If thou didst ever hold me in thy heart,
Absent thee from felicity awhile,
And in this harsh world draw thy breath in pain,
To tell my story.
                                    – Hamlet, 5.2.360–363

Christine Maggiore, a stalwart among questioners of "orthodox" beliefs about the cause and treatment of AIDS, died last December 27th in her home in Van Nuys, California. She was 52, and had been struggling to recover from bilateral bronchial pneumonia, diagnosed several weeks earlier. The HIV-AIDS establishment soon began spreading word that Maggiore's pneumonia was probably AIDS-related; she had tested positive for HIV in a routine physical exam in 1992, retested with conflicting results, but had remained healthy ever since, with no signs of progression to AIDS. I think it improbable that the bronchial pneumonia she succumbed to was related to AIDS.

I published two columns about Maggiore in Townsend Letter (June and July 2006). The first dealt with the death of her 3½-year-old daughter, Eliza Jane, in May 2005 from an allergic reaction to a penicillin derivative for an ear infection. This column also refuted suggestions in the media that Maggiore's views on HIV and AIDS had deprived Eliza Jane of "appropriate" treatment. The second column reviewed attempts to hold Maggiore criminally responsible for Eliza Jane's death. I'll repeat here the essential part of my conclusions about Maggiore and the campaign to portray her as the murderer of her daughter: "I can't buy into her being a neglectful parent, or the shabby notion that her dissent on HIV and toxic antiviral therapy are essentially responsible for her child's death, or – least of all – the simplistic labeling of Maggiore's choices of care for herself and her children as 'flaky'" (Townsend Letter, July 2006).

This quotation mentions Maggiore's "children." She and her husband, Robin Scovill, had had two. They had an older boy, Charlie. Celia Farber, a journalist known for her independent reporting on AIDS, reconstructed the moment of Christine's passing, saying: "Charlie was sleeping in the master bedroom, and I was thinking what a blessed relief for the boy to be sleeping, when anything is possible, when reality recedes. … The boy is so beautiful it stops your heart. … How can we ever tell him the story of the furious winds that took his mother."

Christinemaggiorememorial.com
There's a "Memorial Wall" on a website created to honor Christine Maggiore, www.christinemaggiorememorial.com, where visitors are invited to express their feelings. I sampled the expressions extensively. Maggiore's life and AIDS activism left a deep impression on many people.

Roberto Giraldo, MD, wrote: "Humanity's leaders never leave us. Christine, like El Cid Campeador, will continue winning battles long after death."

Celia Farber responded more personally: "I just phoned your cell phone to hear your voice. Remember how we used to say that everything was going to 'go our way?' I wish I could call you up, to tell you, 'Christine, you did it! You had no chance and you took it, and it seemed so hopeless, and yet you did it – your message has been delivered, to those who needed it most, and everybody heard you, and the love you intended was safely conferred, in the end.'"

In a series on AIDS published in Townsend Letter, I interviewed Dr. Giraldo (October 2005); interviewed Farber (December 2005); and reviewed her book, Serious Adverse Events (October 2006). Giraldo had predicted the emergence of AIDS in the US, and had quickly challenged the official announcement that HIV is the sole cause. Farber had covered the AIDS scene for two decades; her book is subtitled "An Uncensored History of AIDS."

Both were longtime, ardent friends of Christine Maggiore. I chose the excerpts above because Giraldo touches on the heroic, warrior component in Maggiore's opposition to the HIV-AIDS establishment, and Farber brings in love as a core element in Maggiore's activism. Later in this column, I will say more, generally, about battles and love in connection with doctors, patients, and others who depart from the medical mainstream.

I met Christine Maggiore once, in New York City several years ago. The international organization Rethinking AIDS was meeting in the Big Apple. She and David Crowe, a Canadian, were members of the board of directors, and I invited them to lunch. I confess I have a clear memory of only two things. Maggiore and Crowe had strolled from their hotel to the restaurant, Maggiore in jeans. Before sitting down to eat, she went to the ladies' room and changed into a skirt. After the meal, when Crowe left us temporarily, Maggiore surprised me with: "You're better-looking than you are in pictures."

Working with Maggiore via e-mail and phone on the columns I published about her, I realized at once that she was persnickety concerning adherence to facts and avoidance of misrepresentations. After so many falsehoods and outright slanders about her over the years, she had grown super-careful about the truth, and I understood and deeply respected her for that.

This column is my response to the invitation to express myself about her activism and death on her website's memorial wall. If I ever do, I would bear in mind that preceding the plea from Hamlet, quoted at the head of this column, are the words:

O God! Horatio, what a wounded name,
Things standing thus unknown, shall live behind me.
The "wounded name" and "things standing thus unknown" could apply to Maggiore. But I would quote Horatio the moment Hamlet dies (changing "sweet Prince"):
Now cracks a noble heart. Good-night, Christine,
And flights of angels sing thee to thy rest!

At Odds with the Medical Mainstream
Celia Farber stated in our interview: "There are certain ideas that for some reason are radioactive, and the people who are in power and in control have always sensed that. … There's a hatred of dissidents … a visceral fear and loathing, a ferocious reaction … I've lived in the fire and fumes of that contempt for the last 20 years; it's had an enormous impact on me."

My immersion in the politics of health care occurred 25 years ago this January, when I volunteered to assist cancer patients of Dr. Emanuel Revici in their struggle to prevent the New York State Health Department from revoking his license. I've recounted portions of this struggle in Townsend Letter and elsewhere. Someday, I hope to write a book on the cancer care complex, in which I'll fully account for what befell Revici and his patients.

It is an account that exemplifies how clinicians who start their careers in the mainstream can wind up marginalized or driven from the medical profession – because they persist in developing valid therapeutic discoveries or insights that are beyond fathoming by the great majority of their contemporaries in the clinical research community.

Patients of these ground-breaking doctors, particularly those who believe their survival depends on treatment by the doctors, can find themselves under immense pressure to abandon them. This part of the account upsets me most, and I'll expand on the reasons here. First, let's nail the basic reason for the contemptuous scorching of Maggiore and Farber by the mainstream.

The HIV-AIDS establishment and like-minded media contend that questions voiced about causation and treatment by dissenters like Maggiore and Farber discourage people who test positive for HIV from taking anti-HIV therapies. That's the fundamental mainstream "indictment" against them. A sulfurous reaction to Maggiore's dissent surfaced in an online ABC news story after her death:

AIDS researchers and public health advocates have overwhelmingly condemned her work and personal life as deadly. "They caused the death of thousands of South Africans by delaying treatment and spreading infections," said Dr. Charlie van der Horst, a professor of medicine at the University of North Carolina in Chapel Hill. … "There is a space in hell reserved for them," said van der Horst.

Farber speaks of "fire and fumes" in the mainstream contempt of dissidents. Perhaps, as she spoke, an image of heretics being burned at the stake by the Inquisition played in her mind. The invective against Maggiore in the ABC story brought images of mud, or slime, into my head, reminding me of my initial encounters with "quack-busters" and government officials and media hostile to Dr. Revici and his alternative cancer treatment. National TV coverage of a committee hearing in the US House of Representatives in the mid-1980s included testimony by an attorney with an active malpractice suit against Dr. Revici. The attorney claimed that Revici's treatments had killed thousands of cancer patients. Revici, he declared, as though it were indisputable, was a mass murderer. One of Revici's patients, a professor in remission under Revici's care, carried a briefcase crammed with documents to Washington, and reviewed the documentation with the committee's chief of staff. "What you've shown me," commented the staff chief, "indicates that there's plausible scientific evidence for the effectiveness of Revici's treatments. But in Washington, perception matters, not facts."

Also in the mid-1980s, a local New York City TV channel aired reports on Revici for three consecutive nights. This channel's news anchor intoned at the beginning of each broadcast: "They say that desperate cancer patients walk into Revici's office and are carried out dead." The first day that the field reporter appeared with his crew at Revici's clinic, the staff canceled all appointments and called in two or three patients in long-term remission, each able to speak convincingly about the treatment given them. I stood by, as liaison with Revici's patients and the media. In strode the reporter, stopping near me, the top of a yellow pad sticking out of his pants pocket. I could easily read the handwriting scrawled on the pad: "We are in the cancer mill of Dr. Emanuel Revici. Patients crowd the waiting room. The line stretches into the street."

In the late 1980s, a cable channel on Long Island (New York) invited on a talk program a young woman who had presented to Revici with an aggressive, advanced brain cancer. Her mother accompanied her. The channel invited, too, the same lawyer who had proclaimed Revici a mass murderer on nationwide TV. Leading mainstream hospitals had diagnosed the girl's cancer but could provide no treatment, and had advised the mother to prepare for her daughter's death. Revici had stemmed the cancer; when she appeared on TV, the girl was in remission, confirmed by brain scans. The lawyer confronted the young woman and her mother, bellowing like a bull: "You never had cancer! Revici never cured you! You've been hoodwinked!"

With such experiences, and I can relate numerous similar incidents involving Revici and his patients, and many incidents involving other doctors and patients who use various alternative therapies, I can't accept as gospel the tripe that appeared posthumously about Maggiore on ABC News online.

Nor can I swallow the rationale for lies and misrepresentations about people who publicly differ with the mainstream over the causes and treatments for disease. This applies not only in AIDS, or cancer, but in Lyme disease. (I wrote a report on persistent Lyme for the Lyme Disease Association, Lyme Disease Update, which the association published as a paperback in 2004. I'm preparing a thorough revision for publication this year.)

Under this rationale, lies and misinformation about approaches to care that depart from community practice are permissible – to warn patients away from doctors specializing in treatment given by a minority of the medical profession, to pressure patients under such care to return to mainstream therapy, to discourage other physicians from trying approaches disapproved of by the medical establishment.

Gabe Pressman, a nationally respected TV news reporter, interviewed the chief counsel of the Office of Professional Medical Conduct (OPMC) in the mid-1980s. The OPMC is the investigative/disciplinary arm of the New York State Health Department, the agency that actually prosecuted Revici and recommended revocation of his license. (The recommendation was stayed and commuted to probation for five years.)

For the gist of this interview, I'll paraphrase:
PRESSMAN: Where will Revici's patients go if you revoke his license?
COUNSEL: They will have to find other doctors.
PRESSMAN: Most of the patients have been to other doctors before seeing Revici, and failed to improve. If you take Revici from them, where can they go?
COUNSEL: They will have to find other doctors.

Instead of seeking other oncologists, the patients rallied around Revici and enlisted sympathetic government officials and media; and these officials, working behind the scenes with favorable media publicity, thwarted the OPMC attempt at revocation. In various adverse scenarios, patients of the late Lawrence Burton, PhD; Stanislaw Burzynski, MD; and other "unconventional" cancer doctors successfully defended their caregivers. What still astonishes me is that the individual groups of patients were no larger than guerilla bands! Resourcefully, tenaciously, they met the massive establishment attacks on their doctors and forced the establishment to back off.

Richard A. Jaffe, for over 20 years an attorney for high-profile alternative and complementary doctors, published a personal memoir, Galileo's Lawyer, in 2008. I interviewed Jaffe and reviewed his book (Townsend Letter, Feb./March 2008). An excerpt from my column on Jaffe and his book adds perspective to the discussion here about the cost of bucking the medical establishment.

It refers to Jaffe's insightful account of a trial of Dr. Burzynski's antineoplastons, sponsored by the National Cancer Institute (NCI), and "sabotaged" (Jaffe's word) by investigators at Mayo Clinic, Minnesota, and Memorial Sloan Kettering Cancer Center, New York.

Reminiscing about his university studies on the history and philosophy of science, [Jaffe] confesses that he left graduate school because he was "tired of just seeing ideas bounce off other ideas." He "wanted action."

In many of his cases, Burzynski in particular, he's gotten all that a man primed for action could wish for, plunging into various combat zones in medical politics – into battles he wryly termed "the applied philosophy of science."

"These battles," Jaffe stresses, "were not esoteric. They were brutal, and fought in the trenches of life. Real patients were involved and their lives were at stake. These Burzynski NCI trials showed me up close how dirty, unscientific, and immoral medical science could be. It was a far cry from what I learned in my philosophy of science classes two decades earlier."

Note that underscoring Jaffe's observations in the preceding paragraphs is the fact that he dedicated his memoir to patients who "had to fight their government before they could fight their disease."

Today, vicious battles in medicine rage over HIV and AIDS. Skirmishes between proponents and patients of conventional and unconventional care occur in cancer, but nothing like the heavy poundings of prominent alternative therapists in the mid-1980s. Patients and physicians seeking to diagnose and treat chronic Lyme disease continue to walk over a minefield. The infectious-disease establishment has long held that chronic Lyme infection is overdiagnosed and overtreated, but recent research has supplied increasing evidence for persistence of active disease. People who develop an illness that resists conventional therapy, should they find an alternative approach that seems more effective and less harsh, can find themselves in two fights: the first against the illness, the second against all who would deprive them of the alternative treatment or attempt to dissuade them from staying with it. (Count in well-meaning relatives and friends worried that the alternative therapy is worthless.)

Doctors trying alternative approaches on patients who've failed to benefit from conventional therapy, or are virtually certain to receive no benefit from it, can become embroiled in an emotionally and financially draining struggle to retain their license – should a state medical board charge them with departing unacceptably from standard care.

Individuals gifted in speaking or writing who publicly, stubbornly question whether HIV has much to do with AIDS, and whether AZT, antiviral drugs, etc., do more harm than good to people testing positive for HIV, can expect the HIV-AIDS establishment to strike back constantly and savagely. And they had better guard themselves against many low blows, for in this uncivil strife, the establishment feels foul is fair in clearing the field of challengers.

Dr. Giraldo paid Christine Maggiore a high compliment, evoking in her honor El Cid, the warrior whose valor and prowess in battle are legendary.

Part Two of this column will appear in next month's issue of Townsend Letter.

Marcus A. Cohen
marcusacohen@aol.com