000 each.

Clearly, these five cities are natural locations for the establishment of sickle cell centers described in section 1102 of title XI, under the proposed bill. It is our belief, however, that the $5 million in each of the next 3 fiscal years, which the bill calls for in demonstration grants, is insufficient to properly do the job.

If our estimates on a Washington program are correct, the establishment of centers for these five additional cities alone will cost a great deal more. Yet, hopefully, demonstration grants also will be