Key Facts
- In the 1980s, the National Institutes of Health, where Dr. Anthony Fauci served as the director of the Office of AIDS, sponsored clinical drug trials to treat children with HIV/AIDs, as there were no approved treatments for children at the time. HIV-infected foster children were enrolled in these clinical drug trials.
- Beginning in 2004, concerns began to be raised about these clinical trials, most famously in the 2005 BBC documentary "Guinea Pig Kids." The BBC has since apologized for this documentary, stating that it did not properly investigate the claims and that the medical opinions expressed in the documentary largely relied on an advocate for the fringe (and false) idea that HIV is unconnected with AIDS.
- A 2009 investigation found that the most grave allegations at the center of this controversy — that children died from "lethal" doses, that children were ripped away from their families, and that this trial targeted minority children — were false.
- The investigation did find, however, that while health officials developed protocols to ensure that proper consent was given to enroll foster children in this program, these protocols weren't always followed.
- A viral image of a child with Stevens-Johnson Syndrome is frequently attached to this rumor. This photograph is completely unrelated to this clinical trial and this child did not have HIV or AIDS.
- The mortality rate from AIDS among children was drastically lowered between 1980 and 2000.
In October 2021, as the COVID-19 pandemic claimed its 700,000th death in the United States, a number of rumors were spread on social media to disparage Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH) and chief medical adviser to the president. Factions of the internet were pushing back against mandatory vaccinations. One set of allegations, for example, placed personal blame on Fauci for "torturing dogs" in medical research. This prompted more than a dozen members of Congress to sign a letter condemning what they called "a reprehensible misuse of taxpayer funds."
Stoking public outrage further, accusations surfaced claiming that during the 1980s, Fauci had "murdered disabled children" in an attempt to find a cure for HIV/AIDS. Social media posts described Fauci as a "mad scientist" who had experimented on healthy children to find an AIDS vaccine, claimed that Fauci funded a "Tuskgege-like [sic] Aids experiment," and said Fauci is akin to Joseph Mengele, a Nazi doctor who performed inhumane experiments on Jews during the Holocaust.
A Clinical Drug Trial
In the 1980s, at the start of the AIDS epidemic, hundreds of children were born every year with HIV. At the time, there were no approved treatments for children with this disease, so New York City's Administration for Children’s Services developed a program, funded in part by the NIH, that allowed HIV-infected foster children to participate in clinical drug trials.
Fauci told the House Human Resources and Intergovernmental Relations subcommittee in 1989:
"Traditionally, children have not been entered into clinical trials of new drugs until the drugs have been shown to be safe and effective in adults ... But we believe that the life-threatening nature of HIV infection may justify a modification of this policy ... In consultation with the Food and Drug Administration, trials of new agents are now being planned and conducted in such a way that development and testing of the drug in children occurs nearly in parallel with testing in adults."
The social media smear campaign employs gross exaggerations that are based on false information about this program. For starters, those spreading this rumor claim that Fauci performed "heinous medical experiments," but that is not an accurate way to describe a clinical trial. The World Health Organization (WHO) writes: "Clinical trials in children are essential to develop age-specific, empirically-verified therapies and interventions to determine and improve the best medical treatment available."
BBC Apologizes for Pushing Unfounded Claims
The false accusations stem from an article entitled "The House That AIDS Built" that was independently published in 2004. This report, which does not mention Fauci, led to a number of news articles and a BBC documentary called “Guinea Pig Kids,” which claimed that the children had been given lethal drugs, that they were forcibly separated from their parents, and that the clinical trial targeted minority children.
The BBC has since apologized for this documentary and issued a statement saying that it had not properly investigated the claims. The BBC also noted that the medical opinions expressed in the documentary largely relied on a person who was an advocate of the idea that HIV was not connected to AIDS (a fringe -- and false -- idea that was not the consensus of the scientific community), and that the BBC failed to seek other medical opinions.
Vera Investigation Found That No Children Died from the Drugs
These allegations also spurred an investigation by the Vera Institute of Justice. In 2009, Vera published its findings, saying that there was no evidence to support the most grave allegations. Children did not die as a result of these drug trials, children were not forcibly separated from their families in order to participate in the trials, and this program did not target minority children. Vera found that some children suffered serious side effects from the drugs, but also noted that physicians adjusted their treatments to minimize these effects.
Here is an excerpt from this report:
Vera reviewers found little or no evidence in the information examined for some of the concerns that prompted Children’s Services to initiate this study.
Many children—inside and outside of foster care and clinical trials—died because of complications of HIV/AIDS during the late 1980s and 1990s. Eighty of the 532 children who participated in clinical trials or observational studies died while in foster care; 25 of them died while enrolled in a medication trial. Vera medical staff did not find, however, that any child’s death was caused directly by clinical trial medication.
The child welfare files contained information indicating that some children experienced serious toxicities, or side effects, from trial medications, such as reduced liver function or severe anemia. These toxicities were consistent with toxicities described in published articles about the trials. Vera reviewers found many instances where a physician made adjustments to a child’s treatment in light of these problems as required by the clinical trial protocol.
Some Children Were, in Fact, Enrolled Without Proper Consent
The report did find, however, that that officials had failed to follow protocols in a few cases where children were entered into the program without sufficient parental consent. The New York Times reported in 2009:
Sixty-four children participated in 30 medication trials that were not reviewed by a special medical advisory panel, as the city’s policy required. And 21 children participated in trials that the panel had reviewed but had not recommended. (In both cases, 13 of the enrollments occurred before the children were placed in foster care.)
Moreover, the informed consent forms from biological parents or guardians were missing from the child-welfare files in 21 percent of cases, even though regulations and the city’s own policies mandated that they be kept, Mr. Ross said. The state’s Department of Health refused Vera’s request to review medical records, which might have included some additional consents...
The commissioner of the Administration for Children’s Services, John B. Mattingly, said in an interview about the report: “In very general terms, it puts to rest the most egregious charges that were being made by a few people three or four years ago. No children were yanked from their homes. That is all completely false.”
Stevens-Johnson Syndrome
The 2021 social media posts targeting Fauci for blame frequently included photographs of a child apparently suffering from a severe skin condition. These pictures were frequently shared along with the caption: "Think Fauci torturing and killing dogs is bad? Wait till you learn what he did to orphaned kids in NYC for HIV 'research.'"
This photograph is completely unrelated to the clinical drug trials administered at the Incarnation Children's Center in New York. This photograph was taken at Denver's Children Hospital in 1994 and shows Julie McCawley, the daughter of Jean McCawley, the founder of the Stevens-Johnson Syndrome Foundation, who suffered an adverse reaction to phenobarbital, an anti-convulsant medication used to treat pediatric epilepsy.
Jean McCawley said:
The photo shared via social media and in numerous articles is not a photo of a child from Dr. Fauci’s clinical HIV/AIDS trial. Instead, this is a photo of my daughter, Julie McCawley, who had Stevens-Johnson Syndrome to Phenobarbital for Pediatric Epilepsy. I have never met Dr. Fauci, nor has my daughter participated in any of his trials. I am saddened that anyone would share this photo in an attempt to defame Dr. Fauci and inappropriately use this photo of my daughter during her illness.
Stevens-Johnson Syndrome Foundation addressed this photograph further in a news release that you can read here.
The image was included in the 2004 article "The House That AIDS Built" along with the caption: "Photos of an infant with Stevens-Johnson Syndrome, a blistering, peeling, potentially fatal skin rash. It is one of the known side-effects of the AIDS drug Nevirapine. Nevirapine is one of the primary drugs being readied for distribution in Africa."
This caption does not state that the clinical trial drugs actually caused this skin condition, only that this skin condition could be caused by such drugs. In Vera's report, the investigators noted that two children involved in the trial had Stevens-Johnson Syndrome, but added that neither of these cases occurred during the trial:
Stevens-Johnson Syndrome is a severe allergic reaction to medications, and may be initiated by many medications including the antibiotic trimethoprim-sulfamethoxazole (Bactrim or Septra). Two children in the Vera review experienced Stevens Johnson Syndrome. Neither case occurred during a clinical trial.
HIV Mortality Rate Fell
Though the details of this 1980s clinical drug trial were rehashed and misinterpreted in 2021 to claim that Fauci had "murdered" or "tortured" children, that simply isn't the case. This clinical drug trial helped treat children who were fighting a disease with a high mortality rate. This trial, along with other research and programs conducted in the '80s and '90s, led to a reduced mortality rate from HIV.
A 2009 news release from the NIH reads:
In 1994, the mortality rate for HIV-infected children and youth younger than 21 years of age in the United States was 7.2 deaths per 100 person years (a rate based on the number of children in the study and the total number of years each child was followed). By 2000, that rate had plummeted to 0.8 deaths per 100 person years and remained stable through 2006. The mean age at death for HIV-infected youth in the study more than doubled from 8.9 years in 1994 to 18.2 years in 2006.
Although this represents a dramatic improvement in survival, the death rate for children with HIV is approximately 30 times higher than that of similarly aged U.S. children who do not have HIV. Multi-organ failure and kidney disease are now major causes of death for HIV-infected children and adolescents. Infections also continue to cause deaths in this group of patients. However, the type of infections has changed, from infections traditionally associated with AIDS to infections that are more common in children without HIV infection.
"The findings are very encouraging, but they still show a need for improvement," said Alan Guttmacher, M.D., acting director of NICHD. "For both adults and children, combination antiretroviral therapy is highly effective in preventing the opportunistic infections and other complications resulting from HIV infection. We must now better understand and pursue treatments for children and adolescents to address the other conditions resulting from HIV infection."