Opt-Out Routine HIV Testing : Opt-Out Routine HIV Testing Karen Brudney, MD
Director, Presbyterian Hospital
Infectious Disease/AIDS Clinic
Columbia University
MMWR SEPTEMBER 2006 Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings : MMWR SEPTEMBER 2006 Revised Recommendations for HIV Testing of Adults, Adolescents, and Pregnant Women in Health-Care Settings
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HIV screening is recommended for patients in all health-care settings after the patient is notified that testing will be performed unless the patient declines (opt-out screening).
Persons at high risk for HIV infection should be screened for HIV at least annually.
Separate written consent for HIV testing should not be required; general consent for medical care should be considered sufficient to encompass consent for HIV testing.
Prevention counseling should not be required with HIV diagnostic testing or as part of HIV screening programs in health-care settings. For pregnant women
HIV screening should be included in the routine panel of prenatal screening tests for all pregnant women.
Repeat screening in the third trimester is recommended in certain jurisdictions with elevated rates of HIV infection among pregnant women
CONDITIONS APPROPRIATE FOR A SCREENING TEST: : CONDITIONS APPROPRIATE FOR A SCREENING TEST: SERIOUS HEALTH DISORDER THAT CAN BE DXED BEFORE SYMPTOMS
INFECTED PTS GAIN YEARS OF LIFE IF TREATMENT STARTED BEFORE SX
TEST IS EASY, RELIABLE NON-INVASIVE
COSTS OF SCREENING REASONABLE IN RELATION TO LIVES SAVED
OPT OUT DOES NOT MEAN:: OPT OUT DOES NOT MEAN: Mandatory HIV testing
Mandatory HIV treatment
Dissemination of confidential information
Reducing services for people living with HIV/AIDS
HIV IS A TREATABLE CHRONIC ILLNESS: HIV IS A TREATABLE CHRONIC ILLNESS
HIV TESTING: HIV TESTING IN THE BEGINNING….
THERE WAS NO AIDS : THERE WAS NO AIDS FIRST PUBLISHED DESCRIPTION: MMWR 6/81
FIRST PEER-REVIEWED JOURNAL: NEJM 12/81
HOW WAS AIDS RECOGNIZED IN NYC?: HOW WAS AIDS RECOGNIZED IN NYC? Individual cases presented in Fall 1980 Intercity ID rounds: PCP in gay men: NYH, Harlem, St.Lukes etc.
EARLY REACTIONS: EARLY REACTIONS JUST A FLUKE—LYME, LEGIONNAIRES, TOXIC SHOCK= SERIOUS ILLNESSES
JUST ANOTHER GAY THING LIKE ‘GAY BOWEL’
IS IT REALLY NEW? IF SO, GRID: GAY RELATED IMMUNODEFICIENCY
ETIOLOGY: NITRITES (POPPERS), SPERM ANTIBODIES, CMV???
CDC KS/OI TASK FORCE ESTABLISHED & CASE DEFINITION: CONDITIONS INDICATIVE OF UNDERLYING CELLULAR IMMNODEFICIENCY MMWR 9/24/82
EMERGING EPIDEMIOLOGY: THIS IS A BLOOD BORNE &/OR SEXUALLY SPREAD AGENT: EMERGING EPIDEMIOLOGY: THIS IS A BLOOD BORNE &/OR SEXUALLY SPREAD AGENT MMWR 12/10/82 MMWR 9/24/82
1979-81: the epidemic takes off: 1979-81: the epidemic takes off
SOME MISSTEPS, DENIAL, SELF-DELUSIONS: SOME MISSTEPS, DENIAL, SELF-DELUSIONS Heated resistance by some activists to the idea that gay men should refrain from blood donation (‘the gas chambers are next’).
Blood banks denial of the obvious risks; rejection of directed donation.
Hospitals slow to respond to safety issues.
Health care workers delusion of safety (‘if it’s really contagious we’d all be dead by now’).
HIV EPI: GOOD NEWS, BAD NEWS: HIV EPI: GOOD NEWS, BAD NEWS
REPORTING: REPORTING ALL COMMUNICABLE DISEASE REPORTING IS LOCAL: ALL COUNTIES REPORT TO STATE DOH
SYPHILIS REPORTING MANDATED IN US 1938
DATA SENT FROM STATES TO FEDERAL GOVERNEMENT=CDC
MMWR PUBLISHES COUNTS WEEKLY
AIDS AND NOT HIV INITIALLY MANDATORILY REPORTED TO CDC
HIV DATA WEAK BECAUSE OF HIV NOT REPORTED IN EARLY YRS & ANONYMOUS TESTING =NO NAME REPORTING
The HIV Test: The HIV Test 1985: BLOOD TEST FOR HIV DEVELOPED
SENSE OF URGENCY TO SCREEN BLOOD SUPPLY: TESTING ALL BLOOD DONORS
DEBATE SHIFTED TO IDENTIFICATION OF HIV INFECTED NOT YET SICK WITH AIDS
SOME STATES REQUIRED REPORTING HIV POSITIVE TESTS BY NAME AS WITH OTHER DISEASES SUCH AS
Colorado passed the first HIV reporting law
NO STATE W/ LARGE 3S OF AIDS CASES REQUIRED NAMED HIV REPORTING
ONLY REASON TO TEST AND REPORT WOULD BE TO TRACK AND TREAT BUT THERE WAS NO TREATMENT
INITIAL FEARS: INITIAL FEARS QUESTIONS RAISED ABOUT SPREAD TO OTHERS
Pressure to fire gay waiters and hair dressers
Claims of housing discrimination against persons with AIDS
These claims were difficult to substantiate
CIVIL LIBERTARIANS AND GAY RIGHTS ADVOCATES PUSHED TO KEEP DIAGNOSIS SECRET
Anonymous Testing: Anonymous Testing ONLY FOR HIV
HEALTH DEPARTMENTS ALWAYS HAD FEW PEOPLE GIVE FALSE NAMES IN STD CLINICS SYPHILIS CONTACT TRACING IN NYC ALWAYS HIGHLY SUCCESSFUL
ANONYMOUS TESTING BLOCKED ABILITY TO TRACK EPIDEMIC OR CONTACT TRACE
GAY RIGHTS GROUPS LOBBIED CONGRESS TO REQUIRE ANONYMOUS TESTING SITES AS CONDITION OF FEDERAL
STATES W/ NAMED REPORTING HAD TO ALSO ALLOW ANONYMOUS TESTING
ACTG 076 CHANGES EVERYTHING: ACTG 076 CHANGES EVERYTHING AZT STARTING AT 14-34 WEEKS GESTATION
AZT INTRAVENOUSLY DURING LABOR & DELIVERY
AZT ORALLY TO BABIES FIRST 6 WEEKS
ALL 3 TOGETHER DECREASED TRANSMISSION BY TWO THIRDS
RESULTS PUBLISHED IN NEJM 1994
POST 076 ERA:BABY AIDS LAW: POST 076 ERA:BABY AIDS LAW 1996 PATAKI SIGNS LAW MANDATING NEWBORN SCREENING FOR HIV
PRENATAL TESTING IS NOT MANDATORY IN NYS BUT IS IN 8 OTHER STATES
1999: IOM RECOMMENDED UNIVERSAL HIV TESTING OF PREGNANT WOMEN AS ROUTINE PART OF PRENATAL CARE
RATES OF PRENATAL HIV SCREENING SIGNIFICANTLY HIGHER WHERE ROUTINIZED (OPT OUT)
VAST MAJORITY OF HIV TESTING IN NYC=PRENATAL SCREENING=SIMPLIFIED COUNSELING
Change in MTCT Over a Decade in the U.S.: Effectiveness of Implementing Clinical Trial Results: Change in MTCT Over a Decade in the U.S.: Effectiveness of Implementing Clinical Trial Results 1993: 1994: 1997: 1999: 2001: 2002: 2003:
WITS PACTG PACTG WITS PACTG PACTG WITS
076 185 247 316 % Transmission AZT
Era Combination
ARV Era
MMWR JUNE 27, 2003: MMWR JUNE 27, 2003 Compared with 1,573 early testers, 1,877 late testers significantly more likely to be younger (aged 18--29 years), to be black or Hispanic, to have been exposed to HIV through heterosexual contact, to have a high school or less education
Majority of late testers received HIV testing because of illness (65%), and the majority of early testers were tested because of self-perceived risk (29%) or because they wanted to know their HIV status (19%)
87% of late testers had first positive HIV test at an acute or referral medical care setting
Death Rates from AIDS By Gender and Race/Ethnicity, NYC, 2004: Death Rates from AIDS By Gender and Race/Ethnicity, NYC, 2004 Data from DOHMH Vital Statistics; age-adjusted 6x higher 9x higher
Increasing Proportion of NYC’s AIDS Cases Result from Heterosexual Transmission to Women 15-Fold Increase from 1981 to 2003: Increasing Proportion of NYC’s AIDS Cases Result from Heterosexual Transmission to Women 15-Fold Increase from 1981 to 2003 Among all cases with a known and reported transmission risk factor, 1981-2003.
CASE 1: 33 YEAR OLD AFRICAN AMERICAN WOMAN WITH NO RISK FACTORS: CASE 1: 33 YEAR OLD AFRICAN AMERICAN WOMAN WITH NO RISK FACTORS 33 YEAR OLD AA WOMAN W/HX ASTHMA PRESENTED TO THE CUMC ER WITH 2 WEEKS SOB & COUGH; TREATED FOR ASTHMA 1 WK EARLIER AND SENT HOME; SOB WORSENED
FOLLOWED REGULARLY IN HOSPITAL BASED MEDICAL CLINIC
SOCIAL HX-NO CIGS; NO ETOH; NO DRUGS EVER; LIVES W/12 YEAR OLD SON; WORKS IN DEPARTMENT STORE AS CLERK
CASE 1 CONTINUED: CASE 1 CONTINUED PE: WDWN BP140/90; P 110; T101.1 RR24 O2 SAT 90%
ORAL THRUSH; CLEAR LUNGS
CXR SHOWS DIFFUSE INTERSTITIAL INFILTRATE
ADMIT TO MEDICINE; PRESUMPTIVE DX PCP; RX IV TMP-SX &PREDNISONE
RESPIRATORY STATUS WORSENS
INTUBATED TO MICU X 5 DAYS; CD4=11
Late Diagnosis of HIV Increases Risk of Death from AIDS by Two Thirds: Late Diagnosis of HIV Increases Risk of Death from AIDS by Two Thirds DOHMH HIV Surveillance & Epidemiology, 2005
Today in NYC…: Today in NYC… 12 people will be diagnosed with AIDS
10 will be black or Hispanic
3 will be women
3 people will first learn they are HIV-positive when they are already sick from AIDS
4 people will die from AIDS
3 will be black or Hispanic
Large Disparities in HIV Rates in NYC: Large Disparities in HIV Rates in NYC Note: Data include estimates of undiagnosed cases, rounded to nearest 0.5%
Case 2: 44 Y/O AFRICAN AMERICAN MAN W/NO SIGNIFICANT MEDICAL HX: Case 2: 44 Y/O AFRICAN AMERICAN MAN W/NO SIGNIFICANT MEDICAL HX
IN USUAL STATE OF GOOD HEALTH; AM OF ADMISSION SEVERE EPIGASTRIC PAIN S N, V D; NO HX GB DISEASE ; NO FEVERS, CHILLS
TO ER 2 WKS PTA W/ SOB & DRY COUGH: NEG CXR, NEG V/Q SCAN; D/C HOME
BP 118/76, P 116, T 97.4 RR 18. O2 sat 96% RA
PE: LUQ & EPIGAST TENDERNESS; VOL GUARDING; ADM MEDICINE: PRESUMPTIVE DX PANCREATITIS
PAST MEDICAL/SURGICAL HISTORY: SUBLUXATION OF R CLAVICLE 3 YEARS AGO RXED IN ER OF NYC HOSPITAL
SOCIAL HX: LIVES ALONE & WORKS IN FACTORY
ETOH 4-5 BEERS/d X 10 YEARS LAST DRINK 10d AGO; NO HX CIGS, CRACK, COCAINE OR IVDU; +UNPROTECTED SEX W/MULTIPLE PARTNERS
CASE 2 Continued: CASE 2 Continued ADMISSION LABS: H&H 14.3/42.6, WBC 4.5, PLT 264,000. LFTs WNL; AMY 492, LIPASE 1530
CXR: SLIGHTLY INCREASED DENSITY DIFFUSELY
ABDOMINAL CT: PERIPANCREATIC FLUID. NO PSEUDOCYST
CHEST CT: BILATERAL CENTRAL GROUND GLASS OPACITIES C/W PCP &/OR NON-CARDIOGENIC PULMONARY EDEMA
PHYSICAL EXAMINATION: VS: BP 124/76, T 97.5, P 92 and RR 20. O2 sat 91% ON RA;
DESATURATION TO 68-71% WITH MINIMAL WALKING
HIV COUNSELED AND TESTED; CD4 22
IN 2006 HIV SHOULD NOT = AIDS: IN 2006 HIV SHOULD NOT = AIDS 1,038 New Yorkers – nearly 3 people every day – first learned they had HIV when they were already sick with AIDS
These people were infected on average for 10 years, often with multiple contacts with the health care and social services systems.
MANY MISSED OPPORTUNITIES TO BE TESTED
IT’S ALL THE FAULT OF THE LAZY DOCS WHO DON’T WANT TO BE BOTHERED COUNSELING: IT’S ALL THE FAULT OF THE LAZY DOCS WHO DON’T WANT TO BE BOTHERED COUNSELING EUROPEAN ARGUMENT: TESTING WITHOUT EXTENSIVE COUNSELING= EXCUSE FOR MD NOT TO SPEND TIME NEEDED TO EXPLAIN COMPLICATED ISSUE
HIV COUNSELING REQUIRES 20-30 MINUTES IF DONE PROPERLY
PHYSICIANS ACTUALLY DO NOT WISH TO BREAK THE LAW AND DO COUNSELING IN 3 MINUTES
DO NOT BLAME THE PHYSICIAN: DO NOT BLAME THE PHYSICIAN US HEALTH CARE SYSTEM IS BROKEN: NO REIMBURSEMENT FOR COUNSELING
15-20 MINUTES PER PATIENT IN CLINIC SETTING
BUSY CLINICIANS IN URBAN MEDICAL CLINICS TRYING TO ADDRESS ALL “MEDICAL” ILLNESSES:
FOCUS ON CHRONIC DISEASES: DIABETES, ASTHMA, HTN
BUT HIV IS A CHRONIC DISEASE
WHY NOT USE RISK ASSESSMENT?: WHY NOT USE RISK ASSESSMENT? MULTIPLE STUDIES SHOW RISK ASSESSMENT DOES NOT WORK
MANY PATIENTS DO NOT PERCEIVE THEMSELVES TO BE “AT RISK”:
HETEROSEXUAL & MONOGAMOUS ALWAYS
HETEROSEXUAL & MONOGAMOUS FOR>10 YEARS
MANY PHYSICANS DO NOT PERCEIVE THEIR PATIENTS TO BE AT RISK
MANY PHYSICIANS CONTINUE TO STIGMATIZE HIV: THEY DO NOT WANT TO THINK OF THEIR PATIENTS AS AT RISK ie DOING “BAD” THINGS
HIV-Related Stigma: HIV-Related Stigma The stigma of an HIV diagnosis can be devastating – and is an important barrier to testing and treatment
The alternative – not getting care, spreading infection to others, and dying prematurely of AIDS – is even worse
Societal change will be required to successfully address stigma
25 years of struggling has not fixed society
WE CANNOT WAIT FOR BROAD SOCIAL CHANGES WHEN LIVES CAN BE SAVED NOW: WE CANNOT WAIT FOR BROAD SOCIAL CHANGES WHEN LIVES CAN BE SAVED NOW WE NEED NAT’L HEALTH INSURANCE, BETTER PRIMARY CARE
WE NEED A NON-RACIST & NON-HOMOPHOBIC SOCIETY
BUT: AIDS EXCEPTIONALISM MAINTAINS THE STIGMA
FOCUSES ATTENTION ON THOSE ALLEGEDLY “AT RISK” RATHER THAN ON THE COMMUNITY AT LARGE
COMMUNITY BASED ORGANIZATIONS: COMMUNITY BASED ORGANIZATIONS SENSITIVE TO NEEDS AND FEARS OF “THEIR COMMUNITY”
FUNDED TO PROVIDE COUNSELING AND TESTING; PROVIDE OTHER SERVICES TO PLWAS
HAS THEIR MAIN FOCUS BECOME KEEPING FUNDED?
IS THEIR NEED FOR EMPLOYMENT BLOCKING EARLY DIAGNOSIS & LIFE SAVING INTERVENTIONS IN THE VERY COMMUNITIES THEY SERVE?
IS THERE A PRECEDENT? POLIO: IS THERE A PRECEDENT? POLIO The National Foundation for Infantile Paralysis
Established 1938
Grew out of huge success of Birthday Balls for President Franklin Roosevelt.
Balls & the foundation both Roosevelt’s ideas
NAME CHANGE: MARCH OF DIMES: NAME CHANGE: MARCH OF DIMES The organization’s name came from comedian Eddie Cantor’s comment that the donation of dimes from across the country could become a “march of dimes,” a reference to the popular March of Time newsreels of the era.
AN EARLY CBO: AN EARLY CBO The March of Dimes was a grassroots campaign run primarily by volunteers
Over the years, millions of people gave small amounts of money to support both the care of treatment of people who got polio and research into prevention and treatment
The advent of the polio vaccine was NOT a cause for them to try to block its use
REINVENTION & REFOCUS: REINVENTION & REFOCUS
GOAL OF MARCH OF DIMES: GOAL OF MARCH OF DIMES TO PREVENT BIRTH DEFECTS & INFANT MORTALITY THROUGH
EDUCATION, RESEARCH, COMMUNITY PROGRAMS, ADVOCACY
DURING ITS 32-YEAR HISTORY, WALKAMERICA HAS RAISED MORE THAN $1 BILLION
Death Rates from AIDS By Gender and Race/Ethnicity, NYC, 2004: Death Rates from AIDS By Gender and Race/Ethnicity, NYC, 2004 Data from DOHMH Vital Statistics; age-adjusted 6x higher 9x higher
CASE 3: 74 YEAR OLD DOMINICAN MAN W/ HX HYPERTENSION: CASE 3: 74 YEAR OLD DOMINICAN MAN W/ HX HYPERTENSION
ADMITTED 9/18/06 W/ L FLANK PAIN & FEVERS
ADMISSION PE: T104; ABD PELVIC CT: NONOBSTRUCTING RENAL STONES
URINE CX + COAG NEG STAPH
PT RECEIVED ZOSYN & AUGMENTIN W/RESOLUTION OF FEVERS
PT C/O SOB: TTE SHOWED GLOBAL HYPOKINESIS W/ EF 25-30% & RV ANTERIOR WALL MASS 6x4cm, C/W TUMOR
PET SCAN 10/3: MASS IN R HEART INVOLVING RA, RV, SEPTUM, PERICARDIUM; CERVICAL, AXILLARY, MEDIASTINAL & PLEURAL INVOLVEMENT C/W METASTATIC DISEASE;
CASE 3 CONTINUED: CASE 3 CONTINUED BX REVEALS NON-HODGKINS B CELL LYMPHOMA
HIV TEST POSITIVE; CD4 90;
10/31/06: 71 YEAR OLD WIFE TESTED HIV POSITIVE W/ CD4 131
11/5/06: PATIENT DIES
HIV Testing – Then and Now: HIV Testing – Then and Now 1985 2006 RISK RISK BENEFIT BENEFIT Risks and benefits not clear;
benefits slightly outweigh risks Benefits clearly
outweigh risks ?
IN 2006 NO ONE IN THE US SHOULD ENTER A HOSPITAL LIKE THIS: IN 2006 NO ONE IN THE US SHOULD ENTER A HOSPITAL LIKE THIS