ORIGINAL

S/R-NOS

ADDRESS
By
C. Everett Koop, M.D., Sc.D.
SURGEON GENERAL
OF THE
U.S. PuBLic HEALTH SERVICE
U.S. DEPARTMENT OF HEALTH AND HuMAN SERVICES —

us

PRESENTED AT THE FESTSCHRIFT To Honor Dr, PHILip L. CALCAGNO
WASHINGTON, D.C.
June 10, 1988
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(GREETINGS TO HOSTS, GUESTS, FRIENDS, ETC.)

IT'S A GREAT PLEASURE FOR ME TO BE HERE, PARTICIPATING IN
THIS FESTSCHRIFT FOR DR. CALCAGNO, I WON'T REPEAT ALL THE GOOD
THINGS I KNOW WERE SAID ABOUT HIM THIS MORNING, BUT I CERTAINLY
WANT TO SECOND THEM,

ANYONE WHO HAS BEEN A DEPARTMENT CHAIRMAN FOR 25 YEARS --
AND CAN STILL FILL A ROOM WITH CLOSE AND ADORING FRIENDS -- HAS
GOT TO BE A REMARKABLE PERSON.
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AND OF COURSE HE IS. SO I AM DELIGHTED TO COME BY AND JOIN

SO MANY OTHER COLLEAGUES IN HONORING A FIRST-RATE PEDIATRICIAN,
NEPHROLOGIST, ADMINISTRATOR ... AND HUMAN BEING.

MY ASSIGNMENT AT THIS FESTSCHRIFT IS NOT GOING TO BE VERY
FESTIVE, I’M AFRAID. DR. MAGRAB AND DR. COLON ASKED ME TO
PROVIDE AN UPDATE OF SORTS ON THE TOPIC OF PEDIATRIC AIDS. IT'S
A GRIM BUSINESS ... AND IT’S GETTING WORSE.

SINCE THE EARLY DAYS OF THE EPIDEMIC RIGHT UP TO THIS PAST
MONDAY, WE‘VE HAD A TOTAL OF 1,013 CASES OF AIDS AMONG CHILDREN
UNDER THE AGE OF 13, THAT’S LESS THAN 2 PERCENT OF THE OVERALL
TOTAL.
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IN A SOCIETY FASCINATED BY HUGE NUMBERS, 2 PERCENT ISN‘T

VERY MUCH, BUT EACH CHILD WITH AIDS CONFRONTS OUR SOCIETY WITH A
SPECIAL MEDICAL AND SOCIAL CHALLENGE, ONE -- I HASTEN TO ADD --
THAT WE ARE STILL GENERALLY UNPREPARED TO MEET.

OF THAT TOTAL NUMBER OF CHILDREN THUS FAR REPORTED AS HAVING
AIDS -- 1,013 -- 60 PERCENT HAVE ALREADY DIED.

THAT MORTALITY RATE ITSELF, HOWEVER, IS SUBJECT TO CHANGE
AND, I’M SORRY TO SAY, NOT FOR THE BETTER.
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IF THE MORTALITY AMONG CHILDREN WITH AIDS PARALLELS THAT OF

INFECTED ADULTS, THEN IT WILL RISE TO BETTER THAN 90 PERCENT,
WHICH IS THE MORTALITY RATE FOR ADULTS WHO WERE DIAGNOSED AND
REPORTED AS HAVING AIDS AS EARLY AS 1981 AND 1982,

WE ESTIMATE THAT BY 1991 THE CUMULATIVE TOTAL OF CHILDREN
WITH AIDS SYMPTOMOLOGY WILL RISE TO 3,000. HOWEVER, THE NUMBER
OF HIV-POSITIVE CHILDREN MAY BE AS HIGH AS 10,000 BY THEN,

OF THE CURRENT TOTAL, THE LARGEST NUMBER BY FAR -~ 779
CHILDREN -- ARE THOSE WHOSE MOTHERS HAVE OR HAVE HAD AIDS OR ARE
AT RISK OF HAVING AIDS. THESE CHILDREN ACQUIRED THE VIRUS EITHER
IN UTERO OR DURING LABOR OR DELIVERY.
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WE CAN’T SAY THAT AN INFECTED MOTHER WILL ALWAYS TRANSMIT

THE VIRUS TO HER CHILD. HOWEVER, THE ODDS ARE RUNNING AS HIGH AS
50-50,

BUT THERE ARE STILL A GREAT MANY UNKNOWNS IN THIS AREA. FOR
EXAMPLE, WE DON’T REALLY KNOW THE ROLE OF THE PLACENTA AS A
VECTOR OR AS AN INHIBITOR.

WE'RE ALSO NOT CLEAR AS TO THE NUMBERS OF CASES IN WHICH
TRANSMISSION FROM MOTHER TO CHILD WAS TRANSPLACENTAL, AS OPPOSED
TO PERINATAL OR EVEN POSTNATAL TRANSMISSION.
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IN ADDITION, WE’RE STARTING OUR RESEARCH INTO PEDIATRIC AIDS

FROM A DATA BASE THAT REFLECTS THE ACTIVITY OF THE H.I.V. IN
ADULTS. “BUT WE’RE FINDING OUT THAT, IN AIDS AS IN SO MANY OTHER
AREAS, CHILDREN ARE NOT “LITTLE ADULTS.”

THERE ARE A VARIETY OF MEDICAL DIFFERENCES IN THE WAY THE
DISEASE IS MANIFESTED IN CHILDREN. FOR EXAMPLE, LYMPHOCYTIC
INTERSTITIAL PNEUMONIA -- OR L.I.P. -- IS A CHARACTERISTIC OF
CHILDREN WITH H.I.V., ALTHOUGH IT’S RARELY SEEN IN ADULTS.

ON THE OTHER HAND, KAPOSI’S SARCOMA IS COMMON AMONG
HOMOSEXUAL MEN WITH AIDS, BUT IS AN INFREQUENT MANIFESTATION
AMONG CHILDREN,
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ALSO, RECURRENT BACTERIAL INFECTIONS ARE MORE PROMINENT

AMONG CHILDREN THAN AMONG ADULTS WITH AIDS. MANY CHILDREN ALSO
EXHIBIT A CHARACTERISTIC ENCEPHALOPATHY LEADING TO DEVELOPMENTAL
DELAYS OR EVEN THE LOSS OF DEVELOPMENTAL MILESTONES.

WE ARE NOTING THESE AND OTHER DIFFERENCES, BUT WE AS YET
HAVE NO EXPLANATION FOR THEM. FOR THESE AND OTHER REASONS, YOU
MIGHT SAY WE ARE JUST AT THE “STARTING-GATE,” WHEN IT COMES TO
RESEARCH FOR THE DIAGNOSIS AND TREATMENT OF CHILDREN WITH AIDS.
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BUT SO FAR I‘VE JUST TOUCHED UPON SOME AREAS OF BIOMEDICAL

INTEREST. HOWEVER, THAT’S A VERY NARROW FRAME OF REFERENCE
BECAUSE CHILDREN WITH AIDS PRESENT A RANGE OF SPECIAL PROBLEMS
NOT ONLY TO THE BIOMEDICAL COMMUNITY BUT TO THE COMMUNITY AT

LARGE.

FOR EXAMPLE ...
* THEY ARE TOTALLY DEPENDENT ON OTHERS FOR HELP.

* THEY TEND TO BE EITHER FROM FAMILIES WHICH ARE
THEMSELVES UNDER STRESS OF POVERTY OR DISEASE OR THEY
ARE THE CHILDREN OF SINGLE WOMEN WHO CANNOT PROVIDE
THEIR CHILDREN WITH ANY HOME OR FAMILY SUPPORT.
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* CHILDREN WITH AIDS ARE UNFAIRLY BURDENED BY STIGMA,

HENCE, ALTHOUGH THEY MAY BE ASYMPTOMATIC FOR MANY
YEARS, THE STIGMA OF SEROPOSITIVITY CLOUDS THEIR SOCIAL
DEVELOPMENT AT EVERY STEP OF THE WAY,

LAST YEAR, I CONVENED A “SURGEON GENERAL'S WORKSHOP ON
PEDIATRIC AIDS” IN ORDER TO ARRIVE AT SOME BASELINE AGREEMENTS
AMONG MEDICAL AND SOCIAL SERVICE PROFESSIONALS AS TO WHERE WE
WERE IN OUR UNDERSTANDING OF THE PROBLEM AND WHERE WE OUGHT TO BE
IN THE YEARS AHEAD.
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IT WAS A VERY FRUITFUL MEETING AND LED TO A NUMBER OF

USEFUL DEVELOPMENTS. THE MOST SIGNIFICANT WAS THE ESTABLISHMENT
BY THE SECRETARY OF HEALTH AND HUMAN SERVICES, DR. OTIS R. BOWEN,
OF A SPECIAL DEPARTMENT-WIDE INITIATIVE ON PEDIATRIC H,I.V,
DISEASE.

THE DIRECTOR OF THE WORK-GROUP UNDER THIS INITIATIVE IS DR,
ANTONIA NOVELLO. AS MOST OF YOU KNOW, DR. NOVELLO IS ALSO THE
DEPUTY DIRECTOR OF THE NATIONAL INSTITUTE OF CHILD HEALTH AND
HUMAN DEVELOPMENT. MY ROLE IS AS THE SENIOR SCIENTIFIC ADVISOR
TO THE WORK-GROUP.
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SO FAR, WE‘VE LAID OUT A RESEARCH AGENDA IN THE AREA OF

PEDIATRIC AIDS. THIS IS, OF COURSE, WITHIN THE CONTEXT OF THE
OVERALL RESEARCH EFFORT IN AIDS.

WE HAVEN’T YET ASSIGNED PRIORITIES IN PEDIATRIC AIDS
RESEARCH, BUT WE MAY BE ABLE TO DO THAT IN OUR FIRST REPORT TO
THE SECRETARY, WHICH IS DUE IN AUGUST,

THIS RESEARCH AGENDA INCLUDES NOT ONLY THE EXPECTED ITEMS,
SUCH AS CO-FACTORS, VIROLOGY, AND THERAPEUTICS, BUT IT ALSO
INCLUDES RESEARCH THAT MIGHT HELP US MORE EFFECTIVELY INTEGRATE
BIOMEDICAL AND BIOBEHAVIORAL RESEARCH WITH A VARIETY OF RESEARCH
AND DEMONSTRATION EFFORTS IN FAMILY SERVICES, LEGAL AID, HUMAN
SEXUALITY, ETHICS, AND FUNDING,
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THE FUNDING QUESTION IS IMPORTANT, BECAUSE -- AS NEAR AS WE

CAN FIGURE IT TODAY -- ONLY ABOUT 4 PERCENT OF THE OVERALL H.H.S.
BUDGET FOR AIDS IS DEVOTED TO RESEARCH PECULIAR TO PEDIATRIC —
AIDS. YET, THE COST OF DIAGNOSIS, TREATMENT, AND PLACEMENT OF
INFECTED INFANTS AND CHILDREN IS RISING SIGNIFICANTLY.

SHOULD THAT 4-PERCENT FIGURE BE HIGHER? I THINK EVERYONE
WOULD AGREE THAT IT SHOULD. HOWEVER, THE AVAILABILITY OF MORE
MONEY WILL NOT -- BY ITSELF -- ANSWER THOSE QUESTIONS OF ETHICS,
LAW, AND MEDICINE THAT NOW CIRCUMSCRIBE PEDIATRIC RESEARCH IN
GENERAL, NOT JUST RELATIVE TO THIS EPIDEMIC.
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FOR EXAMPLE, WE WOULD NOT PERMIT EXPEDITIOUS DRUG TESTING IN

CHILDREN UNDER THE KIND OF “HUMANE I.N.D.” MECHANISM THAT HAS
BEEN USED FOR A.Z.T. AND ADULT AIDS PATIENTS. AND THERE ARE GOOD
ETHICAL REASONS FOR LIMITING CLINICAL DRUG TRIALS IN INFANTS AND
CHILDREN,

I DON’T KNOW HOW TO RESOLVE THAT PARTICULAR PROBLEM, BUT |
KNOW WE’LL HAVE TO CONFRONT IT THE MOMENT A RESEARCHER COMES UP
WITH A DRUG THAT JUST MIGHT ALLEVIATE -- OR POSSIBLY REVERSE --
AN AIDS-RELATED CONDITION AMONG CHILDREN WITH AIDS,
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WE ALSO HAVE TO FACE THE FACT THAT NEARLY ALL THE CHILDREN

BORN WITH AIDS THUS FAR ARE IN THOSE MAJOR METROPOLITAN AREAS
WITH HIGH CONCENTRATIONS OF BLACK AND HISPANIC MINORITIES: NEW
YORK, MIAMI, LOS ANGELES, WASHINGTON, D.C., AND NEWARK, NEW
JERSEY, FOR EXAMPLE.

THESE ARE THE SAME AREAS IN WHICH MEDICAL AND PUBLIC HEALTH
PERSONNEL HAVE BEEN FIGHTING ENORMOUS ODDS IN THEIR DAY-TO-DAY
EFFORT TO DELIVER EFFECTIVE PRIMARY HEALTH CARE ... WELL-BABY
CARE, HYPERTENSION SCREENING, MATERNAL AND CHILD NUTRITION,
TREATMENT FOR SUBSTANCE ABUSE, AND SO ON.
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BUT THE TASK ASSOCIATED WITH AIDS IS A HUNDRED TIMES MORE

COMPLEX, NOT ONLY FOR HEALTH PROFESSIONALS BUT ALSO FOR THE
COMMUNITY RESIDENTS THEMSELVES.

SUSPICION ... DENIAL ... GUILT ... FRUSTRATION ... ANGER ...
ALL THESE FEELINGS WHICH ALREADY CLOUD THE PUBLIC HEALTH PICTURE
IN THESE INNER CITY ENVIRONMENTS ARE EVEN MORE EVIDENT WHEN THE
SUBJECT IS AIDS.

THESE ARE THE KINDS OF ISSUES AND QUESTIONS THAT ARE ALSO
ON OUR PEDIATRIC AIDS AGENDA. AND NONE OF THEM IS EASY.
 

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I CAME TODAY TO PROVIDE YOU WITH A BRIEF UPDATE ON WHERE WE

STAND IN THE MATTER OF PEDIATRIC AIDS.

I WISH I COULD HAVE COME PREPARED TO RECITE A NUMBER OF
MAJOR ADVANCES ... RESEARCH BREAKTHROUGHS ... OR OTHER EVIDENCE
OF DRAMATIC PROGRESS. BUT WE JUST AREN’T THERE YET.

HOWEVER, I BELIEVE THE BREAKTHROUGHS WILL COME, AS A RESULT
OF NEW INTEREST AND ATTENTION BY THE PEDIATRIC PROFESSION -- NOT
ONLY BY ITS LEADERSHIP, SUCH AS THE STAFF HERE AT THE GEORGETOWN
UNIVERSITY CHILDREN’S MEDICAL CENTER, BUT ALSO BY THE YOUNG MEN
AND WOMEN JUST ENTERING THE FIELD ... YOUR STUDENTS.
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T HAVE SAID THAT OUR BEST HOPE IN THE BATTLE AGAINST AIDS IS

EDUCATION ... EDUCATION ... AND MORE EDUCATION, SO THAT PEOPLE
WILL AVOID THOSE BEHAVIORS THAT LEAD TO THE TRANSMISSION OF THE
AIDS VIRUS,

I STILL BELIEVE THAT’S THE CASE,

BUT IN THE MEANTIME, THE TOLL OF AIDS AMONG CHILDREN
CONTINUES TO RISE.
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YESTERDAY, THERE WERE A FEW HUNDRED ... TODAY, OVER A

THOUSAND ... TOMORROW, POSSIBLY 10 OR EVEN 20 THOUSAND CHILDREN
MAY BE INFECTED WITH H.1.V.

THEY WILL NEED OUR HELP. AND WE MUST BE READY TO PROVIDE
ALL THE HELP WE CAN,

THANK YOU.
HHH # #