AIDS AND AMFRICAN VALUES " BY C, EVERETT KOOP, MD, ScD SURGEON GENIERAL OF THE U, S, PUBLIC HEALTH SERVICE U, S. DEPARTMENT OF HEALTH ANB HUMAN SERVICES PRESENTED TO THE U,S, STATE DEPARTMENT ADVISORY COMMITTEE ON OCEANS AND INTERNATIONAL ENVIRONMENTAL AND SCIENTIFIC AFFAIRS 'WASHINGTON, DL OCTOBER 28, 1987 1 .(GREETINGS TO HOSTS, GUESTS, FRIENDS, ETC,> THANK YOU FOR YOUR INVITATION,,,YOUR KIND WORDS,,,AND YOUR CONTINUED SUPPORT FOR AMERICA'S LEADERSHIP ROLE IN INTERNATIONAL HEALTH, WITH SO MUCH ATTENTION FOCUSED ON THE WORLD PANDEMIC OF AIDS THESE DAYS -- AND IT CERTAINLY DESERVES OUR ATTENTION -- WE TEND TO LOSE SIGHT OF OTHER MAJOR HEALTH PROBLEMS IN THE WORLD, ,,PROBLEMS WHICH, AT THE PRESENT TIME AT LEASTmCLAIM MANY MORE LIVES AND EXHAUST MANY MORE OF THE FISCAL AND HUMAN RESOURCES OF MOST COUNTRIES THAN DOES AIDS, 2 AND I MEAN TO TALK ABOUT AIDS AT TH.IS LUNCHEON, AS I PROMSIED JO DO, BUT IT WOULD A MISTAKE TO Db THAT, IN MY OPINION, WITHOUT SETTING MY REMARKS WITHIN THE CONTEXT OF OTHER ISSUES IN WORLD HEALTH,,,ESPECIALLY THE HEALTH OF CHILDREN. FOR EXAMPLE, THE 6 MAJOR COMMUNICABLE DISEASES OF CHILDHOOD STILL TAKE THE LIVES OF AN ESTIMATED 5 MILLION CHILDREN EVERY YEAR. ABOUT AN EQUAL NUMBER OF CHILDREN MANAGE JO SURVIVE, BUT THEY CARRY THE SCARS OF DISEASE FOR THE REST OF THEIR LIVES. 3 THERE IS A VACCINE FOR EACH OF THESE DISEASES, THESE VACCINES HAVE BEEN GENERALLY AVAILABLE HERE IN THE UNITED STATES, AS A RESULT, MOST OF THESE DISEASES OF CHILDHOOD ARE VIRTUALLY DISAPPEARING FROM AMERICAN SOCIETY: POLIO,,,TETANUS,,,DIPHTHERIA,,,WHOOPING COUGH, BUT THESE VERY SAME VACCINES HAVE YET TO PENETRATE ALL THE VILLAGES AND CROSS-ROADS OF THE DEVELOPING WORLD, IN FACT, THE DELIVERY OF IMMUNIZATION SERVICES THROUGHOUT THE DEVELOPING WORLD IS ONE OF THE GREAT TECHNOLOGICAL CHALLENGES FACING CONTEMPORARY MEDICINE, I TALKED WITH JIM GRANT, DIRECTOR OF UNICEF LAST WEEK AND HE HAS SOME INNOVATIVE IDEAS TO EXTEND THEIR CHILD IMMUNIZATION EFFORTS, 4 AS YOU ALL WELL KNOW THE UNITED STATES HAS BEEN CONTRIBUTING SUBSTANTIALLY TO THE "EXPANDED PROGRAM ON IMMUNIZATION," SPONSORED BY THE WORLD HEALTH ORGANIZATION, BOTH THE US, PUBLIC HEALTH SERVICE AND THE AGENCY FOR INTERNATIONAL DEVELOPMENT REPRESENT OUR COUNTRY IN THAT IMPORTANT WORLDWIDE EFFORT, I AM TALKING ABOUT EXPERTISE AND MANPOWER AS WELL AS MONEY. WE'VE ALSO JOINED WITH W,H,O, IN IDENTIFYING THE MAJOR PARASTIC DISEASES AS AMONG OUR BIG TARGETS OF INTERNATIONAL SCIENCE AND MEDICINE, 5 m FOR EXAMPLE, WHICH, IN SOME AREAS OF AFRICA STRIKES AND DEBILITATES EVERY CHILD OVER THE AGE OF 1, .SCHISTOSOMIASIS, OR "SNAIL FEVER," IS A GLOBAL DISEASE THAT AFFECTS AN ESTIMATED 180 MILLION PEOPLE..,A STAGGERING BURDEN OF ILLNESS FOR THE HUMAN RACE, AND JRYPANOSOMIASIS, OR "SLEEPING SICKNESS," WAS ONE OF THOSE DISEASES ALWAYS MENTIONED IN THOSE STEAMY JUNGLE NOVELS OF THE LAST CENTURY. FOR A WHILE THE SITUATION SEEMED TO BE IMPROVING, BUT PRESENT-DAY CONTROL MEASURES SEEM TO BE INADEQUATE, AND "SLEEPING SICKNESS" IS ON THE RISE. 6 SO WE CAN TAKE PRIDE IN SOME OF OUR ACHIEVEMENTS OVERSEAS,,, IN THE IMMUNIZATION PROGRAM AND ESPECIALLY IN THE EXPANSION OF ORAL RE- HYDRATION THERAPY IN THE THIRD WORLD. BUT THERE IS CLEARLY A GREAT DEAL OF NECESSARY WORK STILL TO BE DONE. AND I FULLY EXPECT OUR COUNTRY WILL BE ON HAND JO HELP DO IT, NOT ONLY AS YOUR SURGEON GENERAL, BUT ALSO IN*MY ROLE AS ' DIRECTOR OF THE P,H,S, OFFICE OF INTERNATIONAL HEALTH, I HAVE VISITED OVERSEAS MANY TIMES AND I AM CONSTANTLY -REMINDED OF THE EXTENT TO WHICH THE UNITED STATES lSeA,P.EGsARDED,.AS ,A BEACON OF GOOD. SENSE AND GOOD SCIENCF BY THE REST OF THE WORLD, 7 AND THE OTHER NATIONS OF THE WORLD SORELY NEED USwAS, INDEED, j&NEED JHEM, ALSO, IN OUR COLLECTIVE AND CONTINUING BATTLE AGAINST DISEASE. THIS IS ESPECIALLY EVIDENT IN THE CASE OF THE WORLD o PANDEMIC OF THE ACQUIRED IMMUNE DEFICIENCY SYNDROME, OR "AIDS." AS OF AUGUST, THE REPORTED AIDS CASE-LOAD IN COUNTRIES OTHER THAN THE UNITED STATES HAD REACHED 14,600. IT'S FAIR TO SAY THAT THIS FIGURE IS WELL BELOW WHAT THE TRUE FIGURE MIGHT BE, SINCE AIDS IS VERY UNDER-REPORTED, FOR INSTANCE, ABOUT 17 COUNTRIES IN AFRICA REPORT EITHER 1 CASE OR NO CASES AT ALL, WHILE OTHER COUNTRIES -- SOME SHARING COMMON BORDERS -- REPORT 300,,,700,,,AND 1,100 CASES OF AIDS. 8 THE WORLD HEALTH ORGANIZATION, SAYS, HOWEVER, THAT THE NUMBERS ARE CLIMBING STEEPLY AND THAT, OVER THE NEXT 5 YEARS, THE WORLD COULD ADD ANYWHERE FROM ANOTHER HALF-MILLION TO ANOTHER J. MIILIOL NEW CASES OF AIDS, I AM PLEASED THAT THE PRESIDENT HAS ASKED THE CONGRESS TO APPROPRIATE THE FULL US, CONTRIBUTION TO THE UNITED NATIONS, AND ESPECIALLY TO THE WORLD HEALTH ORGANIZATION, BUT THAT REQUEST IS ALL THE MORE IMPORTANT NOW THAT THE SOVIET UNION IS PAYING UP IN FULL, . BUT IN ANY CASE, WE WILL NEVER GET CONTROL`OVER THIS DISEASE HERE IN THE UNITED STATES, AS LONG AS IT RAGES UNCONTROLLED ELSEWHERE IN THE WORLD, AND CONTROLLING IT TAKES MONEY, IT WILL BE TERRIBLY SELF-DEFEATING, IF JHE UNITED STATES DOES NOT PAY ITS FULL ASSESSMENT TO THE UNITED NATIONS AND THUS, WILL NOT ENABLE.~HE WORLD HEALTH ORGANIZATION JO BE AN EFFEcJIVE WORLD LEADER IN.THE FIGHT AGAINST AIDS. I FIRMLY BELIEVE THAT THE UNITED STATES MUST BE A FULL PARTNER WITH ALL OTHER COUNTRIES, IN THIS FIGHT AGAINST AIDS. THAT'S A MORAL CHOiCE THAT WE MUST MAKE. IT MUST NOT BE DETERMINED BY ElTkR POLITICS OR ECONOMICS. AND NOW, LET ME MOVE AHEAD AND SPEND THE NEXT FEW MOMENTS REVIEWING WITH YOU SOME OF THE OTHER DIFFICULT CHOICES THAT LIE AHEAD OF US, RELATIVE TO THE PANDEMIC OF AIDS. 10 FIRST, LET ME REMIND YOU THAT THE THREE ASPECTS OF AIDS THAT COLOR EVERYTHING DONE AND SAID ABOUT THE DISEASE ARE, ,,ONE, THAT IT IS STILL A MYSTERYwTWO, THAT IT IS FATAL,, SAND THREE, THAT PEOPLE GET AIDS BY DOING THINGS THAT THE MAJORITY OF PEOPLE DON'T DO AND DON'T APPROVF OF, WE NEED TO KEEP THESE THREE THINGS IN MIND, BECAUSE NOT ONLY DO THEY OBSCURE THE MANY SCIENTIFIC ISSUES SURROUNDING-AIDS BUT THEY ALSO TEND TO FOCUS OUR ATTENTION ON THE MORE SENSITIVE AND VOLATILE ISSUES OF LAW, ETHICS, ECONOMICS, MORALITY, AND SOCIAL COHESION THAT SURROUND AIDS, 11 FOR EXAMPLE, WE ARE ALREADY WITNESSING THE ASSAULT BY JHI~ DISEASE UPON THE ETHICAL FOUNDATION OF HEALTH CARE ITSELF. DESPITE THE SENSIBLE AND RATHER ELEMENTARY GUIDELINES ISSUED JO THE HEALTH PROFESSIONS BY OUR CENTERS FOR DISEASE CONTROL, WE STILL HEAR -- EVERY DAY -- OF PHYSICIANS, DENTISTS, NURSES, AND OTHER HEALTH PERSONNEL WHO REFUSE TO TREAT PERSONS WITH AIDSmOR EVEN JO TREAT PERSONS WHOM THEY SUSPECT OF HAVING AIDS, LET ME QUICKLY ADD THAT THIS IS NOT CHARACTERISTIC OF HEALTH PROFESSIONALS BY ANY MEANS, ON THE CONTRARY, THE OVERWHELMING MAJORITY OF MY COLLEAGUES HAVE PROVIDED -- AND WILL CERTAINLY CONTINUE TO PROVIDE -- QUALITY, COMPASSIONATE CARElTO PERSONS DYING OF AIDS, 12 BUT THE GOOD CONDUCT OF THE MAJORITY SHOULD NOT IN ANY WAY SHIELD THE UN-PROFESSIONAL CONDUCT OF A FEARFUL AND IRRATIONAL MINORIJY. WELL, WHAT SHOULD WE DO ABOUT THAT?' I THINK THAT'S AN IMPORTANT QUESTION, BECAUSE HEALTH CARE IN THIS COUNTRY HAS ALWAYS BEEN PREDICATED ON THE ASSUMPTION THAT -- SOMEHOW -- EVERYONE WHO NEEDS HEALTH CARE WILL @&EIVE HEALTH CARE. AND NO ONE WILL BE TURNED AWAY. AS A PHYSICIAN -- AND AS AN AMERICAN -- I'M PROUD TO BE PART OF A TRADITION OF CARE THAT WILL NOT ABANDON THE SICK,AND THE DISABLED ,,,)!HOEVER THEY ARE 8 13 HENCE, I REGARD AS EXTREMELY SERIOUS THE REPORTS OF A FEW PHYSICIANS AND OTHERS WHO ARE WITHHOLDING CARE FROM PERSONS WITH AIDS, THEIR CONDUCT THREATENS THE VERY FABRIC OF HEALTH CARE IN THIS COUNTRY. ONE DAY SOON, WE WILL HAVE TO CONFRONT THAT ISSUE AND COME UP WITH SOME GOOD ANSWERS, OTHERWISE THE VIRUS OF AIDS WILL FURTHER WEAKEN THE ETHICS OF MEDICAL PRACTICE IN THE UNITED STATES. AND THAT WOULD BE ANOTHER AND JUST AS SOCIETY, A RELATED ISSUE CONCERNS THE WHO SHOULD PAY THOSE THAT COSTS? DEADLY A KIND OF EPIDEMIC FOR OUR COST OF CARE FOR AIDS PATIENTS: 14 AS YOU KNOW, WE HAVE A MIXED SYSTEM OF SUPPORT FOR HEALTH CARE IN THIS COUNTRY: PRIVATE METHODS OF PAYMENT EXIST SIDE-BY-SIDE WITH PUBLICLY SUPPORTED SYSTEMS OF REIMBURSEMENT FOR CARE. THE AMERICAN TAXPAYER SUPPORTS MATERNAL AND CHILD HEALTH PRO- GRAMS, FOR EXAMPLE, AND DIABETES CONTROL AND HYPERTENSION SCREENING PROGRAMS, TAXPAYERS ALSO SUPPORT PROGRAMS FOR ALCOHOLICS, DRUG ADDICTS, AND SYPHILITICS. THOSE PROGRAMS THAT CLEAN UP AFTER PEOPLE WHO BEHAVE POORLY ARE NOT REALLY EXPENSIVE JO RUN, IN ADDITION, THEY ARE GEARED TO BRING -- OR TO BRING BACK- -- MEN, WOMEN, AND CHILDREN JO A STATE OF GOOD HEALTH, 15 BUT AIDS IS QUITE DIFFERENT, IT IS BOTH TECHNOLOGY- AND LABOR-INTENSIVE AND COSTS $20,000 PER YEAR -- AND MORE -- FOR THE AVERAGE AIDS PATIENT, THEN, AFTER CONSUMING TENS OF THOUSANDS OF DOLLARS WORTH OF MEDICAL CARE AND SOCIAL SERVICESwTHE AIDS PATIENT DIES, THE AIDS CASE-LOAD IS CLIMBING, SO ARE THE COSTS, IN 1991, WE ANTICIPATE LOGGING IN 74,000 NEW AIDS PATIENTS, THE TOTAL COST OF PATIENT CARE THAT YEAR WILL BE AT LEAST $8 BILLION,, aAND AS MUCH AS $16 BILLION, 16 WILL THE AMERICAN PEOPLE CONTINUE TO SUPPORT HIGH-COST PATIENT CARE FOR PEOPLE WITH AIDS? WILL THEY ASK FOR RELIEF? OR WILL THEY SUPPORT A KIND OF "SECOND-CLASS CARE" 'FOR AIDS PATIENTS? I'D LIKE TO SAY I HAD FIRM ANSWERS TO THOSE QUESTIONS. BUT I DON'T HAVE, NONE OF US HAS. YET, BuL OF US SHOULD BE HIGHLY CONCERNED ABOUT THE ANSWERS THAT WILL EVOLVE OVER THE YEARS AHEAD. NEXT, I WANT TO BRING UP THE ISSUE OF "INDIVIDUAL PRIVACY VERSUS THE NEED TO PROTECT THE COMMUNITY FROM DANGER." I DON'T BELIEVE EITHER SIDE OF THIS QUESTION CAN RECEIVE AN ABSOLUTE RESPONSE. BUT HOW MUCH LEEWAY DO WE HAVE,, AS A FRE'E BUT RESPONSIBLE PEOPLE? HOW MUCH RISK CAN THE COMMUNITY REALLY TOLERATE . IN ORDER TO PRESERVE THE RIGHTS OF EACH INDIVIDUAL JdITHu THE COMMUNITY? 17 IT SEEMS TO ME THAT THIS IS THE HEART OF THE DEBATE OVER CONFIDENTIALITY IN RECORDS, AS MANY OF YOU KNOW, IT'S BEEN A LONG-STANDING PRACTICE IN PUBLIC HEALTH TO PROMISE FULL CONFIDENTIALITY IN ORDER TO GET AS MUCH SENSITIVE, HEALTH-RELATED INFORMATION AS POSSIBLE FROM INDIVIDUALS. WITHOUT SUCH A SYSTEM, WE WOULD NEVER HAVE SUCCEEDED IN CONTAINING MOST INFECTIOUS DISEASES, AS WE HAVE DONE. BUT NO PREVIOUS DISEASE HAS BEEN AT ONCE SO j!YSlfRIOUS, SO FATAL AND SO R S S 1. 18 NEARLY ALL PUBLIC HEALTH PROFESSIONALS WITH WHOM I'VE DISCUSSED THIS MATTER BELIEVE THAT THE ASSURANCE OF TOTAL CONFIDENTIALITY IS THE KEY TO HAVING POTENTIAL -- AND ACTUAL -- CARRIERS OF THE AIDS VIRUS PRESENT THEMSELVES FOR VOLUNTARY TESTING AND COUNSELING. BUT IS TOTAL CONFIDENTIALITY EVEN POSSIBLE? LET ME OFFER AN EXAMPLE INVOLVING THE WORK OF MY OWN OFFICE. EARLIER THIS YEAR I WAS ASKED BY THE DEPARTMibiT OF JUSTICE TO LOOK AT THE ISSUE OF CHILD SEXUAL.ABUSE, WITHeTHE HELP OF A NUMBER 3F HEALTH AND LAW ENFORCEMENT EXPERTS FROM AROUND THE COUNTRY, I'VE BEEN DEVELOPING A DRAFT STATEMENT TO THE HEALTH PROFESSIONS REGARD- ING THE CARE AND TREATMENT OF CHILD VICTIMS OF SEXUAL ABUSE. 19 AMONG THE RECOMMENDATIONS MORE PERTINENT IN AREAS OF HIGH HIV PREVALENCE IS ONE THAT ADVISES HEALTH PERSONNEL TO ADMINISTER A NUMBER OF TESTS,, JNCLUDING A TEST FOR THE PRESENCE OF AIDS, IN OTHER WORDS, WE BELIEVE A HEALTH WORKER SHOULD CHECK TO SEE IF THE PERPETRATOR PASSED THE AIDS VIRUS TO THE CHILD VICTIM DURING THE SEXUAL ATTACK, WE NEED TO HAVE THAT INFORMATION BECAUSE A CHILD WHO HAS A SYMPTOMATIC AIDS-RELATED INFECTION SHOULD NOT RECEIVE ANY LIVE- VIRUS OR LIVE-BACTERIAL VACCINES, THE MOST RECENT PUBLIC HEALTH SERVICE RECOMMENDATIONS ADVICE THAT SUCH CHILDREN BE GIVEN INACTIVATED POLIO VACCINE, FOR EXAMPLE, AND SHOULD BE EXCUSED FROM BEING IMMUNIZED FOR MEASLES, RUBELLA, AND/OR MUMPS, 20 WE DON'T YET HAVE ALL THE FACTS YET IN THIS PARTICULAR AREA, BUT IT IS CLEARLY A POSSIBILITY THAT, FOR THE CHILD WITH AIDS, VACCINATION ITSELF COULD BE LIFE-THREATEMNG, " NATURALLY, THE PARENTS SHOULD BE TOLD IF THEIR CHILD IS SERO- POSITIVE, AND THE FAMILY PHYSICIAN, ALSO, IF THERE IS ONE, BUT SHOULD THE SCHOOL BE TOLD? SHOULD THE CHILD'S RELIGIOUS CONGREGATION BE TOLD? HOW MUCH OF THE PUBLIC REALLY HAS A "NEED TO KNOW" WHETHER OR NOT THE CHILD VICTIM IS SEROPOSITIVE?, 21 I MAINTAIN THAT THE ISSUE OF CONFIDENTIALITY WOULD NEVER HAVE COME UP, HAD IT NOT BEEN FOR A NUMBER OF INSTANCES IN WHICH PERSONS KNOWN Tii HAVE AIDS WERE FIRED FROM THEIR JOBS. ,.DENIED INSURANCE.., EVICTED FROM HOUSING,,,SENT HOME FROM SCHOOLmAND SO ON, SUCH REACTIONS ARE IRRATIONAL, UNFAIR, AND DISCRIMINATORY. WHAT SHOULD WE DO ABOUT IT? HOW SHOULD WE DEAL WITH THEM.? SOME PEOPLE ARGUE THAT IT IS dlpL DISCRIMINATORY TO DENY HOUSING OR MEDICAL CARE OR ANY OTHFR ESSENTIAL SERVICE TO A PERSON WHO CONTRACTED AIDS WHILE SHOOTING DRUGS OR ENGAGING IN SODOMY. 22 BUT AMERICAN PUBLIC POLICY HAS ALWAYS BEEN IN THE DIRECTION OF REDUCING -- OR ELIMINATING ALTOGETHER -- ANY ELIGIBILITY CRITERIA FOR RECEIVING ESSENTIAL PUBLIC SERVICES, SHOULD AIDS BE THE EXCEPTION? AND WHY? FINALLY, AND PROBABLY MOST IMPORTANT OF ALL, WE SEE MORE EVIDENCE EVERY DAY THAT THIS DISEASE IS BECOMING THE PARTICULAR SCOURGE OF PEOPLE WHO ARE YOUNG, BLACK, AND HISPANIC, HOW TRAGIC FOR THEM. AND HOW TRAGIC FOR /iMERICk, 23 THE UNITED STATES IS ONLY NOW EMERGING FROM TWO DECADES OF TUR- MOIL, DURING WHICH WE HAVE TRIED TO CORRECT THE SOCIAL INJUSTICES OF THE PAST, WE HAVE FINALLY EXTENDED TO ALL AMERICANS -L REGARDLESS OF'RACE, COLOR, CREED, ETHNIC ORIGIN, RELIGION, AGE, OR SEX -- THE BIRTHRIGHT OF FREEDOM THAT IS THEIRS. WILL THE DISEASE OF AIDS -- ALL BY ITSELF -- REVERSE THIS TREND IN OUR NATION'S HISTORY? WE HOPE AND PRAY THAT IT WILL NOT. BUT HOPES AND PRAYERS MAY NOT BE ENOUGH, WE WILL NEED COURAGEOUS LEADERSHIP AT ALL LEVELS OF GOVERNMENT AND THROUGHOUT OUR SOCIAL AND POLITICAL INSTITUTIONS TO REINFORCE THOSE HOPES AND PRAYERS, 24 IT'S APPROPRIATE TO ASK THAT QUESTION OF OUR GOVERNMENT. BUT WE CANNOT STOP THERE, WE NEED TO MAKE SURE THAT EVERY AMERICAN UNDERSTANDS JUST WHAT IS AT STAKE HERE AND THAT HE OR SHE WILL DO WHATEVER IS NECESSARY TO MAKE SURE THAT OUR COUNTRY NEVER RETURNS IN FEAR AND HATRED TO THE WAYS OF A SHAMEFUL PAST, AS THE PRESIDENT HAS SAID, WE MUST COME TOGETHER AND FIGHT THIS DISEASE WiTH EVERYTHING AT OUR COMMAND, &IT WE MUST m FIGHT THE THE PEOPLE WHO HAVE IT, ARE WE TRULY A MATURE ENOUGH'SOCIETY' Tb'BE'eULOA-BLIND IN THIS WAR AGAINST AIDS? I SINCERELY HOPE WE ARE. 25 THESE MD OTHER ISSUES LIE ON THE HORIZON BEFORE us, BUT THE HORiZON IS NOT THAT FAR AWAY. I HOPE WE WILL NOT STUMBLE ACROSS THAT TERRAIN, UNPREPARED FOR THE CHALLENGES THAT LIE BEYOND. I HOPE WE WILL BEGIN TO TALK ABOUT THESE ISSUES AS THE WISE, 200-YEAR-OLD SOCIETY WE PROFESS TO BE, IF WE DO, WE MAY GIVE THE WORLD SOMETHING EVERY BIT AS PRECIOUS AS THE MUCH-DESIRED AIDS VACCINE: WE WILL SHOW THE WORLD HOW COMPASSION AND JUSTICEmNOT SCIENCE ALONE,, aCAN TRIUMPH OVER DISEASE. ONCE AGAINmTHANK YOU. #####