And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (50 page)

Fortunately, William had recently signed on as a member of the medical advisory board of the Gay Men’s Health Crisis. He hoped the new group would be able to start pressuring these businesses to see that their long-term survival depended on adaptation to new biological realities. The changes he had suggested were so obvious that he couldn’t imagine they would not be adopted before long.

May 18

C
APITOL,
W
ASHINGTON.
D.C.

The letter from Dr. Brandt arrived minutes before the full House Appropriations Committee was to hold its final session on the last major supplemental appropriations bill for the current fiscal year. Even before the letter arrived, everybody on Capitol Hill knew that the committee would vote some increase for AIDS money. The question was how much they would approve. Proponents of more research were pulling numbers from the air. Brandt solved that problem.

“You also asked whether additional resources could effectively be used in the current fiscal year,” Brandt wrote. “As with any situation as dynamic and critical as that of AIDS, funding requirements can change rapidly. Enclose 2 is a description of additional efforts which could be accomplished now and in future months.

“While we are not requesting additional budget authority for these items, we would not oppose Congress giving the Secretary of Health and Human Services discretionary authority to transfer up to $12 million for AIDS activities across appropriations lines of HHS.”

The words stunned administration supporters who had taken the health officials at their word when they said they had all the funds they needed for research. Although Brandt had tried to step delicately around the issue, even the administration’s most fervent supporters did not believe that the request stemmed from any “dynamic or critical” new developments in AIDS. No matter how “rapidly” the situation changed, no dramatic breakthroughs had occurred in the days since Brandt, Foege, Devita, and Krause testified against more funds.

The Appropriations Committee refused Brandt’s request that money be diverted from other programs and quickly approved a bill for $12 million in new funds for the NIH and CDC. Word spread through the Hill that a number of congressional members, including some Republicans, were royally pissed at the dishonesty to which they had been subjected. This thing wasn’t over yet. The House would vote on the package the next week, and aides were betting that the whole sorry story would make it to the House floor.

In the Senate, AIDS posed a different problem, requiring maneuvers to deny that body’s cadre of ultra-right-wing members, elected during the Reagan landslide of 1980, an opportunity to expound on AIDS. Although he was a conservative Mormon from Utah, Senator Orrin Hatch, chair of the Senate Committee on Labor and Human Resources, was committed to not letting health become a partisan issue, particularly in regard to AIDS. Hatch’s committee, however, included some of the looniest, raving New Right homophobes in the Senate—Jeremiah Denton from Alabama and John East from North Carolina. Thus, when Henry Waxman’s Public Health Emergency Act went to Hatch’s committee, he made the unusual parliamentary move of holding the bill at his desk and allowing it to go straight to the Senate floor without a hearing. Hatch figured that it was better to have no hearing, than one in which health issues would get mixed up with the fringe Moral Majority politics.

These were the legislative acrobatics that AIDS would routinely demand on the Hill for years to come.

May 20

The National Cancer Institute and National Institute for Allergy and Infectious Diseases issued a request for scientists to apply for the $2 million in grant money that Bill Kraus and Tim Westmoreland had maneuvered through Congress last fall. The application deadline was August 1. Under new, expedited processes, the money might be available by the end of the year, although, privately, most scientists figured that the money would not actually get to research institutions until 1984. This $2 million in awards marked only the second call for research proposals issued by the NIH during the epidemic.

May 24

With the full House vote on AIDS funding due the next day, Dr. Edward Brandt assembled the top officials from the CDC and NIH for a news conference. There was much said about the promise of the HTLV lead and about people not panicking over blood transfusions, but only one sentence mattered.

“It’s our number-one priority,” Brandt said. “I feel a great sense of urgency about AIDS.

“I am aware of the fact that a number of people feel we have not been sensitive enough to the problem,” said Brandt. “Our response has had nothing to do with the membership of any high-risk group involved. These people are victims of an illness and we are going to do whatever we can to stop that problem.”

With those words, Brandt stole the thunder that the House of Representatives had planned to unleash a day later and elevated AIDS to a new dimension of importance, even if the administration was not willing to spend any more money on the problem. From now on, whenever administration officials were pressed on the federal response to AIDS, they would reply: “This is the administration’s number-one health priority.” It certainly sounded sincere enough.

By the day that Dr. Edward Brandt declared AIDS to be the administration’s top health priority, 1,450 Americans had contracted the disease and 558 had died.

The Next Day

U.S. H
OUSE OF
R
EPRESENTATIVES,
C
APITOL

Congressman William Natcher needed unanimous consent of the House to introduce his last-minute amendment for an additional $12 million for AIDS research. Congressional aides Tim Westmoreland and Michael Housh held their breath in the gallery, hoping no redneck would object and wreck everything. Nobody did. Natcher and Silvio Conte co-sponsored the measure. Upon its introduction, Natcher asked that the earlier testimony of Margaret Heckler and Ed Brandt against new AIDS funding be introduced into the record. The remarks, he felt, spoke for themselves.

Congressman Conte was obviously angry as he rose to recall how he grilled the various chiefs of the CDC, NCI, and NIAID about the adequacy of funding. To make sure their duplicity was accurately recorded, Conte inserted the interrogations word for word into the
Congressional Record.

The House of Representatives passed the funds unanimously.

Congressman Henry Waxman shuddered as he read all the news stories about the nation’s number-one health priority. If this was how they treated their number-one health priority, he wondered, what do they do with number two or three?

AMA N
EWS
R
ELEASE FOR
R
ELEASE
F
RIDAY
, M
AY
6. 1983

E
VIDENCE
S
UGGESTS
H
OUSEHOLD
C
ONTACT
M
AY
T
RANSMIT
AIDS

CHICAGO
—Evidence suggesting that Acquired Immune Deficiency Syndrome (AIDS) can be transmitted by routine household contact is presented in this week’s
Journal of the American Medical Association.

James Oleske, MD, MPH, and colleagues report eight cases of otherwise unexplained immune deficiency syndrome among children from the Newark, N.J., metropolitan area born into families with recognized risks for AIDS.

“Four of these children have died,” the authors report. “Our experience suggests that children living in high-risk households are susceptible to AIDS and that sexual contact, drug abuse or exposure to blood products is not necessary for disease transmission.”

Related articles by Arye Rubinstein, MD, and others, and Joseph Sonnabend, NB, MRCP, and colleagues suggest that AIDS can be transmitted to fetuses in the mother’s womb, and that the syndrome is acquired by male homosexuals as a result of life-style behavior that apparently overworks and ultimately virtually destroys the immune system….

Commenting on the study in an accompanying editorial, Anthony S. Fauci, MD, of the National Institutes of Health, points out, “We are witnessing at the present time the evolution of a new disease process of unknown etiology with a mortality of at least 50 percent and possibly as high as 75 percent to 100 percent with a doubling of the number of patients afflicted every six months.”

At first the disease appeared to be confined only to male homosexuals, he adds. Then it became clear that IV drug users also were susceptible, and after that the disease was found among Haitians and hemophiliacs, the latter apparently exposed through transfusion of blood products.

“The finding of AIDS in infants and children who are household contacts of patients with AIDS or persons with risks for AIDS has enormous implications with regard to ultimate transmissibility of this syndrome,” Fauci says. “If routine close contact can spread the disease, AIDS takes on an entirely new dimension,” he adds.

“Given the fact that incubation period for adults is believed to be longer than one year, the full impact of the syndrome among sexual contacts and recipients of potentially infective transfusions is uncertain at present. If we add to this the possibility that nonsexual, non-blood-borne transmission is possible, the scope of the syndrome may be enormous.”

AIDS D
ISEASE
C
OULD
E
NDANGER
G
ENERAL
P
OPULATION

CHICAGO
(AP)—A study showing children may catch the deadly immune deficiency disease AIDS from their families could mean the general population is at greater risk from the illness than previously believed, a medical journal reported today.

If “routine” personal contact among family members in a household is enough to spread the illness, “then AIDS takes on an entirely new dimension,” said Dr. Anthony Fauci of the National Institutes of Health in Bethesda, Maryland.

Arye Rubinstein was astounded that Anthony Fauci could so much as even imply that household contact might have anything to do with spreading AIDS. Rubinstein had never been a great admirer of New Jersey’s Dr. Oleske; they had antithetical views of AIDS in children. To Rubinstein, the mode of transmission was fairly obvious and fit quite well with existing epidemiological data on AIDS. The mother obviously infected the child in her womb. The fetus and parent shared blood as surely as an intravenous drug user, hemophiliac, or blood transfusion recipient. The fact that none of the infants in Oleske’s study were over one year old reinforced this notion. In order to interpret this data to mean that “routine household contact” might spread AIDS, an entirely new paradigm for AIDS transmission was needed. Rubinstein’s paper explained it all very easily, though the
Journal of the American Medical Association
seemed more enamored with Oleske’s specious analysis. In fact, the journal at first returned Rubinstein’s paper with the section on intrauterine transmission crossed out. The paragraphs had only appeared because Rubinstein had insisted that they be retained.

What was Fauci’s problem?

Upon investigation, it turned out that Anthony Fauci had not been sent Rubinstein’s paper before writing the
JAMA
editorial. Instead, he read only Oleske’s conclusions before writing his editorial.

As an AIDS clinician at the National Institutes of Health Hospital, Anthony Fauci was noted for his heroic efforts to save lives early in the epidemic. He had risen rapidly in the NIAID hierarchy and was deemed a major NIH expert on AIDS at the time the
infamous JAMA
editorial was published. Fauci quickly cast blame on a hysterical media for taking his comments “out of context.” After all, he had said only that
the possibility
of household transmission
might
raise all these scientific implications. The lay public did not understand the language of science, he pleaded. Science always dealt with hypotheticals; this did not mean he was saying that AIDS actually
was
spread through household contact. Moreover, the chief villain, he would accurately note, was the press office of the American Medical Association, which had so shamefully sensationalized the medical journal articles in an effort to draw attention to a journal that always found itself playing second fiddle to
Science
and the
New England Journal of Medicine.

No matter who was to blame, the coverage afforded to the “routine household contact” press release set in motion a wave of hysteria that no disclaimer would prevent. At the
San Francisco Chronicle,
science editor David Perlman rewrote the story, focusing instead on Rubinstein’s interpretation of the data. After completing his revisions, Perlman proceeded to call
the JAMA
press office and deliver a loud dressing-down to the public relations director who had unleashed this mischief. Few other newspapers had writers as sensitive to the social fallout of AIDS stories.
The New York Times
and
USA Today
ran the flawed AP version of the press release, as did most newspapers in the United States.

As it was, nervous health officials and reporters had spent months talking about AIDS being spread through “bodily fluids.” What they meant to say was semen and blood, but the term “semen” is one that polite people don’t use in conversation, and blood banks still objected to the use of the term “blood.” The media’s circumlocution salved sensibilities but not public fears. Saliva was a bodily fluid. Could AIDS be spread through coughing? It was a question already being asked of Selma Dritz with greater frequency. Moreover, the report created a lasting impression on the public that would raise the hysteria level around AIDS for years to come. Scientists just aren’t sure how AIDS is spread, the thinking went. Because of the long incubation period, possible transmission routes existed that might not reveal themselves until later—until it was too late. Anthony Fauci had said as much in his ill-considered editorial.

Indeed, transmission routes may have seemed mysterious in 1982, but by 1983 the mysteries were solved. All the ways to get AIDS were established by then, and scientists, at least at the CDC, understood precisely how AIDS was spread. Nevertheless, the report of routine household contact lent scientific credibility to ungrounded fears; the social damage would linger for years. The fear inspired by this one story defined the context within which AIDS was discussed for the next crucial months.

The pictures on the front page of the morning paper a week after
the JAMA
story marked the first tangible fallout. For weeks, San Francisco police officers had been sending memos through their union, posing fears about what they should do with bloodstained clothes of a crime victim who might be gay. Some union officials advised officers to write a special report every time they had contact with a possible AIDS sufferer. The report could be used at a disability hearing if the policeman got AIDS. The household contact study ignited similar fears among firefighters. Within days of the article, San Francisco officials had to act. By the next Friday, face masks, rubber gloves, and ten-minute education tapes on AIDS were being passed out in every firehouse and police station in the city. The photo of an officer trying on one of the resuscitation masks started cropping up in dailies and newsmagazines across the country in the fearful weeks that followed, a virtual emblem of the AIDS hysteria that enveloped the nation because of the household contact “findings.” The second epidemic had commenced—the epidemic of fear.

The same day that masks were handed out in San Francisco, prisoners at a New York State prison in Auburn started a hunger strike because the cafeteria’s eating utensils had been used by an inmate who had died of AIDS a week earlier. Days later, California dentists were advised to don gloves, masks, and glasses to protect themselves from AIDS-infected patients. New York City morticians began rumblings about whether they should be forced to embalm AIDS victims, and police departments across the country started agitating for face masks, like those in San Francisco.

May 16

L
UNDYS
L
ANE
, S
AN
F
RANCISCO

Matt Krieger was in his office at his cottage in Bernal Heights when Gary Walsh called.

“I’m in the hospital,” Gary said.
“Pneumocystis.”

Matt started to cry.

“I’m going to beat it,” Gary said. “I’m just tired a little, but I’m going to survive.”

When Matt hung up, he called his best friend Liz over to his home and explained the situation. He and Gary had been drawing closer in recent weeks, but Matt had been more distant than he would have preferred, trying to respect Gary’s apparent need to be alone. With Gary in the hospital for the first time, Matt now wanted a complete rapprochement. He wanted to be back in Gary’s life full time. It was what he had wanted since moving to San Francisco: a lifelong commitment in which you shared everything, the good and the bad, the joy and the pain.