It is with great sadness that the AIDSTruth.org team learned of the death of veteran AIDS activist and AIDSTruth contributor Martin Delaney. Martin was recently honoured by the NIAID for his ceaseless efforts to combat HIV/AIDS. The organisation he founded, Project Inform, has released a statement announcing his death:
Martin Delaney, key figure in the fight against HIV/AIDS, dies at age 63
Martin Delaney, who in 1985 founded Project Inform, a leading national HIV patient advocacy organization, died today in San Rafael, California. Delaney, who served as the agency’s Director until January 1, 2008, was 63 years old at the time of his death from liver cancer.
“When the final history of AIDS is written, there is no question that Martin Delaney will be one of the key figures who brought this great human tragedy to an end,” said Dana Van Gorder, Project Inform’s Executive Director. “Marty rose brilliantly to the challenge of persuading sometimes reluctant government agencies, researchers, and pharmaceutical companies to respond in a compassionate and urgent way to the needs of thousands of people dying of AIDS. The fact that we now benefit from a very strong arsenal of medications to treat HIV infection, and from information about how to use them effectively, is largely attributable to this great man. Those of us living with HIV feel deeply the loss of our chief guardian and friend.”
Martin Delaney, long-time AIDS activist, Project Inform founder and AIDSTruth contributor has been honoured with an award for his contribution to the fight against HIV/AIDS by the National Institute of Allergy and Infectious Diseases of the National Institutes of Health. From the NIAID's press release:
Martin Delaney, the founder and longtime director of the HIV advocacy/education organization Project Inform, has been presented with the National Institute of Allergy and Infectious Diseases (NIAID) Director’s Special Recognition Award for his many contributions to the fight against HIV/AIDS.
Mr. Delaney in 1985 founded Project Inform, a leading national HIV treatment and public policy information and advocacy organization based in San Francisco, and served as its Director until 2008. He was a member of the NIAID AIDS Research Advisory Committee from 1991 to 1995, served on NIAID’s National Advisory Allergy and Infectious Disease Council from 1995 to 1998, and also has served in other advisory roles for the Institute.
Anthony Fauci's tribute to Martin Delaney:
Marcus Low of Health24.com has published an insightful piece on Christine Maggiore's death, including her impact in South Africa. He writes:
Like Maggiore, denialists often claim they are exercising freedom of speech and that mainstream medicine is silencing dissent – Maggiore herself at times claimed only to be presenting an alternative – there is clear evidence of the impact that pseudoscience and Aids denial has had on the health of South Africans. Last year Harvard researchers said it was a conservative estimate that more than 330 000 lives had been lost to HIV/Aids in South Africa between 2000 and 2005 simply because the government failed to implement a feasible and timely antiretroviral treatment programme.
In addition, an estimated 35 000 babies were born with HIV during that same period because of government's reluctance to introduce a mother-to-child transmission prophylaxis programme using nevirapine (an anti-Aids drug).
Not implementing such programmes is of course exactly what Maggiore was campaigning for.
Before she became an HIV/AIDS denialist, Christine Maggiore was a successful businesswoman. In 1986, she started what ultimately developed into a multimillion dollar inport/export clothing company, Alessi International, which is based in Italy. However, her life changed in 1992, when during a routine medical examination she was found to be HIV-positive. Initially, she became involved with AIDS charities, including the AIDS Project and Women At Risk, but then in 1994 she met Peter Duesberg, the biologist who, arguably more than anyone else, started the whole phenomenon of HIV/AIDS denialism. By that time she also had had other HIV tests that varied from negative to indeterminate to positive, which had made her start to question whether she really had HIV. After being “converted” by Duesberg, she became an HIV/AIDS denialist and activist, founding Alive&Well, an organization dedicated to providing “information that raises questions about the accuracy of HIV tests, the safety and effectiveness of AIDS drug treatment, and the validity of most common assumptions about HIV and AIDS.” She herself refused to take antiretroviral drugs and discouraged other at-risk mothers from doing so–or from even permitting themselves to be tested for HIV–under the guise of “telling both sides.”
Not surprisingly, when she became pregnant with her second child Eliza Jane, she similarly refused to take antiretroviral drugs in order to decrease the risk of maternal-fetal transmission of HIV. Indeed, she even appeared on the cover of Mothering Magazine sporting her pregnant belly with the word AZT in a circle with a slash through it and the headline HIV+ Moms Say NO to AIDS Drugs. The issue featured Maggiore in an article entitled Safe and Sound Underground: HIV-Positive Women Birthing Outside the System and included other articles about AIDS, such as Molecular Miscarriage: Is the HIV Theory a Tragic Mistake? and AZT in Babies- Terrible Risk, Zero Benefit. (Mothering Magazine’s promotion of HIV/AIDS denialism and antivaccine misinformation may well make a topic for a future post in and of itself. Suffice it to say that Christine Maggiore was very much into “alternative medicine” and refused to vaccinate her children, making Mothering, which is well-known for its promotion of antivaccine views, the perfect venue for her.) After EJ was born, Maggiore refused to allow her to be tested for HIV and insisted on breast-feeding her, even though breastfeeding results in an unacceptable risk of virus transmission to the baby. The stage was thus set for the tragedy that was to come. Read more »
Some reaction in blogs and the press:
- Seth Kalichman: Denialism and the Death of Christine Maggiore
- Steven Novella (NeuroLogica Blog): HIV Denier, Christine Maggiore, Dies
- Ben Goldacre (The Guardian): Will stupid people and their pseudoscience cost more lives this year?
- Andrew Sullivan (The Daily Dish): Children, Sickness And Parents
- David Gorski (Science-based Medicine): Christine Maggiore and Eliza Jane Scovill: Living and dying with HIV/AIDS denialism (highly recommended)
- Respectful Insolence: HIV/AIDS denialists digging themselves in deeper
World-renowned bioethicist Peter Singer writes in New Europe about the tragic consequences of former South African president Thabo Mbeki's AIDS denialism:
Mbeki is culpable, not for having initially entertained a view held by a tiny minority of scientists, but for having clung to this view without allowing it to be tested in fair and open debate among experts. When Professor Malegapuru Makgoba, South Africa’s leading black immunologist, warned that the president’s policies would make South Africa a laughingstock in the world of science, Mbeki’s office accused him of defending racist Western ideas.
The LA Times writes in an editorial:
In some instances, these debates are interesting but not terribly consequential. But sometimes they are of staggering significance. When the theory in question is about the cause of climate change or AIDS, misplaced skepticism, whether cynical or well-intentioned, can lead to grave results. For years, the South African government joined with Maggiore in denying that HIV is responsible for AIDS and resisting antiretroviral treatment. According to a new analysis by a group of Harvard public health researchers, 330,000 people died as a consequence of the government's denial and 35,000 babies were born with the disease.
The death from pneumonia of AIDS denialist Christine Maggiore, 52, is eliciting sadness but no surprise from HIV researchers, AIDS activists, and clinicians. The known facts of the Maggiore case follow the tragic arc of HIV disease in untreated HIV-infected women. Christine Maggiore was HIV-positive, rejected medical care, gave birth to two children, one of whom died at three of AIDS, and then died herself, about 16 years post diagnosis, of prolonged pneumonia, which is a common consequence of HIV infection. These events are consistent with mother-to-child transmission and HIV disease progression to where antiretroviral treatments are not available.
These untimely deaths were unnecessary: they could almost certainly have been prevented by appropriate medical treatment. The still greater tragedy is that Christine Maggiore spent almost 15 years persuading other people with HIV to follow her example, and many of these have died. We hope that the terrible lesson in the deaths of Eliza Jane and Christine will be heeded by those who are still alive: HIV will almost always lead to AIDS and death in those who are untreated, and refusing to believe that this is so offers no protection from the virus.
Read more »
The Lost Angeles Times reports that Christine Maggiore has become the latest HIV-positive AIDS denialist to die after refusing AIDS treatment. The cause of death has not yet been confirmed, but is likely to be AIDS-related. Maggiore founded the "Alive & Well AIDS Alternatives" denialist organisation and wrote and self-published a book What If Everything You Thought You Knew about AIDS Was Wrong? Her 3-year old daughter Eliza Jane Scovill died of AIDS-related pneumonia after Maggiore had refused to take medication to prevent mother-to-child transmission of HIV or to have the child tested for HIV. For more information, see our page on denialists who have died.
Update: The Bay Area Reporter quotes Matthew Sharp sharply criticising Maggiore's denialist activities:
Of course it is a personal decision to choose not to take medical treatment for life threatening conditions but for a person with HIV to go on a personal crusade to brainwash people into believing HIV does not cause AIDS and fooling them to disbelieve life saving treatment is pure insanity," Matthew Sharp, a longtime AIDS activist and former member of the now-defunct ACT UP/Golden Gate and its later incarnation, Survive AIDS, told the Bay Area Reporter. "However, Maggiore, like several other well-known HIV-positive denialists, made their own choices and consequently dug their own graves.
A new book on AIDS denialism by Seth Kalichman will become available in March 2009. AIDSTruth will post a review. Update: Read Seth's blog about AIDS denialism.
The publisher's details:
Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy
Seth C. Kalichman, University of Connecticut
Paralleling the discovery of HIV and the rise of the AIDS pandemic, a flock of naysayers has dedicated itself to replacing genuine knowledge with destructive misinformation—and spreading from the fringe to the mainstream media and the think tank. Now, from the editor of the journal AIDS and Behavior, comes a bold exposé of the scientific and sociopolitical forces involved in this toxic evasion. Denying AIDS traces the origins of AIDS dissidents’ disclaimers during the earliest days of the epidemic and delves into the psychology and politics of the current denial movement in its various incarnations. Read more »
The internet is a powerful medium for information dissemination. But since it is also unregulated, much disinformation, including AIDS denialism is spread on the web. Maxine Clarke's recent article on the ethics of science publishing on the web is therefore highly topical. It is included in a special theme section on the ethics of science journalism being built by the journal Ethics in Science and Environmental Politics.
Clarke, M. Ethics of science communication on the web. Read more »
A new study published in the Journal of AIDS has confirmed earlier estimates by AIDSTruth contributor Nicoli Nattrass that hundreds of thousands AIDS deaths could have been averted by timeous roll-out of antiretroviral therapy in South Africa. The new study by Chigwedere et al. used a model to estimate that more than 330,000 lives or approximately 2.2 million person-years were lost because a feasible and timely ARV treatment program was not implemented in South Africa. Thirty-five thousand babies were born with HIV, resulting in 1.6 million person-years lost by not implementing a mother-to-child transmission prophylaxis program using nevirapine. The total lost benefits of ARVs are at least 3.8 million person-years for the period 2000-2005. This confirms Nattrass's earlier estimates using the ASSA2003 demographic model, which suggested that if the national government had used ARVs for prevention and treatment at the same rate as the Western Cape (which defied national policy on ARVs), then about 171,000 HIV infections and 343,000 deaths could have been prevented between 1999 and 2007. The Guardian and New York times report on the new study. Read more »
The South African Health-e news agency has exposed widespread preying on people with HIV by quacks who peddle fake AIDS cures. Their TV documentary “Quack Alert” was broadcast on popular current affairs programme "3rd Degree" on 25 November. The script of the documentary can be read here. Their article "Quacks do good business in SA" describes how fake doctors openly advertise AIDS cures and swindle desperate (and mostly poor) patients out of large amounts of money. Some even promise to solve financial and relationship problems or improve sexual performance. They also expose how the provincial Minister of Health in South Africa's worst-affected province supports quacks and wants the fake AIDS cure "Ubhejane" distributed in a state-funded hospice. AIDSTruth contributor Nathan Geffen writes about the humorous side of quackery in a piece titled "Why Ozone Rectal Therapy is not the next cure for AIDS". Read more »
Harold Jaffe's new article "The early days of the HIV/AIDS epidemic in the USA" emphasises the power of the epidemiological method to gain an understanding of disease pathogenesis by recounting some of the work done before the isolation of HIV. He says,
Although the importance of [the discovery of HIV] cannot be underestimated, it is also important to understand the epidemiological work that preceded the discovery. It was this work that established AIDS as being most likely caused by a transmissible agent, defined the transmission routes of the agent, suggested its natural history and also provided the basis for initial prevention guidelines.
The Advertising Standards Authority of South Africa (ASASA) has upheld a complaint by the Treatment Action Campaign against an advertisement for fraudulent treatment for HIV which appeared in the Sowetan newspaper on 6 June 2008.
The Nobel prize for Physiology or Medicine has been awarded to Luc Montagnier and Francoise Barre-Sinoussi for their work on the isolation of HIV (as well as Harald zur Hausen for the discovery of Human Papillomavirus as a cause of cervical cancer). A brief history of discovery of HIV may be helpful in putting the recent awarding of the Nobel prize in perspective. There has been a great deal of controversy over the award recognizing the contribution of the French team while ignoring the contribution of the US/Gallo team. The real story of the history is not well understood by either the media or the public. Unfortunately, it seems that the Nobel Committee also lacks some of the facts, or has chosen are narrow interpretation of what was important in the early discoveries. Read more »
These papers are of interest:
- Elliott JH et al. (2008) Rational use of antiretroviral therapy in low-income and middle-income countries: optimizing regimen sequencing and switching. AIDS 22, 2053-2067.
- Greenall J. (2008) Despair and hope in rural South Africa: the story of the antiretroviral drugs that are changing lives. AIDS 22, F1-F3.
by Zackie Achmat
On September 20 2008, as South Africa’s newly acquired Gripen fighter jets took off from a local air show to parade across Cape Town skies, residents would awaken to one of the most remarkable days in the political history of the republic. The Mbeki-Pahad monolith had collapsed.
The decision by the ANC to recall President Thabo Mbeki represents the downfall of the most hubristic executive in contemporary South Africa, and one that has been characterised by the unrelenting denialism of the greatest threats facing our country -- the mounting failure of the criminal justice system to prosecute and convict criminals, the increasingly disturbing nature of violent crime, burgeoning inequality and unemployment, the HIV/Aids catastrophe and the culture of impunity for corrupt and incompetent public officials.
The imposed resignation was long overdue. There were valid reasons to impeach Mbeki even before the Chris Nicholson judgement on three particular charges, all of which in their own right provide enough justification for such action. Read more »
The Daily Dispatch reports that former US President Jimmy Carter has said of former South African President and AIDS denialist Thabo Mbeki, “Frankly I am glad to see him gone.” Carter also reportedly said that the closest he had ever been to a fist fight was when Mbeki told him that anti-retrovirals for mothers infected with HIV/Aids was a plot of white people against black people.
Richard Wilson writes in the New Statesman about his new book "Don't get fooled again." From the piece:
In South Africa, at the beginning of this decade, Aids scepticism gained currency with a political class dismayed at the prices being charged for life-saving medicines. Under the influence of Duesberg and his fellow "dissidents", Thabo Mbeki's government chose to delay for several years public provision of anti-HIV drugs. The economist Nicoli Nattrass estimates that this decision - made amid one of the world's worst Aids epidemics - may already have cost hundreds of thousands of lives.