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REMARKS
BY

C, EVERETT KOOP, M.D.
SURGEON GENERAL

OF THE
U. §. PUBLIC HEALTH SERVICE
PRESENTED TO THE

FIRST INTERNATIONAL CONFERENCE
ON THE GLOBAL IMPACT OF AIDS

LONDON, ENGLAND
MARCH 10, 1988
WE'VE HAD THREE DAYS TO LOOK AT ALL THE MYRIAD RAMIFICATIONS
OF AIDS UPON THE HEALTH OF INDIVIDUALS -- AND OF SOCIETIES. I
HAVE BEEN ASKED TO ADDRESS ONE OF THE NOW-MEDICAL ISSUES: THAT
1S, HOW DOES THE AIDS EPIDEMIC AFFECT THE BALANCE BETWEEN
INDIVIDUAL FREEDOM AND THE PUBLIC INTEREST?

ONE OF THE EXTRAORDINARY ASPECTS OF THIS EPIDEMIC, BY THE
WAY, IS THE VERY FACT SUCH AN ISSUE CAN BE RAISED AT ALL -- AND
IT DOES NOT SEEM OUT OF PLACE.
WE TALK OF INDIVIDUAL FREEDOM -- OF PROFESSIONAL
RESPONSIBILITY -- OF CIVIL RIGHTS AND WRONGS -- AND OF MANY OTHER
ISSUES WHICH SEEM TO BE APPROPRIATE IN THE CONTEXT OF THE AIDS
EPIDEMIC, BUT WHICH WOULD BE OF MARGINAL INTEREST -- OR Or NO

INTEREST AT ALL -- IN THE CONTEXT OF ALMOST ANY OTHER INFECTIOUS
DISEASE.

WITH THE POSSIBLE EXCEPTION OF LEPROSY. IN AilY EVENT, FOR
THE NEXT FEW MINUTES 1 WOULD LIKE TO EXPLORE THIS ISSUE OF
INDIVIDUAL FREEDOM AND THE PUBLIC INTEREST.
ONE WAY WOULD BE TO DO IT IN AN ABSTRACT PHILOSOPHICAL
FASHION. FOR EXAMPLE, PEOPLE IN OUR SOCIETY ONCE GIVEN THE FACTS
ARE ABLE TO MAKE A FREE CHOICE ON THE BASIS OF THOSE FACTS AND
THEY INDIVIDUALLY AND COLLECTIVELY WILL BENEFIT,

THAT’S THE THEORY,

CONVERSELY, THE PERSON IN OUR SOCIETY WHO DOES NOT KNOW THE
FACTS OF LIFE AND HEALTH -- FACTS THAT ARE KNOWN BY MOST OF HIS
OR HER NEIGHBORS -- THAT IS NOT A FREE INDIVIDUAL, ABLE TO MAKE A
CHOICE -- THAT'S NOT A THEORY. IT IS REALITY.
SUCH A PERSON -- IN THE REAL WORLD OF OUR INNER CITIcS, FOR
EXAMPLE -- MAY LACK INFORMATION ABOUT NUTRITION, ABOUT PERSONAL
AND ENVIRONMENTAL SAFETY. AND ABOUT A GREAT MANY OTHER ASPECTS OF
DAILY LIFE THAT SHAPE HIS OR HER DAY-TO-DAY EXISTENCE.

AND WE -- WHO NOW FEEL A COMPELLING NEED TO RELAY
INFORMATION ABOUT AIDS TO HUNDREDS OF THOUSANDS OF SUCH
INDIVIDUALS AT RISK FOR INFECTION -- WE MUST FACE THE POSSIBILITY
THAT OUR MESSAGES TODAY ABOUT AIDS MAY BE AS UNSUCCESSFUL AS OUR
MESSAGES YESTERDAY ABOUT DIET AND FAMILY PLANNING AND SMOKING AND
FIRE PREVENTION AND SYPHILIS AND ALCOHOL ABUSE.
WE'VE TRIED TO DELIVER THE FACTS ABOUT THOSE AND MANY OTHER
PUBLIC HEALTH MATTERS IN ORDER TO HELP OUR CITIZENS FREELY MAKE
THEIR OWN CHOICES OF BEHAVIOR BASED ON GOOD INFORMATION -- IN
OTHER WORDS, TO HELP THEM ACT AS FREE PEOPLE SHOULD ACT. FOR
THEIR OWN BENEFIT AS WELL AS FOR THE BENEFIT OF THEIR COMMUNITY
OR SOCIETY.

BUT -- FOR WHATEVER REASONS -- THEY HAVE NOT BEEN ABLE TO
USE THE INFORMATION AND, THEREFORE. 1 WOULD SUBMIT THAT THEY ARE

NOT FREE.
 

BUT I THINK YOU WOULD PREFER THAT I SPEAK TO THE SPECIFIC
ISSUE OF HOW WE SERVE THE PUBLIC INTEREST AND PERMIT INDIVIDUAL
EREEDOM WHICH IS THE HALLMARK OF OUR SOCIETY IN THE GLOBAL SENSE.

BEFORE ADDRESSING THE PROBLEM 1 MUST REMIND YOU THAT -- AT
LEAST IN THE UNITED STATES -- EVERYTHING THAT IS THOUGHT, SAID.
AND DONE ABOUT AIDS 1S COLORED BY THREE FACTS:

o IN SPITE OF ALL WE KNOW ABOUT AIDS. IT 1S STILL SOMEWHAT
OF A MYSTERY, ESPECIALLY TO NON-MEDICAL PEOPLE!

o THE DISEASE IS VIRTUALLY 100% FATAL.
o PEOPLE GET AIDS BY DOING THINGS MOST PEOPLE DO NOT DO AND
OF WHICH MOST PEOPLE DO NOT APPROVE,

THE RESECTION OF SUCH INDIVIDUALS COUPLED WITH THE FEAR Awl
MYSTERY OF AIDS INEVITABLY MEANS THAT THE DIAGNOSIS OF AIDS WILL
BEAR A STIGMA,

THIS STIGMA -- AT LEAST IN THE U.S. -- HAS BEEN KNOWN TO
DEPRIVE ONE OF HIS RENTED HOUSING, KEEP A FAMILY FROM GOING TO
THE BARBER, SHOPPING AT THE SUPERMARKCT. ATTENDING SCHOOL OR
CHURCH,

SUCH OSTRACISM HAS LED TO A HEIGHTENED SUICIDE RATE AMONG
PERSONS WITH AIDS AND, IN AT LEAST ONE INSTANCE. THE ARSON OF THE
HOME OF THREE HIV POSITIVE CHILDREN WITH HEMOPHILIA.
SUCH UNFAIR AND UNJUST TREATMENT OF A FAMILY POINTS OUT ThE
WIDELY HELD PUBLIC HEALTH POSITION OF THE NEED FOR
CONFIDENTIALITY WITH HIV TEST RESULTS AND WITH THE DIAGNOSIS OF
PERSONS WITH AIDS.

CONFIDENTIALITY IS NOT IN CONFLICT WITH THE PURSUIT OF THE
PUBLIC’S INTEREST IN THE LONG TERM, INDEED IT AUGMENTS IT BY NOT
DRIVING THE AIDS PATIENT UNDERGROUND. BY PERMITTING HIS/HER
TREATMENT OF OTHER STDS, BY WINNING CONFIDENCE. THUS ENABLING
COUNSELLING OF THE INDIVIDUAL AND HIS/HER SEXUAL CONTACTS OR DRUG
SHARiiG PARTNERS.
IN THE MATTER OF TESTING, I NAVE ARGUED AGAINST ANY KIND OF
UNIVERSAL COMPULSORY TEST FOR AIDS. EVEN THE MOST SENEROUS
ESTIMATE OF THE NUMBER OF PEOPLE WALKING AROUND WITH THE VIRUS
TODAY -- AND IT’S CURRENTLY 1.5 MILLION AT THE OUTSIDE -- EVEN
THAT ESTIMATE IS AN EXTREMELY SMALL FRACTION OF THE TOTAL U.S.
POPULATION OF 240 MILLION, |

AND, IN ANY CASE, WE ALREADY KNOW THAT 90 PERCENT OF ALL
PERSONS WITH AIDS THUS FAR HAVE EITHER BEEN 1.V. DRUG ABUSERS OR
HOMOSEXUALS OR BISEXUAL MEN, AND THESE TWO GROUPS ARE THEMSELVES
NOT LARGE.
10

IN ADDITION, THE OVERWHELMING MAJORITY OF HOMOSEXUALS AND
BISEXUAL MEN HAVE BEEN UNTOUCHED BY THE EPIDEMIC. APPARENTLY
ONLY A MINORITY OF THESE INDIVIDUALS HAVE ENGAGED IN THE KIND OF
SPECIFIC HIGH-RISK BEHAVIOR THAT SPREADS THE VIRUS,

AND WE GATHER FROM SURVEYS DONE HERE AND THERE THAT THIS
COMMUNITY OF MEN HAS UNDERGONE A VERY SERIOUS AND POSITIVE CHANGE
IN BEHAVIOR, WE MIGHT EVEN EXPECT A DECLINE IN THE RATE OF AIDS
REPORTING FROM THIS GROUP IN-A YEAR OR SO,

IF IT SEEMED UNLIKELY BEFORE THE PUBLIC EDUCATION PROGRAMS
THAT ALL HOMOSEXUALS WOULD BE STRICKEN WITH AIDS, IT SEEMS EVEN
LESS SO TODAY.
1]

THE 1.V. DRUG ABUSER PRESENTS US WITH A DIFFERENT PROBLEM,
THE PEOPLE OF THE UNITED STATES SEE THE DRUG HABIT ITSELF AS THE
ISSUE. THE APPEARANCE OF AIDS WITHIN THE DRUG CULTURE IS JUST
ANOTHER POTENTIAL CATASTROPHE FOR THE DRUG ADDICT -- ALONG WITH
HEPATITIS, TUBERCULOSIS. DEMENTIA. STARVATION. SUICIDE, AND SO
ON,

IT’S TRUE THAT MANY DRUG ADDICTS HAVE VOLUNTARILY PRESENTED
THEMSELVES FOR AIDS TESTING .-- BUT WE SUSPECT THAT THE MAJORITY
OF THEM HAVE NOT -- AND WILL NOT,
12

OVER THE YEARS WE‘VE BEEN SINGULARLY UNSUCCESSFUL IN
PENETRATING THE DRUG-ADDICTED CULTURE WITH EVERY OTHER PUBLIC
HEALTH MESSAGE WE'VE EVER HAD -- INCLUDING THE ONE THAT SAYS
“STOP!”

IN ADDITION, THE SHEER VOLUME OF NON-AIDS DRUG-RELATED
DEATHS -- THROUGH DRUG OVERDOSES OR DRUG-INDUCED VIOLENCE -- IS
STILL VERY HIGH: ABOUT 5,000, ACCORDING TO THE F.B.1. AND OUR
OWN NATIONAL INSTITUTE OF DRUG ABUSE. HENCE, THE HEART OF THE
PROBLEM -- AND THE URGENT NEED FOR A SOLUTION -- IS THE ADDICTION
LISELE AND NOT THE SPECIFIC ACT OF NEEDLE-SHARING AMONG ADDICTS,
13

TESTING FOR HIV ANTIBODIES WILL NOT OF ITSELF CONTAIN THE
EPIDEMIC. NOR WILL ANY OF THE MEASURES SOME ADVOCATES OF
MANDATORY TESTING SUPPORT:

SUCH AS: QUARANTINE: USE OF IDENTITY CARDS; COMPULSORY
CONTACT TRACING: PUBLIC RECORDING OF THE IDENTITY OF HIV
POSITIVES.

NONE OF WHICH I SUPPORT.
MANDATORY TESTING HAS A PLACE WITH SOME GROUPS -- cUT NOT

FOR THE MAJORITY, LET ME GIVE AN EXAMPLE OF ONE GROUP WHERE IT
MAKES SENSE AND ANOTHER GROUP WHICH IT DOES NOT:
14

THe ARMED FORCES AND THOSE APPLYING FOR MARRIAGE LICENSES,

THE U.S. ARMED FORCES MANDATE TESTING OF ALL RECRUITS AND
ACTIVE DUTY PERSONNEL -- FOR TWO REASONS:

FIRST. THEY ARE IMMUNIZED AGAINST EVERY DISEASE FOR WHICH
THERE IS A DISEASE. A LIVE VIRUS VACCINATION COULD BE LETHAL TO
HIV POSITIVE PERSONNEL.

SECONDLY, THE ARMED FORCES ARE THEIR OWN WALKING BLOOD
BANK. THE LATTER REASON IS ALSO WHY OUR FOREIGN SERVICE
PERSONNEL ARE TESTED.
15

PRE-MARITAL TESTING ON THE OTHER HAND IS EXPENSIVE AND WOULD
NOT CONTAIN THE EPIDEMIC, THERE WAS A DAY WHEN A NEGATIVE PRt-
MARTIAL TEST FOR SYPHILLIS WAS REQUIRED FOR A MARRIAGE LICENSz,
HOWEVER, THERE WAS NOT ONLY A CURE FOR THE SYPHILLIS, BUT LIVING
TOGETHER OUTSIDE THE BONDS OF MARRIAGE WAS FROWNED UPON, TODAY
THAT IS NOT THE CASE. NOT ONLY IS THERE NO SUCH CURE FOR AIDS,
BUT THE MAJORITY OF THOSE GETTING MARRIED HAVE ALREADY BEEN
LIVING TOGETHER.

UNFORTUNATELY, THOSE WHO PRACTIVE HIGH RISK REHAVIOR, IN
GENERAL. ARE NOT APPLYING FOR MARRIAGE LICENSES,
16

THE COMBINATION OF THE POSSIBILITY OF FALSE POSITIVES AMD
THE STIGMA ACCOMPANYING HIV POSITIVITY IS A RISK MANY YOUNG
PEOPLE DO NOT WISH TO TAKE.

AND FINALLY THE COST BENEFIT RATIO IS VERY HIGH, BECAUSE
ONLY A VERY SMALL NUMBER OF THOSE TESTED WOULD BE TRUE PCSITIVES
IN MOST COMMUNITIES. IN SOME STATES IT WOULD TAKE APPROXIMATELY
$100,000 TO FIND A SINGLE CASE.

ANOTHER AREA WHICH NEEDS MENTIONING IS THE FREEDOM OF THE
PHYSICIAN, NURSE, DENTIST OR OTHER HEALTH CARE WORKcR 10 neFUoL
TO TREAT PATIENTS WITH AIDS OR THOSE THEY MAY THINK MIGHT BE HIV
POSITIVE. THIS FREEDOM IS CERTAINLY NOT IN THE PUBLIC INTEREST.
17

NEVER BEFORE HAVE HEALTH PROVIDERS IN THE U.S. TURNED DOWN A
CLASS OF PATIENTS BECAUSE OF THEIR DIAGNOSES. We NEVER DID IT
FOR LEPROSY, YELLOW FEVER. SMALL POX, INFLUENZA, OR POLIO. ANd
WE MUST NOT DO IT FOR AIDS,

THERE ARE IN THE U.S. MORE THAN SEVEN MILLION HEALTH CARE
WORKERS, FEWER THAN A DOZEN HAVE SERO-CONVERTED BECAUSE OF J03
RELATED ACTIVITY -- AND EIGHT OR NINE OF THEM WOULD NOT HAVE DONE
SO IF THEY HAD FOLLOWED THE SIMPLE GUIDELINES SET DOWN BY THE
CENTERS FOR DISEASE CONTROL SEVERAL YEARS AGO.
13

THE ISSUE OF TESTING PATIENTS IN HOSPITALS FOR HIV
ANTIBODIES IS BEING MANAGED IN MANY PLACES ON A VOLUNTARY BASIS,
WHICH THREATENS NO ONE’S INDIVIDUAL FREEDOM, YET DOES SEEM IN THE
PUBLIC INTEREST.

VOLUNTARY TESTING WITH CONFIDENTIALITY IS BEING URGED IN
MANY CIRCUMSTANCES, ONE MAJOR TARGET GROUP BEING COUPLES WHO
CONTEMPLATE A PREGNANCY,

| ONE CAN HOPE THAT AS WE BECOME MORE FAMILIAR WITH THe
DISEASE OF AIDS. AND AS WE DROP THE MYTHS AND MISINFORMATION THAT
THE STIGMA ASSOCIATED WITH THE DIAGNOSIS WILL DIMINISH AND THAT
INFORMATION AND EDUCATION WILL ULTIMATELY CHANGE BEHAVIOR TO
BRING ABOUT THE CONTAINMENT OF THE EPIDEMIC,
1g

THE ECONOMIC, LEGAL AND ETHICAL IMPLICATIONS OF AIDS ARE
ENORMOUS AND THREATEN THE SOCIAL COHESION OF WHOLE SOCIETIES.
THE CHALLENGE TO MAINTAIN THE BALANCE BETWEEN INDIVIDUAL FREEDOM
AND THE PUBLIC INTEREST IS ALSO ENORMOUS, IF WE CAN MANAGE IT IN
FAIRNESS AND WITH UNDERSTANDING WE MAY GIVE THE WORLD SOMETHING
AS PRECIOUS AS THE SCIENTIFIC BREAXTHROUGH WE ALL SEEK IN
PREVENTION AND TREATMENT. |