Transcript: A History of the AIDS Movement | Dec 01, 2016

Steve sits in the studio. He's slim, clean-shaven, in his fifties, with short curly brown hair. He's wearing a gray suit, pale peach shirt, and spotted blue tie.

A caption on screen reads "The fight against AIDS. @spaikin, @theagenda"

Steve says IT MAY BE HARD FOR OUR
YOUNGER VIEWERS TO APPRECIATE
THE FEAR, EVEN HYSTERIA, OF THE
EARLY DAYS OF THE AIDS EPIDEMIC.
AND THIRTY PLUS YEARS ON, MANY
STILL DON'T FULLY UNDERSTAND THE
EFFORT MADE BY PEOPLE AND
MOVEMENTS AROUND THE WORLD TO
SAVE LIVES AND GET ACTION ON THE
DISEASE, THEN, AND RIGHT UP TO TODAY.
FORTUNATELY, DAVID FRANCE LAYS
OUT THAT HISTORY IN HIS NEW BOOK
"HOW TO SURVIVE A PLAGUE: THE
INSIDE STORY OF HOW CITIZENS AND
SCIENCE TAMED AIDS," AND HE
JOINS US NOW FOR MORE.

A picture of the book appears briefly on screen. The cover is pink and features a rising fist made of pills.
David is in his late forties, with receding gray hair and a goatee. He's wearing round orange glasses, a gray plaid suit, a pink shirt, and a button with a picture on it.

Steve continues IT'S GREAT TO MEET YOU AND NICE
TO HAVE YOU HERE.

David says IT'S WONDERFUL TO BE HERE. THANK YOU.

Steve says AS I SUGGESTED IN
THE INTRO, I THINK YOU HAVE TO
BE SORT OF 55-PLUS TO REMEMBER
WHAT IT WAS LIKE 30-PLUS YEARS
AGO WHEN THIS STORY BROKE.
OBVIOUSLY I COVERED IT HERE IN
TORONTO, BUT YOU WERE AT GROUND
ZERO IN NEW YORK CITY.
LET'S START THERE.
SET THE SCENE FOR US OF WHAT
LIFE WAS LIKE IN THE EARLY
'80s IN NEW YORK CITY WHEN
THIS THING BROKE.

The caption changes to "David France. Author, 'How to survive a plague.'"
Then, it changes again to "Before the plague."

David says WELL, THE
FIRST THING YOU'D HAVE TO KNOW
OR REMEMBER IF YOU'RE IN OUR
GENERATION IS THAT GAY PEOPLE,
LESBIANS, GAYS, AND TRANSGENDER
POPULATION, WERE REALLY EXCLUDED
FROM THE LARGER CULTURE.
THERE WERE NO PROTECTIONS IN
PLACE.
IN THE UNITED STATES, IT WAS
ILLEGAL TO BE GAY IN 23 STATES
IN 1981, WHEN THE FIRST REPORTS
OF THE PLAGUE HIT, AND IT WAS
ILLEGAL FOR PEOPLE TO ENTER THE
UNITED STATES, EVEN AS TOURISTS
IF THEY WERE GAY PEOPLE.
SO WE WERE IN KIND OF A
PRE-HISTORY, AND THE
POPULATION... THE GAY COMMUNITY
WAS VERY ISOLATED AND KIND OF
INWARD-LOOKING WHEN THE VIRUS
HIT.
AND BECAUSE OF THAT, THERE WAS
VERY LITTLE COVERAGE OF WHAT WAS
OBVIOUSLY A MOUNTING PROBLEM.
THE FIRST REPORT IN THE UNITED
STATES OF THE AIDS PROBLEM
APPEARED IN THE NEW YORK TIMES
ON PAGE 23 OF THE MAIN SECTION,
AND THERE IT WAS A VERY SHORT
ARTICLE EXPLAINING THAT 41
HOMOSEXUALS HAD COME DOWN WITH A
RARE GAY-RELATED CANCER, THEY
WERE CALLING IT AT THE TIME
SO...
IT WAS CAST AS A PROBLEM THAT
WAS ONLY STRIKING A DESPISED
COMMUNITY AND THAT CREATED
REALLY THE WHOLE PETRI DISH IN
WHICH THIS ENTIRE EPIDEMIC GREW.

Steve says I RECALL SEEING IN
PARTICULAR EVANGELICAL CHRISTIAN
LEADERS INTERVIEWED AT THE TIME
SAYING THIS WAS GOD'S WRATH AND
REVENGE ON A PARTICULAR
COMMUNITY FOR BAD BEHAVIOUR.
WHEN YOU HEARD THAT, WHAT DID
THAT DO TO YOU?

David says WE KNEW WE
WERE ON THE OUTSIDE OF CULTURE
AND SOCIETY.
YOU KNOW, WE WERE OUTLAWS AND WE
DIDN'T EXPECT COMPASSION FROM
THE RELIGIOUS RIGHT CERTAINLY.
BUT IT WAS A TIME ALSO OF GREAT
GROWTH OF THE STRENGTH AND POWER
OF THE RELIGIOUS RIGHT.
THEY HAD HELPED SAIL RONALD
REAGAN INTO OFFICE IN 1980.
AND AT FIRST WE DIDN'T REALIZE
HOW POWERFUL THEY WERE GOING TO
BE ON THIS PUBLIC HEALTH CRISIS.

Steve says POWERFUL IN WHAT
RESPECT?

David says THEY HAD
CONTROL OF CONGRESS.
THEY HAD INFLUENCE IN CONGRESS
THAT WOULD MAKE IT MUCH MORE
ADVANTAGEOUS FOR PEOPLE IN
CONGRESS TO DO NOTHING ABOUT THE
AIDS EPIDEMIC THAN TO ACT ON IT.

Steve says SO WHERE YOU WERE
LOOKING FOR MONEY TO FLOW FOR
RESEARCH... SENATOR JESSIE
HELMS, FOR EXAMPLE, WERE
FILIBUSTERING.

David says WORSE THAN
THAT.
THEY WERE KILLING BILL THAT CAME
ALONG.
HE ATTACHED TO BILLS WITH AIDS
FUNDING, IT WAS CALLED THE HELMS
AMENDMENT FOR THE NEXT DECADE,
THAT NEUTERED AND NULLIFIED ANY
PIECE OF LEGISLATION THAT WAS
LOOKING AT RAISING MONEY FOR
AIDS RESEARCH OR H.I.V.
PREVENTION CAMPAIGNS, AND HE WAS
DOING IT IN THE NAME OF
MORALITY, AND IN THE NAME OF
MORALITY, CONDEMNING TO DEATH
TENS OF THOUSANDS OF PEOPLE.

Steve says YOU POINT OUT IT WAS
41 PATIENTS AT FIRST.
I MEAN, DO YOU RECALL AT WHAT
POINT PEOPLE STARTED TO REALIZE,
MY GOODNESS, THIS IS NOT
ACTUALLY 41 PEOPLE, THIS IS...
WELL, AS ONE OF YOUR ACTIVISTS
CALLED IT, LAURIE KRAMER CALLED
IT, THIS IS A PLAGUE, THIS IS BIG.
WHEN DID YOU REALIZE THAT?

The caption changes to "David France, @ByDavidFrance"
Then, it changes again to "Warning signs."

David says IT TOOK SOME TIME.
IT WAS IN '81, IT COULD HAVE
BEEN ANYTHING.
IT WAS NOT UNTIL 1983 THAT THE
VIRUS WAS ISOLATED, AND BECAUSE
OF THE STRANGE INTERNATIONAL
BATTLE OF GREED AND OPPORTUNISM,
IT TOOK ANOTHER 3 YEARS AFTER
THAT FOR AN H.I.V. ANTIBODY TEST
TO MAKE IT TO MARKET.
FIRST SIGNS OF THE EPIDEMIC IN
1985, 1986 WAS GUESSWORK ABOUT
WHAT WAS HAPPENING.
IT HAD PENETRATED SOCIETY,
MOSTLY URBAN COMMUNITIES, ALL
ACROSS EUROPE, BY THAT POINT,
NORTH AMERICA, CREEPING INTO
LATIN AMERICA, ASIA, AND THEN
ENDEMIC IN AFRICA.

Steve says I DO RECALL AT THE
TIME THEY WERE MAKING A LIST OF
THE PEOPLE WHO WERE MOST LIKELY
TO GET IT, AND IT WAS CERTAINLY
GAY MEN, INTRAVENOUS DRUG
ABUSERS, AND HAITIANS.
I MEAN, WHAT DID YOU MAKE OF THAT?

David says THEY WERE
CALLED... THERE WAS ANOTHER
GROUP... HEMOPHILIACS.
THEY CALLED US THE FOUR Hs,
HEROIN ADDICTS, HOMOSEXUALS...
WELL, THOSE WERE THE POPULATIONS
THAT WERE DYING INITIALLY.
IT TOOK MANY DECADES FOR THE
HAITIAN CONNECTION TO BEGIN TO
MAKE SENSE EPIDEMIOLOGICALLY,
AND IT SEEMS, WE KNOW NOW, THAT
WHEN THE VIRUS FIRST JUMPED FROM
AFRICA WHERE IT ORIGINATED, IT
LANDED FIRST IN HAITI, THAT HAD
TO DO WITH SOME SORT OF RELIEF
ACTIVITY, REFUGEE RELIEF
ACTIVITY THAT WAS TAKING PLACE
BETWEEN THOSE TWO REGIONS, AND
FROM THERE UP TO THE UNITED
STATES WITH GAY MEN ENGAGED IN A
KIND OF SEX TOURISM IN HAITI AND
THEN INTO THE BLOOD SUPPLY,
WHICH IS WHY HEMOPHILIACS BECAME
AT RISK FOR IT.
NOT ONLY ONE OF THOSE GROUPS
DESERVED ANY SORT OF SYMPATHY IN
THE WAY AMERICANS WERE THINKING
AT THE TIME, AND THAT WAS THE
HEMOPHILIACS, THE SO-CALLED
INNOCENT AIDS PATIENTS.

Steve says THERE WAS A CANADIAN
ANGLE BECAUSE THERE WAS A FRENCH
CANADIAN FLIGHT ATTENDANT WHO
WAS KNOWN AS PATIENT ZERO AND HE
WAS SORT OF VILIFIED AT THE TIME
FOR HAVING BROUGHT IT FROM
AFRICA, THE STORY GOES, TO NORTH
AMERICA, AND THEN THE EXPLOSION
AFTER THAT.
HOW DID THAT GET INTO THE LORE?

David says THAT VERY
FIRST YEAR OF THE BEGINNING OF
UNDERSTANDING WHAT WAS
HAPPENING, AND MANY OF THE
PEOPLE WHO WERE STILL ALIVE WHO
SEEMED TO HAVE THIS MYSTERY
ILLNESS WERE INTERVIEWED BY
RESEARCHERS AND DISEASE CONTROL
EXPERTS, AND GAETAN DUGAS' NAME
CAME UP.
MANY PEOPLE REMEMBERED HIM WHO
WERE OTHER AIDS PATIENTS AT
THE TIME FROM HAVING HAD
ROMANTIC RELATIONS WITH HIM.
SO HE BECAME KIND OF THIS
MYSTERY LINK TO A LOT OF PEOPLE.
AND AT SOME POINT, A HYPOTHESIS
DEVELOPED THAT HE WAS THE INDEX
PATIENT, THE FIRST PERSON WITH
H.I.V. WHO TRAVELLED, AND HE
HAPPENED TO BE A FLIGHT
ATTENDANT, THROUGH NORTH
AMERICA, TRAVELLED THROUGH PORTS
OF CALL.
IT MADE FOR A GREAT STORY AND IT
CERTAINLY, FOR PEOPLE WHO WANTED
TO FEAR HOW THIS DISEASE WAS
BEING RACKETED AROUND THE WORLD,
IT MADE A COMPELLING NARRATIVE.
IT TURNS OUT IT WAS NOT TRUE.
HE WAS, WE NOW KNOW, NOT RELATED
AT ALL TO THE INFECTIONS OF THE
OTHER PEOPLE IN THE COHORTS THEY
WERE STUDYING AT THE TIME.
RECENT STUDIES, THEY WENT BACK
AND LOOKED.
BUT HE BECAME THE DEVIL OF THE
EPIDEMIC AND THE PERSONIFICATION
OF WHAT WAS CONSIDERED AT THE
TIME KIND OF AN IRRESPONSIBILITY
AMONG THE SICK AND A WAY TO
CONTINUE TO BLAME THE
COMMUNITIES OF THE SICK FOR THE
ILLNESSES THAT THEY'RE SUFFERING.

Steve says THAT WENT ALL THE
WAY UP TO THE PRESIDENT.
I DO REMEMBER GEORGE BUSH, THE
FATHER, AT THE TIME SAYING THIS
IS A BEHAVIOUR-BASED DISEASE.
CHANGE YOUR BEHAVIOUR, AND THE
DISEASE GOES AWAY.
WHAT DID YOU THINK WHEN YOU
HEARD THAT?

David says WELL, HE WAS
ABOUT 10 YEARS BEHIND WHAT WAS
REALLY GOING ON IN THE
COMMUNITY.
BEFORE ANYBODY EVEN HYPOTHESIZED
IT WAS A VIRUS, THE GAY
COMMUNITY CAME UP WITH A PLAN
FOR CONTAINING THE EPIDEMIC,
PROMULGATED FROM THE
AUTHORITIES.
THEY CAME UP WITH SAFE SEX.
SAFE SEX IS A TERM WE THINK
EXISTED FOREVER.

Steve says IT DIDN'T.
IT CAME FROM THEM.

David says IT WAS
ACTUALLY INVENTED AND PUBLISHED
IN BOOKLETS AND PASSED AROUND SO
THAT PEOPLE COULD UNDERSTAND
WAYS TO THEORETICALLY PROTECT
THEMSELVES.
AND WHAT WE SEE AFTER THE ADVENT
OF SAFE SEX IN 1983, TWO YEARS
INTO THE EPIDEMIC, AND IT HAD
SIMULTANEOUS CREATIONS IN
TORONTO AND NEW YORK AND
SAN FRANCISCO AND LOS ANGELES,
THIS IDEA THAT CONDOM USAGE AND
AVOIDANCE OF EXCHANGE CERTAIN
BODILY FLUIDS MIGHT CONTAIN THE
SPREAD OF THE DISEASE.
WE SEE THE INDICES OF ALL SORTS
OF OTHER DISEASES DROPPING OFF
REMARKABLY, GONORRHEA COLLAPSES
IN THE COMMUNITY, SYPHILIS
COLLAPSES IN THE COMMUNITY.
WE KNOW THAT SAFE SEX WAS TAKEN
UP ON A REALLY LARGE SCALE
BEHAVIOURAL CHANGE TOOK PLACE
WITHIN THE COMMUNITY.
SO GEORGE BUSH YEARS LATER SAYS BEHAVIOUR IS THE PROBLEM.
WHAT OUR PROBLEM WAS AT THE TIME
WAS THAT, BY THE TIME THE
COMMUNITY ADOPTED BEHAVIOURAL
CHANGES, SOME 50 percent OF ALL GAY MEN
IN MAJOR CITIES IN NORTH AMERICA
WERE ALREADY DOOMED, AND WHAT
THE ACTIVISTS AND PATIENTS AND
THEIR ADVOCATES WERE CALLING FOR
WAS FUNDING FOR MEDICATION FOR
THE SICK, AND THERE'S NO WAY
THAT A BEHAVIOURAL CHANGE CAN
CHANGE THAT EXCEPT THE
BEHAVIOURAL CHANGE OF PEOPLE
LIKE GEORGE HERBERT WALKER BUSH
AND THE PEOPLE IN THE CORRIDORS
OF SCIENCE WHO WERE NOT DOING
THAT WORK ON AN URGENT BASIS.

Steve says I HERE YOU, DAVID,
BUT HUMOUR ME FOR A SECOND ON
THIS ONE.
YOU'RE RIGHT, BY THE TIME HE
SAID THAT, THE HORSE HAS LEFT
THE BARN.
LET'S PUT THIS IN ITS PROPER
PERSPECTIVE AT THE TIME.
AIDS BLASTS ONTO THE SCENE
SORT OF AT THE DAWN, I THINK, OR
MAYBE NOT TOO FAR AFTER THE
DAWNING OF THE SEXUAL
REVOLUTION, PARTICULARLY IN THE
GAY COMMUNITY, WHERE PEOPLE ARE
REALLY, YOU KNOW, FEELING THEIR
OATS AND PEOPLE ARE COMING OUT
OF THE CLOSET.
AND IT'S FAIR TO SAY THERE WERE
FAR TOO MANY PEOPLE HAVING
UNSAFE SEX IN THE GAY COMMUNITY
AT THE TIME; RIGHT?
THAT'S OKAY TO SAY, ISN'T IT?

David says IT DEPENDS
WHAT TIME YOU'RE TALKING ABOUT.
THE SEXUAL REVOLUTION COMES TO
US FROM THE '60s.

Steve says MAYBE NOT IN
TORONTO.

David says THE SUMMER OF
LOVE, RIGHT, 1968.
AND THEREAFTER, 1969, THE
BEGINNING OF THE MODERN GAY
MOVEMENT WITH THE UPRISING AT
THE STONEWALL BAR IN NEW YORK,
AND THROUGH THE '70s, THERE
WAS A SEXUAL CELEBRATION AND,
SOME WOULD SAY, HEDONISM IN THE
COMMUNITY, LINKED WITH THE
MOVEMENT, A CELEBRATION THAT HAD
NEVER BEEN EXPRESSED OR
EMBRACED, AND AT THE TAIL END OF
THAT COMES THE VIRUS.

Steve says AND IT HAPPENED IN
THIS COMMUNITY, WE HAD THE RAIDS
ON THE GAY BATHHOUSES WHICH WAS
QUITE A BIG DEAL AT THE TIME.

The caption changes to "Mobilizing a movement."

David says RIGHT.
WHILE THE MOVEMENT IS TRYING TO
CHANGE THE LAWS THAT WERE SO
DISCRIMINATORY AGAINST GAY
PEOPLE, THEY WERE ACTING IN
THEIR SEXUAL COMMUNITIES IN WAYS
THAT EMULATED A KIND OF A
FREEDOM, AND IT'S IN THAT WORLD
THAT THIS VIRUS MYSTERIOUSLY
LANDED.
NOW, I DON'T BELIEVE IN ANY
SIGNIFICANT WAY THAT ONCE THE
EPIDEMIC HIT AND WAS RECOGNIZED
AS BEING A PROBLEM THAT THE
COMMUNITY DIDN'T MAINTAIN ITS
VIGILANCE, AND I THINK WE SEE
THAT THROUGH ALL THE DATA ON
SEXUAL BEHAVIOUR IN THE
COMMUNITY.
AS LONG AS THE INFORMATION WERE
PROMULGATED AND IT WAS RECEIVED
AND THE BATTLE FOR THE COMMUNITY
AND THE MOVEMENT, AND WE SEE
THAT IN THIS BOOK, IS HOW TO GET
THAT INFORMATION OUT THERE, HOW
TO REACH THE GAY MEN WHO ARE
MOST AT RISK.
REMEMBER, THIS WAS BEFORE SOCIAL
MEDIA.
THIS WAS BEFORE FAX MACHINES.
THIS WAS BEFORE COMPUTERS OR THE
INTERNET.
AND SLIGHTLY AFTER SMOKE
SIGNALS.
WHAT WE HAD WAS A CAMPAIGN TO
PUT POSTERS UP EVERYWHERE AND TO
FIND WHERE GAY PEOPLE AT RISK
LIVED AND INTRAVENOUS DRUG USERS
AT RISK LIVED AND TRY AND
PHYSICALLY REACH THEM THERE.

Steve says THAT WAS PART OF THE
CAMPAIGN.
I GUESS THE OTHER PART WAS TO
TRY TO GET, IN YOUR COUNTRY,
CONGRESS TO FLOW MONEY TO THE
NATIONAL INSTITUTES OF HEALTH SO
THEY COULD FIND A CURE.

David says RIGHT.

Steve says TO THAT END, TELL US
ABOUT ACT UP.
WHAT WAS THAT AND WHAT ROLE DID
IT PLAY?

The caption changes to "ACT UP."

David says SO ACT UP IS
A KIND OF A NEWCOMER TO THE
POLITICAL MOVEMENT OF ACTIVISM
THAT STARTED RIGHT AT THE
BEGINNING, AND IT'S A SLIGHTLY
YOUNGER GENERATION, MAYBE A HALF
GENERATION YOUNGER THAN THE
ACTIVISTS THAT TOOK TO THE
GROUND IN '81.
IT'S 1987, SIX YEARS INTO THE
EPIDEMIC, 500,000 PEOPLE WORLD
WIDE ALREADY DEAD.
THE PRESIDENT HAS JUST SAID THE
WORD AIDS FOR THE FIRST
TIME, AND HE DESCRIBED IT NOT AS
A SCIENTIFIC PROBLEM BUT A MORAL
PROBLEM.

Steve says THIS IS REAGAN.

David says THIS IS
RONALD REAGAN.
WE, AS A COMMUNITY AND AS A
MOVEMENT, HAD NO TRACTION SEVEN
YEARS IN AND NO PILL.
HE SAID THEY WERE LOOKING FOR A
CURE.
THEY WERE LOOKING FOR A
TREATMENT.
ANYTHING.
AND NOTHING HAD BEEN RELEASED.
THINK OF IT.
SIX YEARS OF SITTING AND WAITING
FOR PHARMACEUTICAL COMPANIES,
ANYBODY, TO AT LEAST TRY
SOMETHING.
AND THE FRUSTRATION WAS
UNDERSTANDABLE AND PROFOUND.
AND IN EARLY 1987, A GROUP OF
PEOPLE GOT TOGETHER IN NEW YORK
TO EXPRESS THEIR FURY AND THEY
FORMED THE NUCLEUS OF WHAT WOULD
BECOME THIS INTERNATIONAL GRASS
ROOTS SOCIAL JUSTICE MOVEMENT
AROUND HEALTH CARE CALLED ACT UP.

Steve says THE ANSWER TO THIS
MAY BE OBVIOUS BUT LET'S HIT IT
ON THE HEAD ANYWAY.
WHY DO YOU THINK GOVERNMENTS,
PUBLIC HEALTH ORGANIZATIONS,
MEDIA IN SOME CASES, WHY WAS
NOBODY PARTICULARLY SEIZED OF
FINDING A SOLUTION TO THIS PROBLEM?

David says BECAUSE
MORALITY WAS LEADING THE DAY.
IT WAS A TIME WHERE IDEOLOGY
ENCOURAGED THE PEOPLE THAT
MATTERED IN THOSE CATEGORIES
THAT YOU MENTIONED TO NOT HAVE
AN OUNCE OF EMPATHY FOR THE
COMMUNITY.
IT'S HARD TO REMEMBER THAT
TODAY.
IT REALLY IS HARD TO REMEMBER
EXCEPT MAYBE FOR WHAT'S
HAPPENING NOW IN WASHINGTON IN
PREPARATION FOR THIS NEW
ADMINISTRATION.
BUT THE FIRST THING THAT ACT UP
DID, AND HAD TO DO, WAS TO MAKE
AN ARGUMENT IN AN EFFECTIVE WAY
THAT PEOPLE WITH AIDS WERE
HUMAN AND NOT MONSTERS AND THEY
DESERVED WHAT HUMANS DESERVED.
STILL BY 1987 IN NEW YORK THERE
WAS ONLY ONE FUNERAL PARLOUR
THAT WOULD TAKE BODIES THAT HAD
DIED OF AIDS
THERE WERE DOCTORS WHO RIGHT UP
UNTIL 1990, THE MAJORITY OF
DOCTORS SURVEYED THROUGH NORTH
AMERICA WOULD NOT TREAT A PERSON
WITH AIDS IF GIVEN THE
OPPORTUNITY.
THERE WAS STILL THIS IDEA THAT
YOU BROUGHT IT UPON YOURSELF.
IT'S ALL JUST TOO MUCH FOR ME.
IT'S GOING TO BURN OUT THROUGH
YOUR COMMUNITY AND THEN, YOU
KNOW, THEN IT'LL BE OVER.
THAT'S WHAT THEY STARTED DOING
INITIALLY, THEY STARTED DOING IT
BY ADOPTING INTERESTING
STRATEGIES.
THERE WAS ONE THEY CALLED THE
KISS-IN.
AND I DESCRIBE THIS IN THE BOOK.
THEY WOULD JUST KIND OF GO TO
THE FRONT OF A BUILDING OR A
HOSPITAL OR INSIDE AN ELECTED
OFFICIAL'S OFFICE AND JUST KISS,
TO MAKE PEOPLE WITNESS A GAY
KISS.
1987, THERE STILL HAD NEVER BEEN
A GAY KISS ON TELEVISION.
WE HAD BEEN EXCLUDED, LIKE
ACTUALLY BARRIERS AGAINST THE
REFLECTION OF OUR HUMANITY.
AND SO IT STARTED BREAKING DOWN
AND MAKING PEOPLE FAMILIAR AT
LEAST WITH GAY PEOPLE, MAKING
PEOPLE LOOK AT GAY PEOPLE.
AND THEN FROM THERE, TO LISTEN
TO GAY PEOPLE.
AND THE GAY DEMAND AT THE TIME
WAS: GIVE US A PILL.
GIVE US A PILL.
AND SOON A PILL CAME AND IT WAS
HIGHLY TOXIC...

Steve says WHICH WAS THAT...

David says AZT.

Steve says AZT, AS YOU CALL IT.

David says YES.
AND THAT PILL WASN'T ENOUGH.
SO THEY SAID GIVE US ANOTHER
PILL.
AND THERE WAS NO OTHER PILL.
NO ONE HAD AN IDEA FOR ANY OF
THOSE OTHER PILLS.
AND THAT BEGAN THE DEVELOPMENT
OF THIS INTENSIFIED STRATEGY OF
THE TREATMENT ACTIVISTS ON THE
GROUND TO LEARN THE SCIENCE
THEMSELVES, TO BECOME CITIZEN
SCIENTISTS, TO MAKE THEMSELVES
AVAILABLE AS PARTNERS, SOMETIMES
UNWILLING PARTNERS, WITH THE
RESEARCH SCIENTISTS AND THE
REGULATORS WHO WERE IDENTIFYING
THOSE NEW COMPOUNDS, TESTING
THEM, AND BRINGING THEM ONTO THE
MARKET.

Steve says AND IN EFFECT, I
GUESS, AS THE STORY IS TOLD IN
THE BOOK, IT'S NOT BIG PHARMA
THAT LEADS THE WAY, IT'S NOT THE
POLITICIAN WHO LEAD THE WAY, IT
IS THE MEMBERS OF THE GAY
COMMUNITY WHOSE FRIENDS AND
LOVERS ARE DYING AROUND THEM AND
WHO THEY THEMSELVES ARE DYING,
WHO LEAD THIS PUSH.
WHAT WAS THE BREAKTHROUGH, EVENTUALLY?

The caption changes to "No longer a death sentence."

David says WELL,
EVENTUALLY IT WAS THAT... WHAT
ACT UP DID INITIALLY WAS TO
RECOGNIZE THAT THERE WAS NO
NATIONAL OR INTERNATIONAL AGENDA
FOR AIDS RESEARCH AND THERE
WAS NO LEADERSHIP IN PLACE.
SO THEY FIRST TRIED TO APPEAL TO
PEOPLE TO TAKE ON THOSE
LEADERSHIP ROLES AND TO BUILD
THAT AGENDA, AND WHEN THAT
FAILED, THEY DID IT THEMSELVES,
AND THEY BROUGHT THAT AGENDA TO
MONTRéAL TO THE INTERNATIONAL
AIDS CONFERENCE, WHEN IT
TOOK PLACE THERE, AND PRESENTED
IT KIND OF GUERRILLA STYLE TO
THE SCIENTISTS THERE.
THE SCIENTISTS STAYED MILES AWAY
FROM THESE FOLKS, THEY LOOKED
LIKE BOHEMIAN GAY FOLKS FROM NEW
YORK, THEY ALL WORE EARRINGS AND
LONG HAIR AND THERE WAS A
CERTAIN LOOK THAT WAS PREVALENT
AT THE TIME OF KIND OF ARMY
BOOTS AND T-SHIRTS AND THEY
LOOKED VERY ANATHEMA TO WHAT
THESE SCIENTISTS WERE EXPECTING.
BUT THE DOCUMENT THAT THEY
PRODUCED AND PRESENTED THERE
MADE A COGENT ARGUMENT AND BEGAN
TO INTEREST THE RESEARCHERS, AND
ONE IN PARTICULAR READ THIS
DOCUMENT.
SHE WAS A MEDICAL STATISTICIAN.
SHE WAS IN CHARGE OF APPROVING
THE WAYS THAT DRUGS WERE BEING
STUDIED AND SHE READ IT AND SHE
THOUGHT... AT FIRST SHE THOUGHT,
WELL, THEY HAVE NO IDEA HOW DRUG
TRIALS ARE DEVELOPED.
AND THEN SHE REALIZED THAT THEY
DID AND THAT IN FACT WHAT THEY
WERE PROPOSING WAS A WAY TO
STUDY DRUGS THAT WAS MORE MORAL,
THAT WAS MORE NIMBLE, THAT WAS
MORE URGENT, AND THAT COULD
PRODUCE NUMBERS IN A QUICKER WAY.

Steve says WHAT WAS IT ABOUT
THE AIDS VIRUS THAT MADE IT
SO PARTICULARLY VIRULENT AND
THEREFORE DIFFICULT TO CONQUER?

David says IT WAS THE
FIRST OF THE RETRO VIRUSES, AS
THEY'RE KNOWN, A CERTAIN CLASS
OF VIRUSES, TO BE IDENTIFIED TO
INFECT HUMAN BEINGS.
AT THE TIME IT WAS BELIEVED A
RETROVIRUS COULDN'T CAUSE
ILLNESS.
THIS RETROVIRUS IS A WILY LITTLE
THING.
IT GENETICALLY ALTERS THE HUMAN
GENOME.
IT KNITS ITSELF RIGHT INTO EVERY
GENE AND EVERY CELL OF THE
INFECTED HOST.
AND THEN IT JUST... IT EATS THE
IMMUNE SYSTEM UNTIL IT'S TOTALLY
DEPLETED.

Steve says LET'S BE CLEAR.
YOU DON'T ACTUALLY DIE OF
AIDS
AIDS DESTROYS YOUR ABILITY
TO FIGHT OFF INFECTION.

David says CORRECT.

Steve says AND YOU DIE OF
SOMETHING ELSE.

David says YOU DIE WHAT
THEY CALL OPPORTUNISTIC
INFECTIONS, THE INFECTIONS THAT
WOULD TAKE YOU AWAY IF YOU HAD
NO IMMUNE SYSTEM, AND THOSE
INCLUDED A RARE FORM OF
PNEUMONIA, A SKIN CANCER,
CERTAIN OCULAR INFECTIONS THAT
WOULD RENDER YOU BLIND BEFORE
KILLING YOU, AND THERE ARE 15 OR
20 OF THESE OPPORTUNISTIC
INFECTIONS THAT WEREN'T... WHILE
THE RESEARCH SCIENTISTS WERE
LOOKING FOR THE MAGIC BULLET AND
THE NOBEL PRIZE THAT MIGHT FIND
A WAY TO WRESTLE H.I.V. TO THE
GROUND, NOBODY WAS RESEARCHING
THE PILL THAT MIGHT KEEP YOU
FROM GETTING THE PNEUMONIA THAT
WAS KILLING THE MAJORITY OF
PEOPLE OR THE PILL THAT MIGHT
ALLOW YOU TO SAVE YOUR EYESIGHT.
AND THAT'S THE AREA WHERE THIS
GENERATION OF ACTIVISTS, OF
SCIENCE ACTIVISTS, FIRST PUT ALL
OF THEIR ATTENTION.
KEEP THE PEOPLE ALIVE FROM THE
OPPORTUNISTIC INFECTIONS WHILE
YOU'RE STILL RESEARCHING FOR
WHAT ULTIMATELY WOULD BE THE
PILL THAT MIGHT CHANGE THIS FROM
BEING A PLAGUE, OF ALMOST
CERTAIN DEATH, TO THE
POSSIBILITY OF SURVIVAL.

Steve says IT'S A TRIFECTA
COCKTAIL THAT WORKED.

David says IT WORKED.

Steve says IT WORKED.

David says AND THEY WERE
THERE, AS I SHOW IN THE BOOK, AT
EVERY STEP OF THE RESEARCH IN
THIS NEW DRUG COMPOUND THAT WAS
BROUGHT TO MARKET BASED ON A
DRUG TRIAL PROTOCOL THAT THEY
THEMSELVES DESIGNED, THE
ACTIVISTS DESIGNED, PRESENTED TO
INDUSTRY, AND INDUSTRY ADOPTED IT.
AND ALLOWED THIS DRUG TO PROVE
ITSELF IN A MUCH MORE RAPID
BASIS THAN ANY PREVIOUS DRUG OR
DRUG CLASS, AND THEN COME AND
WITHIN 6 MONTHS END THE PLAGUE
YEARS OF THIS EPIDEMIC IN A
REALLY, REALLY DRAMATIC WAY.

Steve says BUT HOW MANY PEOPLE
HAD TO DIE FIRST?
SIX MILLION, RIGHT?

David says CERTAINLY
RIGHT NOW IT'S 40 MILLION, BUT
AT THAT POINT 6 MILLION AND
THERE WERE 300,000 AMERICANS AND
BY THAT POINT 100,000 NEW
YORKERS AND THOSE NEW YORKERS
WERE ALL SEIZED FROM VERY SMALL
POCKETS OF THE CITY.
IF YOU KNEW ONE PERSON WHO DIED
IN THE PLAGUE YEARS, YOU KNEW A
DOZEN OR TWO DOZEN OR MORE.

Steve says THERE IS AN IRONY IN
ALL OF THIS, RIGHT?
I MEAN, THE IRONY THAT THE GAY
COMMUNITY INTERNATIONALLY REALLY
FOUND ITS VOICE AND ACQUIRED
POLITICAL POWER BECAUSE OF THIS
AWFUL PLAGUE.

David says IT'S TRUE.

Steve says WHO KNOWS IF IT
WOULD HAVE HAPPENED WITHOUT IT?

The caption changes to "tvo.org/theagenda"

David says I WAS LOOKING
AT AN OLD VIDEOTAPE OF AN
ELECTED OFFICIAL IN NEW YORK
ARGUING AGAINST MAKING ANY SORT
OF CONCESSIONS TO THE ACTIVISTS,
AND HE LEANED INTO A MICROPHONE
AND HE SAID, "NEXT THING,
THEY'RE GOING TO BE COMING TO
CITY HALL ASKING FOR A MARRIAGE LICENCE."

Steve says HE WAS RIGHT ABOUT THAT.

David says IT TURNS OUT
HE WAS RIGHT.
SO APOLOGIES TO HIM.
WE ALL SAID, NO, NO, THAT'S NOT IT.
IT TURNED OUT IT WAS A LOGICAL TRAJECTORY.

Steve says LET'S JUST SHARE
SOME OF THE CURRENT STATS ON
H.I.V. IN THE U.S. COURTESY OF
THE U.S. GOVERNMENT'S AIDS.GOV WEBSITE.

A slate appears on screen, with the title "H.I.V. in the United States."

Steve reads from the slate and says
1.2 MILLION IN THE U.S. ARE
LIVING WITH H.I.V. AND 1 IN 8
DON'T KNOW IT.
OVER THE NEXT DECADE, THE ANNUAL
NUMBER OF DIAGNOSES HAS DECLINED
19 percent.
GAY AND BISEXUAL MEN,
PARTICULARLY AFRICAN-AMERICAN,
ARE APPARENTLY TODAY MOST
AFFECTED.
HOW OPTIMISTIC ARE YOU NOW,
GIVEN THE TRAJECTORY OF THE LAST
35 YEARS, HOW OPTIMISTIC ARE YOU
THAT THIS THING SOME DAY WILL BE HISTORY?

The caption changes to "No cure in sight?"

David says I AM VERY
OPTIMISTIC, AND IT MIGHT NOT BE
IN THE SHORT TERM, GIVEN, IF
WE'RE TALKING, AT LEAST IN THE
UNITED STATES, GIVEN THE CHANGE
OF LEADERSHIP THERE.
IT TAKES EDUCATION.
THAT SAME KIND OF
EDUCATIONAL MONEY THAT JESSE
HELMS HELD FROM THE PUBLIC
COFFERS, WE HAVE NEW TOOLS IN
THE PREVENTION OF H.I.V.
TRANSMISSION, AND THEY ARE NOT
BEING PROMOTED.
WHAT WE KNOW WITH CERTITUDE IS
THAT PEOPLE WHO ARE ON EFFECTIVE
TREATMENT, PEOPLE WHO ARE
BROUGHT INTO CARE AND ARE ON
THESE MEDICATIONS EFFECTIVELY,
ARE VIRTUALLY NON-INFECTIOUS.
WE DON'T HAVE A CAMPAIGN IN THE
UNITED STATES TO GO OUT AND FIND
THOSE PEOPLE.
ONLY 1.2 MILLION, OR WHATEVER
NUMBER YOU SAID, SHOULD BE
LOCATEABLE.
BRING THEM INTO CARE AND YOU END
TRANSMISSION.
WE ALSO KNOW THAT THOSE SAME
MEDICINES TAKE IN, BY HEALTHY
PEOPLE, BY PEOPLE WHO DON'T HAVE
H.I.V. INFECTIONS, RENDER THEM
VIRTUALLY INCAPABLE OF BECOMING
INFECTED WITH H.I.V.
IT'S BEEN APPROVED... THE USE OF
THE DRUGS IN THIS WAY HAS BEEN
APPROVED AS A PROPHYLACTIC.
THEY DON'T WANT TO BE SEEN AS
PROMOTING A DRUG IN THAT WAY.
THE U.S. GOVERNMENT HAS NOT PUT
MONEY BEHIND A PUBLIC HEALTH
CAMPAIGN WHICH WOULD PROTECT
THOSE KIDS.
YOU'RE TALKING ABOUT KIDS WHO
ARE MOST AT RISK THESE DAYS.
THEY DON'T HAVE THE INFORMATION
TO EMPOWER THEMSELVES.
IF WE COULD REACH THEM AND PUT
THEM... FOR THE PERIOD OF
VULNERABILITY, SAY FROM THEIR
TEENS THROUGH THEIR 20s, ON
THIS MEDICATION AND WE CREATE A
KIND OF A PHARMACEUTICAL SHIELD
OVER THEM, THEY'RE NOT GOING TO
BE CATCHING H.I.V.
BUT THE AGES 14 TO 22, THAT'S
THE BIGGEST INFECTION RATE, GAY,
BISEXUAL, AND TRANSGENDER KIDS,
AND THEY ARE SPREADING IT AMONG
THEMSELVES.
SO THAT'S WHERE IT IS.
HOW DO YOU FIND THAT GROUP?
HOW DO YOU REACH OUT TO THAT
GROUP?
AND HOW DO YOU GIVE THEM
MESSAGES OF SELF-LOVE, SELF
EMPOWERMENT, AND SELF
PROTECTION.
AND THAT TAKES A GREAT AMOUNT OF
POLITICAL WILL THAT STILL WASN'T
BEEN GARNERED.

Steve says I WANT TO ASK YOU
ONE LAST QUESTION.
THE BUTTON.

David says THE BUTTON.

Steve says WHO IS THAT?

David says THIS IS
MARSHA P. JOHNSON.
SHE IS, OR WAS, THE FOUNDER OF
THE TRANSGENDER MOVEMENT BACK IN
THE 1960s.
A GREAT HERO.

A close-up to the button reveals a black and white picture of Marsha wearing a hat made of flowers.

Steve says WHY DO YOU WEAR HER BUTTON?

David says I THINK A LOT
ABOUT MARSHA.
MARSHA JOHNSON LAUNCHED THE
REBELLION AT STONEWALL AND WAS
ONE OF THE FOUNDERS OF THE
MODERN GAY MOVEMENT AND I'M
CURRENTLY WORKING ON A
DOCUMENTARY ABOUT HER LIFE.

Steve says PUT IT THIS WAY: IF
IT'S HALF AS GOOD AS THE
DOCUMENTARY YOU MADE ABOUT THIS,
I LOOK FORWARD TO SEEING THAT
ONE TOO, BECAUSE THIS BOOK AND
THAT DOCUMENTARY ARE BOTH
SPECTACULAR.

David says THANK YOU.

The caption changes to "Producer: Colin Ellis, @ColinEllis81"

Steve says "HOW TO SURVIVE A
PLAGUE: THE INSIDE STORY OF HOW
CITIZENS AND SCIENTISTS TAMED
AIDS"
DAVID FRANCE, THANKS FOR COMING
ON TVO.

David says THANKS,
STEVE, FOR HAVING ME.

Watch: A History of the AIDS Movement