"Guinea Pig Kids," the BBC affirmed, wrongly implied that the HIV-related medications that were being studied were futile and dangerous, and it intentionally ignored their life-saving efficacy. The BBC further acknowledged that the video was fundamentally biased towards the views of "HIV denialists," who don't accept the scientific evidence that HIV exists and that it causes AIDS. Fraser Steel, the Head of Editorial Complaints, concluded that these are serious breaches of the standards set out in the BBC's Editorial Guidelines concerning accuracy and impartiality, and he extended an apology for the deficiencies in the program and the associated website material. The affirmation of the complaint is very important because the credibility of the BBC had lent undeserved legitimacy to false accusations against ICC and to the disinformation about HIV/AIDS, clinical trials and antiretroviral treatments that is spread by HIV denialists.
The film was written by, produced by, and featured interviews with HIV denialists, but it never identified them as people whose beliefs and claims contradict everything that scientists, doctors, and the communities most affected by AIDS have learned about HIV and its treatment over the last 25 years. HIV denialists have distributed copies of the video widely since it was aired and posted an edited version on the Internet. Jeanne Bergman, Ph.D., the lead complainant and an AIDS activist with AIDStruth.org and the Center for HIV Law and Policy in New York City, explained, "The HIV denialists who made this film invented these charges against ICC. They exploited African-Americans' real and historically-based fears of abuse by medical research and bullying by child welfare agencies. The false allegations about sinister medical experiments on foster children were a Trojan Horse cynically constructed to take advantage of those real concerns in order to spread deadly denialist lies about HIV in the communities most devastated by AIDS. These allegations about ICC have become something of an 'urban legend,' untrue but widely believed, mainly because people trusted the BBC. The fact is that ICC and the more than 30 other agencies in New York that took part in the trials used the clinical trials framework to make life-saving medications, already approved for adults, available to children with HIV who would otherwise have died."
The BBC's retraction and apology followed months of intensive investigation in response to repeated complaints filed by AIDS scientists, doctors and activists, who denounced the video's attack on Incarnation Children's Center as a hoax designed to mislead vulnerable communities about HIV/AIDS. The film and the associated web pages alleged that healthy African-American and Latino children at ICC, a specialized care facility for children with HIV/AIDS in New York City, were harmed and even killed by bizarre and unjustified medical experiments involving lethal drugs, and that if their parents or guardians objected to the experiments they lost custody of their children. These allegations, the complaint argues and the BBC agreed, are untrue and unjustified, and were motivated by HIV denialism.
The BBC has not yet publicly posted the retraction and apology, which were presented in a 12-page letter, dated 31 July 2007, from Mr. Steel to Dr. Bergman.. "The BBC has been shamefully slow to respond to our urgent concerns," she said. "We have been asking them to examine our charges that this independent video is HIV-denialist propaganda with no basis in science or fact since the video was broadcast in 2004. It took until this year for the BBC to properly investigate the piece. Now, two-and-a-half months have passed since we received Fraser Steel's letter apologizing for the video's misrepresentations and bias, but the BBC has still not issued a public retraction and apology, nor stated what actions it intends to take to redress this situation. I am horrified that the BBC would air a lurid, untrue video about HIV clinical research and treatment in the first place, and I am angry about the BBC's inexplicable delay in retracting publicly the very dangerous lies to which it has lent its fading legitimacy."
Dr. Bergman said she has been informed by the BBC that the delay in issuing a public statement is the result of on-going "discussions at the highest editorial level" given the "very serious issues raised by this matter," but, she said, "The BBC needs to act now. The BBC webpage promoting the video is still up, promulgating HIV denialist lies. There is as yet no effort by the BBC to correct the systematic disinformation about HIV and its treatments that it broadcast, and which has damaged the public's understanding of HIV and impeded HIV- infected children's access to lifesaving care."
No children at ICC died as a result of the clinical trials. Enrollment in the trials was conditional on the likely benefits to the child and a low risk of harm. Written consent was obtained from parents and guardians, who were not paid or otherwise improperly influenced to enroll their children. The National Institutes of Health, Columbia-Presbyterian Hospital, the New York City child welfare agency (the Administration of Children's Services, or A.C.S.), and other institutions provided multiple layers of oversight. And while two non-parental guardians interviewed in the video did have foster children with AIDS removed from their custody on the grounds of medical neglect, those children were not involved in the clinical trials. Rather, the foster parents interviewed had lost custody because they had refused to follow medical advice and provide the children with the approved, standard-of-care treatments for HIV/AIDS that had been prescribed for them, and without which the children would have become ill and died. The BBC affirmed that there was no evidence that children were taken from their families because they resisted "experimentation." The filmmakers falsely tried to "create an association between [the clinical] trials and a loss of parental rights," the BBC found.
HIV denialism is a collection of contradictory and scientifically unsound beliefs-that HIV does not exist, that HIV it exists but is not the cause of AIDS, and that AIDS does not exist. Dr. Nicholas Bennett, a Ph.D. and M.D. specializing in pediatrics who has opposed the denialists for nine years, was scathingly critical of the BBC's decision to air a video that was based on beliefs that are without scientific merit. "If someone had simply researched the individuals involved in promoting the story, and those interviewed during the program, it would have been quickly apparent that their views were not only those of a fringe element but also demonstrably wrong," he said. "'Balance' in the media does not mean giving equal air time to poorly-researched and biased material with the goal of gaining viewers with a sensational story. The saddest thing is that this story was sensational only due to the errors and bias inherent in it. The fact that it was produced by the BBC gave it an air of respectability that was wholly undeserved. Clearly the BBC needs to review its fact-checking practices." John Moore, Ph.D., an internationally renowned HIV researcher at Cornell-Weill Medical College, added, "An important lesson for the BBC is the need to have its highly professional science and health reporters review documentaries like this one before they are released for public viewing. No scientifically literate journalist would ever have endorsed this one's contents and slant."
The BBC's retraction of the video was also applauded in South Africa, where the Health Minister's AIDS denialist views have seriously hampered HIV prevention and access to HIV treatment. Nathan Geffen of the Treatment Action Campaign there said that "The BBC ruling, albeit late, is welcome. The lies peddled by pseudoscientists like [film-maker] Jamie Doran and David Rasnick [a denialist who was featured in the film] have caused confusion and death. They try to appeal to minorities and vulnerable groups by misusing human rights language to portray themselves as progressive. But behind most AIDS denialists lies either a desire to sell untested snake-oils to sick people or an incapacity to consider evidence rationally."
About AIDStruth.org: In March 2006, after Harper's Magazine published a feature article by AIDS denialist Celia Farber, a number of scientists and activists joined together to create a website for the purpose of countering AIDS denialist misinformation and debunking denialist myths, while providing truthful information about HIV and AIDS. The result is the AIDSTruth.org website. The AIDSTruth website receives no funding from any source. The team members contribute to the website in their spare time, and decisions as to content are made by the team members in the interest of global public health.
About The Center for HIV Law and Policy: CHLP is a national legal and policy resource and strategy center for people with HIV and their advocates. Launched in 2005, CHLP works to reduce the impact of HIV on vulnerable and marginalized communities and to secure the human rights of people affected by HIV. We support and increase the advocacy power and HIV expertise of attorneys, community members and service providers, and advance policy initiatives that are grounded in and uphold social justice, science and the public health. (www.hivlawandpolicy.org)
For more information:
Background to the ICC Story: http://www.nypress.com/18/25/news&columns/bergman.cfm
Nathan Geffen, Treatment Action Campaign, South Africa; email: email@example.com
Nicholas Bennett, M.D., Resident Physician, Dept. of Pediatrics, University Hospital, Syracuse, NY; email: firstname.lastname@example.org
John P. Moore, Ph.D., Professor of Microbiology and Immunology, Cornell-Weill Medical College, New York, NY; phone 212-746-4462; email:
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