On January 27, The New York Times published a short article that was clearly intended to provide the final, definitive word on a controversy over the medical treatment of AIDS babies that, just a few years earlier, gripped much of the city.
Using the kind of vocabulary that cautious journalists rarely use with such certainty, the Times asserted that a new study by a nonprofit research institute had settled questions about whether foster children at a convent in Washington Heights had actually been killed in drug trials.
“The Vera Institute,” the Times announced with finality, “concluded that none of the 532 children in the trials died as a direct result of the medications.”
Take a look at that sentence again. It doesn’t leave much room for doubt.
But when the Voice called up the Vera Institute of Justice to ask what it was like for its criminal justice researchers to wade into what was once a fierce controversy over the use of very sick black and Latino foster children for experimental and highly toxic AIDS drugs over a 13-year period, the people at the Institute didn’t sound so certain.
This is what Tim Ross, director of the Vera Institute, said when he was asked about the assertion that none of the sick children had died from the toxic drugs themselves:
“Trying to nail down the precise cause of death was very difficult. But to say that they died because of the trial . . . we couldn’t say that,” he answered.
Note the difference: not, “None of the children died as a result of the medications,” but, “We couldn’t say that.”
Ross went on: “You also can’t say that any particular kid benefited or lived longer from some of the medicines. Would they have died in three months instead of six—or a year?”
It was impossible to say with certainty, he pointed out. And why was that? Despite the Times‘ confidence in the Vera Institute’s study, some of the people at the nonprofit say they were incredibly frustrated when they set out to investigate what had really happened to the children in what was a nightmare scenario, at best. And the source of the frustration?
Well, there’s this, for starters: The Vera Institute, chosen by the city to provide an independent assessment of what happened, was never able to acquire the actual medical records of the children involved, despite repeated attempts to obtain them.
The majority of the 25 children who died during the trials were extremely sick with full-blown AIDS when they began the testing, which has led the researchers to believe it was unlikely that they died due to the medications. But they don’t know for certain. Without medical records, the Vera Institute says, it is also impossible to know what the actual effects of the drugs were on any of the children or how much they suffered.
“Most people would be happy they weren’t dead,” says Ross. “But there was a lot else we found troubling.”
So maybe it’s worth taking another look at what happened at the testing facilities for very sick children, to determine what else troubled the people at the Vera Institute—despite the public pronouncements that there is nothing to see here.
Four years ago, the Times wrote a much longer story that laid out, in a skillful and comprehensive way, the origins of the controversy and how it had come to light. (The Voice itself, as far as we can tell, wrote nothing at all.)
“Most of the questions have arisen from a single account of abuse allegations—given by a single writer about people not identified by real names, backed up with no official documentation as supporting proof, and put out on the Internet in early 2004 after the author was unable to get the story published anywhere else,” the Times noted.
That writer was Liam Scheff, a man who lives in Boston, comes from a family of doctors, is “nearing 40,” and who, in 2003, knew that he was onto a remarkable news story about the way foster children in Washington Heights were being used in medical experiments.
There’s little doubt that Scheff uncovered a troubling and fascinating part of the city’s history. But the problem wasn’t that he was an “independent” journalist who tended to get stories published only on the Internet.
No, the problem was that Liam Scheff was on a crusade, one that made it especially unfortunate that he was the one who stumbled onto what was happening at an old convent converted into a sickhouse for foster children.
Scheff was very concerned about the sick children at the Incarnation Children’s Center who were the subject of drug trials from about 1989 to about 2002—there’s no doubt about that. But he is also part of a small but insistent group that doubts that HIV causes AIDS; considers HIV tests to be highly inaccurate; and believes that AIDS medications cause more harm than good. Medical science considers all three subjects long settled: HIV tests are actually among the most accurate in the field; AIDS drugs have helped turn what was once a death sentence into a manageable disease; and HIV’s role in AIDS is well established.
The doubters resent the label they’ve been saddled with—”AIDS denialists”—and complain that the term is intended to equate them with the lunatic fringe that denies the existence of the Holocaust. But denial certainly seems to be a theme in the story of one of Scheff’s most well-known colleagues, the person who actually tipped him off to the situation at Incarnation.
We’re talking about Christine Maggiore, perhaps the country’s most famous AIDS denialist, who, after being diagnosed as HIV-positive in 1992, rejected the theory that it causes AIDS.
She’s dead now, having died of AIDS-related illnesses this past December after refusing to take AIDS medicines and denying to the end that she had HIV or that it could develop into AIDS.
That was her choice, and, naturally, her small following continues to believe that her fatal pneumonia was not caused by AIDS and that her death is not the best evidence that she was simply wrong in her beliefs.
But, more tragically, Maggiore took someone with her. In 2002, she gave birth to a daughter. During her pregnancy, Maggiore refused to take drugs that could reduce the risk of passing HIV to her child. She also breast-fed the girl, which is not recommended for women who are HIV-positive. Maggiore refused to have the child tested for HIV. Three years later, the girl caught a cold that quickly became serious, resulting in her death. An autopsy by the Los Angeles County Coroner’s Office concluded that the girl had developed pneumonia as a result of advanced AIDS.
Maggiore denied vehemently that she had allowed her personal politics to kill her child. She turned to an ally, a Ph.D. whose research primarily involved animals, who ginned up a study claiming that the girl had instead died of a reaction to amoxacillin.
But in 2003, years before the death of her child and before her AIDS denialism resulted in her own demise, Maggiore contacted a man she knew, Liam Scheff, with a tip about a story about AIDS drug testing in an uptown Manhattan foster home.
Scheff went to the foster home and concluded that children were being seized from their parents so they could be pumped with experimental drugs that were killing some of them. (Neither allegation, it turned out, was substantiated.) His article was also shot through with denialist language, such as that AIDS tests are “highly inaccurate.”
Scheff shopped around his story, “The House That AIDS Built,” to various publications, including the Voice, which rejected it. The story was passed around on several websites before it exploded. The New York Post ran its own version of the story. The BBC produced a documentary based on it.
Scheff had found parents or guardians very willing to be interviewed. In the early days of the epidemic, when medicines had serious side effects and the disease itself progressed slowly, some parents felt it was the medicines themselves making the children sick. Many of these people were willing to believe that children had been taken away so that they could be put in trials. (The state is legally allowed to remove children from homes on charges of medical neglect. But there’s no evidence children were removed so that drug trials could be conducted.) Meanwhile, relatives and advocates couldn’t get answers from the city’s child welfare agency. The agency couldn’t even tell the public how many children had been in trials.
An angry audience packed a City Council hearing in May 2005. When the new commissioner of the city’s Administration for Child Services, John Mattingly, testified, he was called a Nazi doctor and accused of committing genocide and crimes against humanity.
The story of pediatric AIDS in New York was actually a success story: The mother-to-child transmission rate had been brought down by 90 percent. But the controversy threatened to undermine the faith of many in the medical establishment.
Over time, the most heated rhetoric subsided as the agenda of Maggiore and Scheff became better known. The Times, in its 2005 story, quoted physicians who were adamant that they had done everything possible to follow ethical guidelines and care for the children, beginning in a desperate time when HIV was a death sentence and there were no approved medicines for children. (AZT, the first AIDS medicine, was approved for children in 1990.) The BBC, after being shown evidence that the facts had been distorted, retracted much of what was in its documentary.
And today, the Times sounds satisfied that the controversy has been settled with an independent study.
Except that it’s not that simple. Even disregarding the unscientific fevered dreams of Maggiore and Scheff, much of what the children experienced at the Incarnation Children’s Center was horrific, and there’s little doubt that much of the testing work and record-keeping in the various sites around the city that conducted clinical trials were questionable. The Voice wanted to know: While keeping at bay the distracting background noise from the denialists, is there still a story to be told about what went wrong—and what went right—at testing sites like Incarnation?
Unlike the Times, we decided to start with someone who actually lived through it.
Until he was 14 years old, Jason Thomas (not his real name) spent the bulk of his life in three places: He lived with relatives, he spent time in hospital beds, and he stayed at the Incarnation Children’s Center. Today, he can’t recall how much time he spent in each place, and there aren’t many adults in his life who would have kept a record of it.
At 22, he is a handsome and slender man who wears his hair braided tightly against his scalp. He is polite and sweet-natured, and he jokes around a lot. But when he isn’t joking, a serious look comes onto his face. He knows he has had a difficult life.
Thomas was born HIV-positive in 1987. In that year, about 240 children in New York City were born with the virus, and their median life expectancy was estimated at 38 months. Only about half of the children born with the virus in 1987 are presumed to be alive today.
For this meeting, Thomas has come to a restaurant in Washington Heights to meet Mimi Pascual, a former nurse’s assistant at Incarnation whose apartment is nearby. Like Thomas, Pascual practically grew up in the Center. She started working the night shift at Incarnation when she was just 17, making barely above minimum wage. She worked there for nearly a decade, until she was fired in 2004, and she’s one of the few people who stays in contact with Thomas. A few years ago, she helped him get on welfare and into public housing. He lives in the Bronx, but he came all the way from his job in Brooklyn at a large telecommunications company to see her. He said he was proud to be both healthy and employed.
One of the first things Thomas does is pull out his baby pictures, which he often carries in the breast pocket of his jacket. “The funny part is that I wasn’t even supposed to live,” he says. “But I showed everyone, didn’t I?” He then shows a photo ID that was taken when he was 17. In it, his face is twisted in a grimace.
“That’s when I had cancer,” he says. It was Burkitt’s Lymphoma, a cancer of the lymphatic system that can affect people with HIV. “I graduated from high school on a hospital bed.”
When he was just four years old, Thomas was taken out of Incarnation by his grandmother, and then he later moved in with his mother, who was a drug addict. “My mom was cool,” he says. “Except when she got high.”
At age seven or eight, he got sick and spent a year at Columbia Presbyterian Hospital. Then he went back to Incarnation and later visited his mother, who became hospitalized with AIDS. The last thing he did for her, he says, was put lotion on her body. He says she smelled very bad, and the nurses wouldn’t touch her—and he didn’t think that was right. “I know I did something for my mother,” he says. She died the following week.
It was during his second stay at Incarnation that he met Pascual. For both of them, Incarnation was a defining experience. Thomas says that those memories are actually some of the happiest of his life. He was surrounded by nurses’ assistants and volunteers that doted on him and took him on outings and to a playroom. “Incarnation was my playground,” he says. “I ran that place.” When he was around nine years old, he drew a picture that was auctioned off at a fundraiser attended by celebrities like Rosie O’Donnell.
Pascual’s memories have a different tone: Some are warm, but others are traumatic. “When I was working there, I was only 17 years old. We were the official ass cleaners,” she says. “Our job was to wipe asses and clean up blood and shove tubes down their throats.” The children that Incarnation took in had often been rejected by other foster homes, either because they were too ill or because of the stigma of HIV.
It was a pediatrician at Harlem Hospital, Stephen Nicholas, who had turned Incarnation into a home for sick foster children. Harlem Hospital was ground zero in the HIV epidemic: The hospital was reporting one of the highest number of births of HIV-positive children in the country at the time. As the Times reported in 2005, Nicholas knew it was time to find a place for the most ill children when, at the hospital, one of the patients called him “Daddy.” Incarnation’s mission, to serve the sickest of the sick, gained it much positive publicity. Princess Diana even paid a visit.
But for the workers, it could be a grim experience. Pascual remembers changing a 13-year-old’s bloody diaper in a public park. The medicines that the children took—especially during the trials—had many toxic side effects. When children could not process their medications or would spit them out, the medicines were sometimes administered through stomach tubes. The children would pull the tubes out, she says. Though she was not a nurse, Pascual was instructed to pop them back in.
Pascual had her own photographs to show. One little girl at Incarnation, who Pascual says was about seven years old, looked like she was on the brink of starvation. Asked if the girl had died, Pascual responds, “Of course.”
In one horrifying experience, Pascual remembers how a child, after taking medication, became violently ill and died in the middle of the night. Although the child had black blood coming from every orifice, Pascual says she was told to keep the child in bed and not take him to the hospital: “That was the most horrible death I ever experienced,” she says. “It just gets to the point where you wonder, ‘How much do you sacrifice one to save the other?’ “
Others who worked at Incarnation have similar recollections: Renee Carlyle worked briefly as a nurse at Incarnation, beginning in 2002. “ICC was a mess. That was no joke,” she says. “They put two people in a cubicle when the room wasn’t adequate for one. You have kids with growths, bumps on their skin, skin conditions up the wazoo. That place wasn’t really set up to house children that were that sick.”
But the most difficult part, says Carlyle, was the psychological effect on the children of being around so much death. “It was psychological torture for all of those children,” she says. “They are knowledgeable enough to know that they all have the same disease.”
Thomas also remembers the trauma around him. “There were a lot of psychotic kids,” he says. “That shit will have you just zoned out.” He remembers a boy whose skin was covered in scabs, who would pick at them and then flick them at the staff. One day, the boy flicked a scab at Nicholas. The boy was soon transferred out. “They did that to the wrong white person,” Pascual jokes.
Thomas remembers getting a phone call from the boy soon after he left. “He called me and said, ‘Hey, I’m riding horses’—and the next day, dead.”
Of the approximately 300 children who resided at Incarnation, the institute reports that about 60 took part in the drug trials. The children weren’t told if they were included, so Thomas has no idea if he was one of them—he’s never seen his own medical records. (According to some estimates by the child welfare agency, by 2003, 90 percent of HIV-positive children had participated in a clinical trial.) Thomas has made a few attempts to get access to his records, but a few years ago, when he and Pascual went to Harlem Hospital to request them, they were told by a clerk that the records were so extensive, it would cost thousands of dollars to copy them.
He made another attempt after he was contacted for this story: He sent letters to both the city’s child-welfare agency and to Incarnation, where he was told the records cost 75 cents per page. Thomas requested that the fees be waived. Pascual has contacted Congressman Charlie Rangel’s office to ask that they advocate for lowering the fees.
“After all he’s been through, you’d think they owe him something,” says Pascual.
Though he would like to know what was done to him, Thomas is also ambivalent about how much of the past he wants to uncover. “I’ve been through too much,” he says. “Now, it’s time to chill.”
And Thomas says that’s exactly what he’s doing. He says he hasn’t needed any medication in four years. “I feel fine. I could do whatever you could do, maybe even better,” he says.
In the late 1980s, crack cocaine use had surged, and the spread of crack and HIV was a deadly combination overwhelming New York’s child welfare system. In 1987, the Centers for Disease Control estimated that between 60 and 70 percent of injection drug users in the metropolitan area were HIV-positive. Pregnant women who used drugs often had their babies taken away from them at birth. Many of these children were born sick, and the mothers were often themselves sick, too, or unable to care for them because they used drugs. Few foster agencies were equipped to take care of sick children, or they were reluctant to take them because of the stigma associated with the disease. So the kids stayed in the hospital, with nowhere to go, for months at a time.
It was in that environment that Nicholas founded Incarnation. Like many other pediatricians who faced the AIDS crisis directly, he began to administer drug trials. In the days before AIDS medications had been approved by the FDA, people fought to get into such trials, most of which were being administered to gay men. But when more children—predominantly black and Latino—started to become infected, activists saw getting them into trials as a civil rights issue. Congress gave the pharmaceutical industry incentives to conduct pediatric AIDS trials. But because it took a long time to approve drugs and people were dying, activists pressured the FDA, in 1989 and 1990, to create what were known as “expanded-access” programs, so that people could have access to the drugs before they had even been approved. In the HIV epidemic, the lines between medical research and treatment were often blurred.
When the city’s child welfare agency decided to enroll foster children in trials, they were aware of the historical weight of doing so. Even so, many things happened that suggest the protections supposedly in place for foster children didn’t function properly—and a lot went wrong. “In a lot of cases, they did it right,” says Ross. “But when it was wrong, it was so badly done, it’s striking.”
For one thing, the city’s policy was that a child would not be allowed to enroll in a trial unless there was some potential benefit. That meant no placebos. But in two trials, 22 children were given placebos.
It was also policy to have consent forms be signed by a parent or guardian—or by the child welfare agency when the parents or guardians could not be located. Consent forms, however, were signed by people who didn’t have the legal authority to do so. Some parents gave consent over the phone, which was not considered proper consent. In 21 percent of the cases, the Vera Institute could not find consent forms at all. And in one case, a parent had specifically expressed the wish that his child not be enrolled in a trial. A few weeks later, agency records indicated that the child’s parent “could not be found,” and the child was enrolled in a trial anyway. “That’s not supposed to happen,” says Ross.
Because clinical trials can be so dangerous, there are many layers of protection written into the system. But in many instances, the structures of protection existed in name only.
For instance, the FDA requires that trials be conducted in three phases, with the first being the riskiest. Phase I trials test drugs that have never been tested on human beings. It was the child welfare agency’s policy to prohibit Phase I trials, but children were enrolled in them anyway, the Vera Institute discovered.
“I honestly concluded, on a personal and professional level, that, given what was at stake, you can’t allow enrollment with this sloppy level of record-keeping and consent process,” says Dennis deLeon, a member of the ACS advisory board and a man who has been HIV-positive for 30 years and has participated in clinical trials. “To kind of just chalk it up to clerical errors, which is what they basically do, is very dangerous.”
DeLeon says he has never enrolled in a Phase I trial. “You’re talking about a compound where there is no track record of its safety except for it being tested on animals,” he says. “To get engaged in weighing whether the process could have worked to [the children’s] benefit, even if there were some significant violations, is sort of like saying, to me, that the rules don’t mean anything. It’s a very cynical approach.”
Another safeguard disregarded: Since the infamous Tuskegee Syphilis Experiment—in which black prisoners in the South were allowed to live with untreated syphilis while being led to believe they were receiving medicine—the U.S. Office for Human Research Protections has required institutions that do human trials to create an institutional review board to assess risks. In 2006, thanks to an investigation prompted by an advocate who had read Scheff’s reports, the OHRP found that Columbia Presbyterian Medical Center—one of the number of institutions that conducted many trials in New York—hadn’t even evaluated the risks the studies would pose to the participating children.
When the Vera Institute was asked to investigate the drug trials, its researchers were given a list of 796 children who might have been subjected to the tests. Vera’s researchers whittled that number down to 532. (The city originally thought there were fewer than 100.) It was sometimes like piecing together a puzzle, says Ross, the study’s author. Sometimes, all of the documents—consent forms, trial records—were in a child’s file; other times, Ross says, there were a few “tough calls.”
In 22 cases, Vera researchers were able to confirm that a child had taken part in trials, but they were unable to confirm that the children were HIV-positive. For one child, some tests had come back positive, but one test had indicated a negative.
There were also questions about a conflict of interest, epitomized in Incarnation’s founder, Nicholas, who wore just about every hat one could wear: He was the director of a foster agency. He was a clinical trial researcher. And he was also a member of the ACS advisory panel that approved trials—which meant he was in the position of approving the trials he eventually conducted. And, at one point, he was a leading consultant to ACS on AIDS-related issues.
“That was just outrageous,” says deLeon. “And that’s the one we know about. There may be others we don’t know about.”
But according to Ross, by all accounts, Nicholas was extremely ethical and very careful about the roles he played. Even though he was in a position to gain prestige from the results of his research, there were times he didn’t approve trials because they did not pass the agency standard of having a potential benefit to the child. When Nicholas was interviewed by the Vera Institute, he said, “So, it sounds almost self-serving by anybody to say at this point, ‘Well, you should have had better record-keeping. You shouldn’t have lost those records.’ That’s true. But should any part of the process have been clearly different? I don’t think so. I think this is a success story by a lot of good people doing their best. And I don’t think there’s any regrets in that regard, you know? We didn’t hurt kids—we saved them. I rest my case.” (Nicholas was out of the country at the time this article was written. He and Katherine Painter, Incarnation’s current director, did not respond to requests for an interview.)
Nicholas was demonized by protesters, who compared him to a Nazi war criminal. But many people in the HIV community see Nicholas as a trail-blazer who took action in a time of crisis.
Sharman Stein, the ACS spokeswoman, stresses that it was a tense and chaotic time in which everyone did their best.
As a result of the trials, 15 medications were approved by the FDA for use with children, but what is less well known is that five other drugs were used in trials and some were never submitted for FDA approval, says Ross. That suggests the drugs were ineffective or even caused harm. (Submitting drugs to the FDA for approval is very expensive—companies only bother if they believe they’ll be successful.) The problem is, we’ll never know. While there’s no doubt that the trials at Incarnation and other sites in the city benefited science and public health, it’s also probable that some drugs did harm children. (Information about how the studies were conducted, including the harm to the subjects, is often considered proprietary by pharmaceutical companies.)
The Institute’s report is more than 500 pages long, with dozens of appendixes. While some of the research examines what happened to the 25 children who died during the trials, most of the report discusses the effects of the trials on all 532 children who were enrolled. The Institute could say it found “no hard evidence” that the children’s deaths were caused by medication, and because the children who did die were already very sick, the statistical risk of death from medicine was extremely low. Without medical records, they could conclude little about the overall effects on the children.
“We did see side effects. Did we see every side effect? Almost certainly not,” says Ross. “Because without access to the records, it’s impossible. . . . Did we catch every toxicity by looking at the child welfare files? That is not likely. The child welfare files were not complete. The type of information about the levels of toxicity would have been in the medical records.”
After working on the study for two years, ACS and the Vera Institute made several attempts to get the state to release the children’s records.
In September 2007, the general counsel of ACS, Joseph Cardieri, wrote a two-page letter to Thomas Conway, the general counsel at the New York State Department of Health, in which he said he was writing about “an issue of great importance to the City of New York.” He explained the reasons that ACS was allowing the Vera Institute to investigate, and wrote, “We believe that it is critically important that Vera get an opportunity to review the hospital records of these children, as including such information would provide a clear picture of the health of these children and the progress they made while participating in the clinical trials. . . . We feel that without this information, Vera’s final analysis will be incomplete.”
Two months later, Conway replied. In a terse, three-paragraph letter, Conway wrote that it was impossible to justify giving away patients’ medical records to a third party that is not a health provider. Conway said it would violate the special confidentiality protections that surround HIV/AIDS. “We hope you will understand our constraints,” he wrote.
More letters were exchanged, and ACS asked for copies of the records stripped of identifying information. When that request was denied, ACS simply asked the state if it would go into the files and check for consent forms. But the state’s health department would not budge.
Both Conway and Thomas declined to discuss their legal strategies or reasoning in an interview for this article. But Catherine O’Neill, a senior attorney and AIDS law specialist at the Legal Action Center in New York, says she has never heard of a situation in which HIV/AIDS medical records were released to a third party. She adds that under current law, a person’s records on HIV can be released only with their consent.
“We said, ‘Can you just confirm that consent forms are on file for all the kids?’ ” says Rick Dudley, a member of the Vera Institute’s advisory board and a former medical director of the Washington Heights–West Harlem Community Mental Health Center. “They wouldn’t do that. It was frustrating,” he says. “We felt it would leave people unrelieved—with a feeling that there is something to cover or something to hide.”
Council member Bill de Blasio tells the Voice that he isn’t satisfied with the state’s answer and that, within the next few months, he plans to sponsor a bill requiring the state to release the records to Vera. “If you push, there’s always a way,” de Blasio says.
Liam Scheff, meanwhile, continues to promote his story and resents questions about his motives.
Scheff says that news organizations, like the Voice and the Times, and nonprofits, like Vera, are in what amounts to a giant conspiracy to silence criticism of the AIDS industry. As he explained in an e-mail, “What is the Vera Institute? A legal body? No, its function here has been that of a PR firm; they put out an absolution so that nobody ever gets to find out.”
Scheff complains that his work has been misinterpreted. “What’s the difference between an activist and a journalist?” he said in an interview. “Either you care about the kids or you don’t.”
Scheff met Thomas and Pascual for his story; she often says that she is very concerned about the accuracy of HIV tests.
A few weeks after the dinner in Washington Heights, Jason Thomas called from Columbia Presbyterian Hospital. Days earlier, he had come down with a high fever.
“The doctors tell me I have AIDS, and I am going to die. But before I die, I might go blind,” he said, crying and sounding terrified.
Later, on a visit to his hospital room, Thomas was propped up on a bed on the seventh floor. He was in better spirits, watching a tiny television hanging from the wall and eating chicken nuggets and a Wendy’s Frosty.
“I lost my job today,” he said. The fever had started the week before, and his boss had given him a week off work. Then a week became two, and he checked himself in to the hospital, a place he knows well.
When Pascual and his godfather, a former volunteer at Incarnation named Ed Akter, arrived with more food, the nurses had required them to wear masks, in case Thomas had tuberculosis. “Those masks make me feel even worse,” he said.
One night, Akter met with the on-duty physician, who explained that Thomas had a bad case of sinusitis. Because he was HIV-positive and had a compromised immune system, the doctor explained, a common case of sinusitis could lay him up in the hospital for days.
Thomas was being encouraged to start an AIDS drug regimen, but he didn’t want to.
“Please tell the doctors to stop telling me that I’m going to die. That’s ridiculous. They just can’t say that to a person,” he said. “You people don’t have to live with this. I wake up with this every day. I don’t care if you are a grown man or a baby—you just don’t tell people that they are going to die.”
Experiencing a headache, he asked someone to close the blinds. “There’s not that many people as strong as me,” he said. “Some people, they die real fast. I fight to the end.”
Thomas told Akter that he had asked his doctor about medications. “Why can’t I be a good pill swallower?” He paused and then sat up in bed. “Look, I want to live a long life, just like anyone else. I was born with this, and I didn’t ask for it.”
After he was discharged, Thomas went to Akter’s house in Montclair, New Jersey, to recuperate for a week. (He had lived at Akter’s house for a couple of years when he was a teenager.)
The headache took a while to go away. Soon after, he went to his doctor and began taking medication.