I ended up, sort of leaning on a counter, trying to decide if it was going to stop, or if I should perhaps take some medication. Being in the store, I had to get home, I had my daughter with me, and there was no one else there to help.

Finally, we got home, and I had taken my medication. I applied some heat to the leg, put my daughter to bed, and sort of just sat there, still trying to decide what was going to happen.

I started to feel a little better, so I went to bed, and I decided if I felt better in the morning, I would go to work.

If not, perhaps I would stay home the next day, but during the night I woke up, and the pain had increased tremendously.

At the time I woke up, the medication I had taken had not worn off, so the pain did wake me up, it had sort of forced itself through the medication; that is sort of my cutoff point, as to whether I contact my doctor or not.

If I feel that the medication he has given me can control what is going on, so I can function, I do not contact him, but if it does not, then I call him.

This is what I did, and I was told to go into the emergency ward, at the hospital immediately.

I was still at home, so I had to try to contact somebody to come and take care of my daughter, and to drive me to the hospital. I was taken to the hospital, and they gave me some additional medication to try to relieve the pain.

I am not sure whether it relieved the pain, or just sort of put me in a position where I really did not care anymore.

They also started fluids.

Senator KENNEDY. You do not know what the drug was?

Mrs. WINSTON. It was a combination of three drugs. I cannot remember what they were, but codeine was one.

They started fluids intravenously, and they were giving me oxygen, as well as the drugs to relieve the pain. That was the extent of what was done.

They tried to determine whether or not I had an infection that could be cleared up to try to help halt the crisis.

Hematology studies were done, but the values that I had at that time were my normal values, so that my red count had not changed, my white count was slightly elevated, but not to any great extent.

I was hospitalized for a week and a half at that time, and, finally, after I sort of nagged everybody to the point where they could not take it anymore, they let me go home. I stayed at home for about a week, still taking some medication, and calling the doctor, perhaps every other day, sort of reporting in.

At the end of that time, about 22 weeks, I went back to work, and back to my usual duties.

Senator KENNEDY. Were you covered by insurance during this period of time?

Mrs. WINSTON. I am covered by Blue Cross/Blue Shield on the hospital group policy.

Senator KENNEDY. Did you have some medical expenses at that time?

Mrs. WINSTON. I think they were $1,100 or $1,200 for that particular crisis.

Senator KENNEDY. Between $1,100 and $1,200 for that particular crisis?

Mrs. WINSTON. For one crisis, yes.

Senator KENNEDY. Of which how much was paid by the Blue Cross/ Blue Shield?

Mrs. WINSTON. I am not sure. All of it was paid by somebody, not by me.

I am not sure exactly what Blue Cross/Blue Shield paid, and I am also on the university policy, because my husband is a student there, so I am covered from about three different policies.

Senator KENNEDY. You still have Blue Cross/Blue Shield?
Mrs. WINSTON. Yes, I do at this time.

I do not know what is going to happen if I ever leave the university, because before I started working there, I did not have Blue Cross/ Blue Shield for a period of about 22 years, because the policy was canceled.

Senator KENNEDY. Why was it canceled?

Mrs. WINSTON. I do not know. The excuse I was given was nonpayment of premiums, but the reason I was not paying the premium was because I was not sent the bill. I was told not to pay until I received the bill, and after about 4 or 5 months of this, they canceled the policy for not paying the premium.

Senator KENNEDY. Now, with regard to the programs at Rochester, who is funding those programs?

Mrs. WINSTON. Nobody.

Senator KENNEDY. It is voluntary?

Mrs. WINSTON. The entire staff with the exception of myself and one other person I can think of is volunteering.

Senator KENNEDY. Do you think if you got some resources from the Federal Government, just modest resources, you could really expand that program?

Mrs. WINSTON. I am sure.

Senator KENNEDY. Do you know of other screening programs that have taken place, not only in Rochester, but in some of the other communities around Rochester, any of the cities?

Mrs. WINSTON. Most of the ones around Rochester that I know of are those that have sprung up through the influence of our program. Senator KENNEDY. But are there a few?

Mrs. WINSTON. Yes.

Senator KENNEDY. OK. Well, that is very, very helpful.

I want to express our appreciation. It is never easy to talk about these matters, because they involve things that are personal, but you have given us an added dimension and insight into the problem, and I think it is enormously helpful and valuable to this subcommittee in considering the legislation. I want to thank you both very much. The subcommittee stands in recess until 9:30 tomorrow morning. (Whereupon, the hearing was recessed until 9:30 a.m., November 12, 1971.)

NATIONAL SICKLE CELL ANEMIA PREVENTION ACT

FRIDAY, NOVEMBER 12, 1971

U.S. SENATE,

SUBCOMMITTEE ON HEALTH OF THE

COMMITTEE ON LABOR AND PUBLIC WELFARE,

Washington, D.C.

The subcommittee met at 10 a.m. in room 4232, New Senate Office Building, Senator Edward M. Kennedy (chairman) presiding. Present: Senators Kennedy, Hughes, Javits, and Schweiker. Staff members present: LeRoy G. Goldman, professional staff member; and Jay B. Cutler, minority counsel.

Senator KENNEDY. The subcommittee will come to order.

This morning we begin the second day of hearings on the National Sickle Cell Anemia Prevention Act. I am grateful for the concern expressed by everyone who is working to produce a substantial commitment in this vital area of health need.

During yesterday's hearing, Mrs. Dorothy Boyd delivered a deeply moving account of her family's 26-year battle with sickle-cell anemia. Of the Boyd's four children, two have lived with sickle-cell anemia all their lives. For that family, sickle-cell anemia, the neglected crippler, has produced years of agony, doubt, pain, and wonder. The Boyds' have personally struggled with enormous medical costs and immeasurable anguish, for a disease that America has ignored for decades.

As we listened yesterday to the descriptions of agony that the crises of sickle-cell victims are destined to endure, only inadequate, unjustified excuses were offered by the Department of Health, Education, and Welfare, as a response to the need of those who are suffering.

These 2 days of hearings are conducted in order to fully examine the ways in which the Federal Government might join in the battle against sickle-cell anemia. The bill we are considering, S. 2676, authorizes $30 million each year, for 3 years, to begin to meet that disease.

The proposed legislation would establish $25 million a year for the development of programs to test, screen, counsel, and inform potential sickle-cell anemia victims of the problems the disease can produce. In addition, this bill, which has strong bipartisan support from 31 Members of the Senate, authorizes $5 million a year for each of 3 years, to support research that will lead to improved treatment procedures.

For the 2 million black Americans who are believed to bear the sickle-cell trait, and for the estimated 100,000 victims who suffer from

the debilitating effects of the disease, S. 2676 offers to produce a beginning in the struggle against this malady.

Officials from the Department of Health, Education, and Welfare told the committee yesterday that they are indeed aware of the requirements for an adequate sickle-cell anemia treatment center, even though the Department appears unable or unwilling to meet that need. Thus, neither adequate physical facilities, the development of substantial personnel training, nor the procurement of equipment is currently underway, according to HEW officials.

This lack of concern is dismaying. As I emphasized yesterday: Sickle-cell anemia has been a neglected disease for too many years. It is now receiving the concerted attention of many of us in the Congress and of health authorities around the Nation because of serious efforts to examine many of the ills and problems that have long affected those Americans who suffer the inhumanity of racism. Probably no other disease has affected as many people in this country as sickle-cell anemia and has been as unattended as this disease. Some 58,000 people suffered during the 1952 epidemic of polio. Despair and fear from that killer brought a shock to the Nation that generated an all-out effort to control it.

But sickle-cell anemia, which occurs much more frequently, has been neglected and ignored just like most other conditions that affect only black people.

I am convinced that if sickle-cell anemia struck the lives of white families with the same impact it strikes black families, we would have made a public commitment to end the disease long ago.

As chairman of the Health Subcommittee, I want to reemphasize that I will firmly support every effort to obtain relief and assistance for those who suffer with this disease.

We cannot move rapidly enough at this stage to begin with a serious effort to combat it. I am announcing, therefore, that on Tuesday. November 16, the Health Subcommittee will meet in executive session to try to take final action in preparing this bill, S. 2676, to be reported to the full Committee on Labor and Public Welfare.

I look forward to the testimony this morning from the very dedicated witnesses who are an important part of the growing assault on sickle-cell anemia. I want to say it is a very deep personal pleasure to welcome a panel of distinguished physicians and scientists: Drs. Roland Scott, Robert Rhodes, Anthony Cerami, and Maurice Rabb. These gentlemen will describe the clinical and technical aspects of sickle-cell anemia and the requirements needed to resolve the mysteries of this disease. Preceding the presentation from the panel of medical experts, we are delighted to have with us this morning another panel of gentlemen who are widely known to many Americans because of their outstanding successes in the world of sports.

They are here today, however, because they share with us the commitment to fight against sickle-cell anemia. Representing the Black Athletes' Foundation, we have with us: Horace Davis, executive director; John Henry Johnson, and Hank Aaron.

Before hearing from them we would like to extend a warm word of welcome to Congressman Bill Clay from St. Louis, and then later in the morning we are going to hear from Mr. Clarence Mitchell, as our final witness, who is the director of the Washington bureau of the NAACP.

Senator JAVITS. Mr. Chairman, I could not be here vesterday because of the various other problems we are facing here in the Senate, but I wish to associate myself with the remarks of the Chair.