AMERICAN NURSES' ASSOCIATION

Statement on

The National Sickle Cell Anemia Prevention Act

to

Senate Committee on Labor and Public Welfare

Subcommittee on Health

The American Nurses' Association is the professional organization of registered nurses in the United States. Its purposes are to foster high standards of nursing practice, promote the professional and educational advancement of nurses, and promote the welfare of nurses to the end that all people may have better nursing care. These purposes shall be unrestricted by considerations of nationality, race, creed, color or sex. We would like to direct our remarks toward the support of programs for the prevention, diagnosis and treatment of sickle cell anemia.

One of the major reasons for the existence of the American Nurses' Association is the promotion of optimum health care for all people. A large portion of our people, particularly Black people, cannot achieve optimum health because of sickle cell anemia. It is estimated that 600,000 Black Americans have sickle cell anemia and approximately 2.5 million Black Americans have sickle cell trait. Although the sickle shaped red blood cell was first identified and reported in 1910, there has been little interest in this health problem until very recently. Advances in science and technology must be directed toward the prevention, diagnosis and treatment of this condition in order to reach our goal of optimum health for all people.

The American Nurses' Association stands for health care as a right unrestricted by considerations of nationality, race, creed, sex, age or socio-economic status.

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Health care in this nation is not universally available. Our poor and our minorities do not even have access to the less than adequate health care available to the more affluent.

Black people comprise a disproportionately large segment of the lowest income level in this society. Nurses, particularly public health nurses, have been aware of the marked effect of sickle cell anemia and sickle cell trait on the individual's ability to cope with the normal stresses of living. To cite a vivid example, the common cold, a frequent health problem to children living in substandard housing, can be the terminal event for the child with sickle cell anemia. Certainly sickle cell anemia is only one of the many, many problems of Black Americans. this could be one of the problems solved somewhat more easily if funds are made available. It is a responsibility of government to provide these funds.

Yet,

Sickle cell anemia is one of the disorders of the blood routinely discussed in schools of nursing. The pathology as discussed in a classroom is often not very impressive until the student cares for the child of 3 who limps and has difficulty walking because of a blood clot to the brain developed during a crisis, or the 8 year old hospitalized three and four times during the school year because of the painful crises, and the 20 year old undergoing skin grafts in an attempt to heal large leg ulcers. Only at this time is the individual tragedy of the illness

recognized.

Being "left back" in school, being fired from a job, being unable to support a . family, being unable to "mother" children, dying at age 20 are problems quickly identified by students as agonizing and critical issues for the individual, family and society. The cost of chronic illness to individuals, families and communities, financially and emotionally, cannot be estimated. The cost is more than monetary,

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the cost is the loss of the individual's potential contribution to the society.

The student, particularly the Black nursing student, asks why more hasn't been accomplished in the treatment of this illness when science and technology have made it possible to transplant kidneys, place artificial valves in hearts, and cure some

cancers. What is the answer?

In the past decade, health care professionals and the American public have witnessed dramatic breakthroughs in medical care. The fact that the individual who has a coronary has a greater chance of survival today than ten or fifteen years ago is due to the efforts of the health care team. This same health team effort is needed

for the fight against sickle cell anemia.

Nurses are

Prevention and early recognition of illness is a primary health care role of nurses and other community health care workers. Identification of the research and health care needs to combat this multifaceted illness, sickle cell anemia, requires the collaborative efforts of all providers of health care services. vital links between medical therapy and patient services. The nurse has traditionally been the facilitator for individual and family entrance into the health care system and nurses are currently expanding this role to become the patients advocates.

The American Nurses' Association has since its origin 75 years ago recognized and worked for health as a national priority. The prevention, diagnosis and treatment of Sickle Cell Anemia is another step in achieving this goal.

JK:md 11/18/71

B FHA 117 GV PDF 5 EXTRA TDFH LARCHMONT NY 14 QOE PP EST
SEN EDWARD KENNEDY ATTN DR PHIL CAPER HEALTH SUB-COMMITTEE
NEW SENATE OFFICE BLDG RM 4226 WASHDC

IN CONVERSATION WITH DR PHIL CAPER AFTER THE CONCLUSION OF
THE HARING ON SICKLE CELL ANEMIA FRIDAY NOVEMBER 11 1971,
IT BECAME APPARENT THAT SPECIFIC INFORMATION ABOUT THE COST
OF A TYPICAL RESEARCH PROJECT SUCH AS OUR OWN MIGHT BE USE ING
IN JUDGING THE ADEQUACY OF THE PROPOSED FIVE MILLION DOLLAR
ANNUAL ALLOCATION FOR RESEARCH. IT IS REQUESTED THAT THE FOLLOWING
STATEMENT BE ADDED TO THE RECORD AS CONTINUATION OF THE TESTIMONY
BY DR ANTHONY CERAMI ENTITLED THE USE OF CYANATE AS A POSSIBLE
THE REAPY FOR SICKLE CISE ASE. STATEMENT BEGINS. WE HAVE
EEN STUDYING THIS POTENTIAL THERAPY FOR SICKLE CELL ANEMIA
FOR ONE YEAR. THE RESEARCH TEAM COMPRISES FOUR CHEMISTS, TWO
PHYSICIANS, ONE NURSE, FOUR TECHNICIANS AND ONE SECRETARY WHOSE
SALARIES TOTAL $39,000 ANNUALLY. SUPPLIES EQUIPMENT AND OTHER
LABORATORY EXPENSES ARE ESTIMATED AT 50 THOUSAND FOR THIS YEAR
THE COST FOR THE INITIAL CLINICAL STUDY OF 15 PATIENTS FOR
IN-PATIENT AND OUT-PATIENT CARE, THE CLINICAL LABORATORY, AND
THE PHARMACY WAS $250 THO US AND FOR THIS YEAR, AND THIS SUM WILL
DOUBLE OR TRIPLE AS THE INVESTIGATION EXPANDS IN THE NEXT TWELVE
MONTHS. PRESENTLY THE CLINICAL WORK IS FUNDED PARTLY BY THE

MARCH OF DIMES, AND PARTLY BY A CLINICAL

RESEARCH CENTER GRANT FROM NIH THE CHEMISTRY IS FUNDED PARTLY
BY A CONTRACT FROM N H L I AND PARTLY BY THE ROCKEFELLER UNIVERSITY,
THE NSF AND THE MERCK FOUNDATION. THE ESTIMATED EXPENDITURE
OF $49,000 SO FAR THIS YEAR HAS BROUGHT THE INVESTIGATION

OF ONE POSSIBLE THE RAPY FOR THIS DISE ASE THROUGH INITIAL LABORATORY
WORK, THE BARE ESSENTIALS OF ANIMAL TOXICITY STUDIES AND EARLY

8F-1201 (PSN

WU

western union

Telegram

TRIALS IN A FEW PATIENTS, AS WITH ANY NEW THERAPY AT THIS STAGE OF DEVELOPMENT THERE IS NO ASSURANCE OF SUCCESS, BUT THE RESULT AT PRESENT IN OUR STUDIES SUGGEST CAUTIOUS OPTIMISM. THE COST TO A PHARMACEUTICAL COMPANY FOR DEVELOPING ANY NEW MEDICATION IS CURRENTLY ESTIMATED AT 3-8 MILLION, AND FURTHER WORK ON THIS THE RAPEUTIC AGENT IN OUR LABORATORIES AND HOSPITALS WILL COST 1 AND 1/2 TO 2 AND 1/2 MILLION EVEN BEFORE LARGE SCALE CLINICAL TRIALS CAN POSSIBLY BE CONSIDERED. A BROAD, MULTI-HOSPITAL CLINICAL TRIAL MAY COST 5 TO 10 MILLION, FOR EXAMPLE THE NEW STUDY OF ARTERIOSCLEROSIS IN NEW YORK CITY. BEFORE THIS POSSIBLE THE RAPY FOR SICKLE CELL ANEMIA COULD EVER REACH THE PRACTICING DOCTOR AND THE DRUGGISTS SHELF A TOTAL OF 9 1/2 TO 20 1/2 MILLION MAY NEED TO BE SPENT OVER A PERIOD OF SF-1201 FREE YEARS. THE MAJOR POINT TO EMPHASIZE IS THAT THESE FIGURES REPRESENT AN INVESTMENT IN ONLY ONE POSSIBLE MODE OF THE RAPY, AND THAT CERTAINLY OTHER INVESTIGATIONS AT THE OTHER INSTITUTIONS CURRENTLY STUDYING SICKLE

SF-1201

CELL DISEASE SHOULD CONTINUE UNTIL A SUCCESSFUL TREATMENT HAS
EEN DEVISED. IN LIGHT OF THESE FIGURES, A TOTAL COMMITMENT
OF FIVE MILLION ANNUALLY FOR RESEARCH IN SICKLE CELL DISEASE
WOULD SEEM TO BE CONSIDERABLY LESS THAN ADEQUATE. THE FUNDING
OF ONLY THREE RESEARCH EFFORTS SUCH AS OURS WOULD REQUIRE TEN
TO TWENTY MILLION DOLLARS ANNUALLY, AND THERE ARE MANY INSTITUTIONS
IN THE COUNTRY READY AND CAPABLE OF PRODUCTIVE STUDY OF THIS
ILLNESS. END OF STATEMENT. IT IS HOPED THAT THESE FIGURES
MIGHT BE OF USE FOR PASSAGE OF THE BILL, AND IF FURTHER INFORMATION
OR ELABORATION WOULD BE HELPFUL, PLEASE CONTACT ME OR MY COLLEAGUES
THE ROCKEFELLER UNIVERSITY, 212-360-1000. YOURS TRULY
ANTHONY CE RAMI PETER GILLETTE AND JAMES MANNING.