The Stars Reach Out, The Sun Pulls In John R. Chism

 

 

PART II - CHAPTER FIVE

 

"Are you all right, Mark?" one of his friends whispered, back at the Hearing. "We looked for you. Don't sneak off like that, again."

Fauci himself was being sworn in.

He was a short, mildly attractive man who, like Mark, was born and bred in New York City. Fauci looked trim and very professional in his jacket and tie. He was youthful in his middle age. His glasses gave him the sort of dashing quality of a sports car driver. That day his coifed hair was a little unkempt, actually, but his face, with its prominent nose and pleasing round cheekbones seemed congenial, pleasant.

He spoke with a strong New York accent and a slightly pinched but clear tenor voice. His words were well articulated.

"It is a pleasure for me to be here today to discuss the National Institute of Allergy and Infectious Diseases drug development and evaluation program.…"

"'Pleasure?'" Mark thought. "Odd way to put it."

Fauci said that NIAID's drug testing system was a system that developed "rapidly" and that it was making research possible that was "scientifically sound". He admitted shortcomings to the program, and gave a thorough description of changes he hoped to make. Fauci spoke for a while, then wound up by saying, "I would be delighted to answer any questions you might have."

"'Delighted?'" Mark thought. "Seems like a strange word to use."

Weiss grilled Fauci immediately on the question, did NIAID have enough full-time employees or their equivalency committed to AIDS. Fauci, under pressure from Weiss, finally admitted that of the 127 new full-time employees or their equivalency that were requested by NIAID for AIDS, only eleven had been granted.

"Where do you see the snag at this point?" said Weiss.

"Well, I don't know whether you'd want to call it a snag," said Fauci. Mark almost snorted. (It was Mark's suspicion that Fauci always had to answer to the White House. Of course, Mark knew that in these desperate days, his own suspicions often became intense and verged on the irrational. That's why he tried not to voice them, very often. He hated negativity. However, he always felt as though he were fencing with shadows, and that high-profile men like Fauci didn't make the picture any clearer.)

OMB seemed implicated in some of Fauci's response, or so Mark thought.

Later, Representative Pelosi of California asked Dr. Fauci, "… is it not true that in 1985, AL-721 was identified as a drug that showed promise?"

Fauci qualified her claim. She shot back, saying, "Well, did not testing of AL-721 begin in December of 1987?… if there was some promise, why would there be such a long time between the show of promise and the beginning of testing… "

Fauci insisted, "The reason for that, Ms. Pelosi, is that when that drug was put before the drug selection committee, regardless of what was said in the newspapers and other places, the drug was given a low scientific priority compared to other drugs that were being put forth for testing."

Later, Representative Waxman said, "Dr. Fauci, many people have complained that the NIH drug development process is too slow to put volunteers in trials." He pointed out that thirteen months ago, aerosolized pentamidine, to prevent the deadly pneumonia in AIDS patients was given "a very high priority", but enrollment in the trials seemed almost nonexistent.

In Mark's opinion, Fauci was evading Waxman's question, at first, but finally, Fauci said, "… it would have taken - without exaggeration - a person on our staff full time doing nothing else but trying to push aerosolized pentamidine through… we just didn't have the staff…"

Waxman countered, "The pneumonia costs us millions of dollars in Medicaid dollars. Why can't we hire one full-time person to have gotten this study underway?"

Fauci echoed his previous points when he said, they had a "significant shortfall" of people to work on these trials.

Later, Representative Weiss said, "It seems to me that you have to be saying that as far as drug development is concerned, very little has been achieved and you still have a long, long way to go and you need a tremendous amount of assistance to help you move from where you are."

A bit later, Representative Pelosi even asked Fauci, if he were HIV positive would he take aerosolized pentamidine to prevent the pneumonia.

Fauci said, "If I were an individual patient, I would probably take aerosolized pentamidine if I already had had a bout of pneumocystis". He modified his statement, saying, Bactrim might be a first consideration as a prophylaxis, but if he couldn't tolerate it, he'd go with aerosolized pentamidine. People began to murmur about Fauci's words.

Why had the government been slow to tackle that issue, Mark wondered. The question was an anguished one. Thousands of people had died whose lives could have been spared through prophylaxis. Mark wanted to call Fauci a murderer, through negligence. He, himself, had known many men who had died of PCP. He felt as though their graves were like open wounds, now, and that they were crying out not simply for healing, but for justice, against the government who acted like their foe.

Ted Weiss grilled Fauci about why AZT - which was so toxic - was being used by ninety percent of the patients in NIH-sponsored trials. ("And, this 90% does not include controls," Weiss added.)

Fauci summed up, it was because AZT was shown to be effective in parts of the patient population. He added "… It is not because there is any a priori prejudice toward AZT or against other drugs."

Weiss concluded, "…I think that it is probably as unacceptable to you as it is to me that you request 127 full time equivalent staff people and you get eleven, because the dimension of this shortfall is such that you can't possibly meet your needs… So I hope that from these hearings you go forward with a commitment to insist that you get the kind of resources that you need for the sake of the lives of the people whom you and I are trying to serve."

"Yes, Sir," said Dr. Fauci.

The day was past the halfway mark by the time the head of the FDA was sworn in.

Activists listened coolly to Dr. Young. Lights dimmed at the start of his testimony and a projecting screen was provided.

His speech was brisk and energetic, but Mark squirmed. He was afraid Young was doing what many bureaucrats do - spending time rehashing old territory to avoid current issues.

But then Mark realized that assumption was wrong. The testimony began to feel relevant to him. For example, about the issue of full-time employees and the budget, Young said, "I don't have the flexibility, other than to go over ceiling." He said he was taking responsibility for having done exactly that at times, given the seriousness of the crisis.

"Will the staffing and funding levels requested for fiscal 1989 be adequate for the workload on AIDS anticipated for fiscal 1989?" Weiss asked.

Young said, "We feel that we are under, in our request, what we actually need… We are substantially under."

Weiss sermonized, by summoning up a World War II memory.

There was a book back then, the Congressman pointed out, named, The Battle is the Pay off. He continued, "…ultimately success depends on what happens on the battlefield… And my sense is, that with all of the investigations and everything that's going on … the results are mighty sparse."

Representative Pelosi then said to Dr. Young, "… there is almost a rebellion among people who are infected and who have AIDS and ARC." She made many points about speeding up the drug-approval process. Finally, she said, "… you need your own OMB and the administration to be behind you on the budget request."

The afternoon was darkening. (The Christian rally, in town, was still going strong, with nearly 100,000 people.)

Then, Weiss introduced the last speaker of the day: someone from the company that made pentamidine.

But before that, Weiss told the room he had invited other pharmaceutical companies to send speakers, and that among those who declined was Burroughs Wellcome, the makers of AZT.

People were tired. The final testimony was relatively brief. Weiss adjourned. It was 4:17 p.m., April 29, 1988.

While Mark and his friends took a cab back to the budget hotel, (passing the Navy Memorial Building and the J. Edgar Hoover Building) one of the friends said, "Let's stay another night, so Mark can rest. I got money to pay for my share and for his."

"So do I," said the other. Mark's friends were HIV positive, themselves, but they weren't ill.

Mark said, "Lukas died, yesterday. It's in the paper."

"We know. We read about it this morning."

"You knew?" said Mark. "Why didn't you say anything?"

"We were going to. You seemed preoccupied this morning. We're sorry, Mark."

Mark choked back his anger.

  

 

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