AL 721, and the Deadly Silence

Published by SAN FRANCISCO SENTINEL, January 2, 1987. Also published by AIDS TREATMENT NEWS, same date.


The statement below was written by a friend of mine who was near death from AIDS in early 1986, but now is healthy. His experience adds urgency to the increasing weight of scientific evidence suggesting that AL 721 can be a major help to some people with AIDS or ARC. (This treatment, extracted entirely from egg yolks, could legally qualify as a food; it
has no known side effects or dangers. It is easy to make and inexpensive.)

Why can't you get AL 721? (1) Why has Federal research funding effectively blacklisted safe, promising treatments available now, such as AL 721, DNCB, and lentinan? I don't know.

Why haven't physicians and their professional organizations informed themselves about treatments like AL 721, and insisted on rational public policies for research and availability? Here the answer seems clear.

In the past, most physicians have not considered it part of their job to learn about, let alone use or advocate, unapproved or experimental treatments. But today we have an emergency where the Federal government has abdicated its responsibility to research the most promising treatments available now. Treatment research has been driven almost
entirely by commercial motives which, due to the costs and complexity of getting any new drug approved in the United States, necessarily favor high-tech, novel, patentable treatment options -- the very ones unlikely to be available for years.

Since malpractice insurance seldom covers use of unapproved treatments, physicians naturally are reluctant to recommend or use them. But the bigger problem, and our focus here, is that physicians and medical organizations have refused to even look at those treatments they have refused to use. Apparently the medical profession has avoided this conflict between the welfare of their patients and their own need for
insurance protection. It is easier to insist, even against the evidence, that there are no workable treatments available, that everyone with AIDS will die. This view gets them off the hook, but becomes a self-fulfilling prophecy.

Parents of a child with AIDS obtained AL 721 from an Israeli physician. But the child's U.S. physician, an AIDS specialist, said that he would withdraw from the case if the child used AL 721, since he knew nothing about the treatment. The parents gave the medicine away.

AIDS organizations, too, have shirked their duty to study treatment issues and then advocate in the interests of persons with AIDS. For example, although the San Francisco area has 50 AIDS organizations, only two, to my knowledge, have taken any steps whatever to inform themselves or anyone else about AL 721, and very few have worked to change public policy to make
this and other treatments more available.

Again it's not hard to see why. To involve themselves in public policy issues concerning non-approved treatments, after physicians had refused to do so, would embarrass the medical profession, from which funding agencies take their cue. An atmosphere has developed where it is safe to hold the hands of the dying, but risky for organizations to even study the
treatments available now which all available evidence suggests are likely to save lives.

Consider another possible treatment: BHT (see SF Sentinel, August 15, 1986). In every laboratory and animal test, it has inhibited every lipid-coated virus against which it was tested, including herpes, CMV, and many other viruses; in the laboratory it was especially effective against CMV, an opportunistic infection which causes many deaths of persons with AIDS. Agricultural scientists studied BHT after its use
as a feed preservative caused vaccination failures, apparently by blocking the action of live-virus vaccines; the scientists found that BHT in the diet protected animals against major diseases caused by lipid-coated viruses.

The AIDS virus is lipid coated, and therefore probably vulnerable to BHT. BHT crosses the blood-brain barrier. It's use in humans (as a food preservative) is well known, and the risks are small. It is inexpensive and readily available in high-quality form prepared for human use. Obviously this highly promising treatment deserves scientific testing for AIDS
or ARC, but nothing whatever has been done. Both the medical profession and the AIDS organizations have maintained an eerie, near-total silence about this failure to follow up on one of the most promising treatment possibilities we have.

Journalists are eager to report on AIDS treatment neglect and mismanagement. But most news organizations forbid their employees to cover medical-treatment stories until after they are published in medical journals.

And so some of the best treatment research leads have fallen between the cracks.

Why wait for history to record that many deaths were unnecessary, that another holocaust happened because so many were silent?

We can make a change. All that's needed is to get people involved in treatment research issues, closely enough so that they can make independent judgments and decisions. The facts are so compelling that if only people knew what was happening, improvement would be inevitable.


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The following statement is by a person with AIDS who has used AL 721 for most of a year. While we know that testimonials do not prove a medicine effective, we published this one for several reasons. First, years of the most reputable laboratory study have strongly suggested that AL 721 might work for treating AIDS or ARC, especially for persons who
do not have KS or other cancers; early results of clinical trials are highly encouraging (2). Second, so little human testing has been done that every case adds significantly to our knowledge. And third, we don't present this case as proof, but as an urgent attempt to bring the treatment to wider medical and public attention. U.S. physicians and their patients should be allowed to use it now, especially since it is
entirely safe, instead of being told to wait months or years for more studies. The biggest obstacle to availability is that worldwide licensing restrictions have kept everyone away from AL 721 except for one small company, which has not chosen to market it in any country at this time.

"My Illness

"I noticed a difficulty with my health during the summer of 1985. I had a painful separation from a job. My energy dropped. I attributed it to mental depression.

"During the fall I suffered with strange illnesses: an ear infection that wouldn't respond to antibiotics; athlete's foot; frequent colds. In January of 1986 I had the worst "flu" of my life, and it wouldn't go away. Toward the end of the month I developed a tightness in my chest and a bad cough. Then I went to the doctor. The ELISA test, a T-lymphocyte subsets, and a viral culture confirmed what I did not want to hear. AIDS.

"I was given Bactrim for the pneumocystis, and the cough abated. But my strength was gone. I could no longer work. During February and March, I developed painful sores. A fungus spread to my legs and arms. My skin was scaly, with red blotches. I had fits of perspiration at night; I had fevers. I couldn't eat; I became thin. Worst of all was the
generalized feeling through my body that I was dying. Indeed, I was dying.


My Treatment With Active Lipids (AL 721)

"At this time a good friend of mine -- an Israeli citizen -- was doing some investigation on my behalf. She discovered a treatment developed at the Weizmann Institute of Science in Rehovot, Israel. By express mail she sent me a most remarkable document -- a letter full of promise. As I read it, my condition had deteriorated to the point where I had hardly the
strength to breathe. I knew my death was imminent.

"So I took a leap of faith -- I had nothing to lose anyway. After writing goodbye letters to my friends and loved ones, I was taken, in a wheelchair, to the El Al plane, along with my mother and my closest friend. I don't know how I endured that long flight. My Israeli friend met the plane, and took us to our hotel.

"The next day I began treatment with AL 721, a potent form of lecithin which makes your cell membranes resistant to viral attacks. It is derived from egg yolks. AL 721 looks and tastes like butter; you spread it on your bread and eat it morning and evening. My Israeli doctor said to me, "The Americans don't like our treatment. It's too simple for them."
"During the first week of treatment there was no change in my condition. The three of us were planning how to deal with a corpse so far from home. But after two weeks of treatment, lo and behold! I did feel stronger. My diarrhea seemed less severe. I began to eat. During the first month I gained some weight.

"I consumed these Active Lipids through April, May, and part of June. When I came back to the U.S.A. I walked off the plane -- no more wheelchair. I continued my treatment by taking a heaping tablespoon of granulated lecithin mixed with a raw egg yolk daily. During June my T-4 count continued to rise, even without the Active Lipids. My sores and skin rashes
disappeared.

"By the end of August, however, the T-4 numbers were heading down again. Since AL 721 is not available in the U.S.A., I once again flew to Israel. Another month of treatment lifted my T-4 number significantly.


"Post AIDS"

"In February and March my moribund condition had forced me to let go of my plans, my hopes, my loves, my career, my possessions, and life itself. The pain was unspeakable. When it came over me that some unfathomable hand of fate had determined that I would not die, but live, I became semi- hysterical. I remained that way through most of the summer. Why should I have been allowed to receive this miraculous
treatment when it had been denied to so many others?

"As I write this, I have no more physical symptoms. The infections have gone; the night sweats have stopped; I have no more fevers. I am able to eat again, and my weight is close to normal. The last symptoms to disappear were the red blotches and scaling on my face. In October these, too, went away.

"I am trying to make sense of all this. I tell my story in hopes that it may help someone. I remain easily excitable. When you have been to Auschvitz and survived, I think you never get over it."


Footnotes

(1) A few Americans may be able to receive treatment with AL 721 in Israel, where it was developed. For information, see SF Sentinel, December 26, 1986, page 12, or call John S. James, 800-TREAT-1-2.

(2) For information on the scientific background of AL 721, send a self-addressed stamped envelope to John S. James, P.O. Box 411256, San Francisco, CA 94141.