AL 721 Today, Part II: Where to Get It, How to Use It

Part I (AIDS Treatment News #42) gave an overview of the experimental AIDS treatment AL 721, also called egg lecithin lipids. Part II answers specific questions such as how to use AL 721, and where to find buyers clubs or distributors. Part III includes more technical information, and references.

The Buyers Club Movement

The HIV-positive buyers clubs are typically nonprofit organizations set up by persons with AIDS, ARC, or a positive
antibody status, in order to buy nutritional products at wholesale prices, especially products not readily available in
health-food stores. These organizations also help in consumer protection, by making more sophisticated product selection and purchasing decisions than individuals would be likely to do on their own, negotiating better prices with vendors, and often sending samples of products to commercial laboratories for independent testing. Most of the buyers clubs work together well, sharing information and negotiating as a unit when necessary, so they provide the power of a national network created and controlled by HIV-positive persons and entirely dedicated to making the best treatments available.

In practice, buyers clubs vary widely. Some of the smaller ones skip the considerable paperwork of incorporating as a nonprofit, so technically they are for-profit businesses even if they were not set up to make money. Some clubs will ship products by mail; others are not set up to handle mail order, so customers must pick up their orders locally. Some need to collect money in advance and then place orders, requiring a wait; others have stock on hand.

Besides organizing group buys of products, buyers clubs can also serve as treatment-oriented support groups. People share information not only about products handled by the group, but about whatever has or has not worked for them, including local physicians and clinics, and all kinds of conventional, experimental, or alternative treatments. These grassroots groups fill the gap left by major AIDS support organizations, which have usually refused to allow their support groups to focus on treatment information.

You don't need to buy from the clubs. Egg lecithin lipids are now also available from distributors or mail order outlets
(see below). You may want to go through the clubs because of the information network they provide. Also, the clubs may have the best products, because manufacturing quality can vary from batch to batch, and sometimes clubs do their own testing in order to reject all but the best batches.

Most of the buyers clubs started in the last few months. The biggest impetus to the growth of this movement was the fact that until recently it was the only way to obtain all-egg generic AL 721. These organizations--especially the PWA Health Group in New York, the largest and most experienced of them--sought out industrial sources of supply, and arranged bulk purchases to make the products available to the public.

Buyers Clubs List

We have listed phone numbers but few additional details; you can call for more information. This list is alphabetical by city; it may not be complete, but we did not deliberately exclude anyone. We plan to publish updated lists from time to time.

** Chicago: TPA Group (Test Positive Aware); contact Chris Clason, (312) 728-1943.

** Long Beach: Long Beach Nutritional Buying Club, (213) 439- 9640. Does ship orders.

** London: Contact Colin Clark, Vanmount Ltd., 299-1409.

** Los Angeles: Nutritional Products Buyers Club, (213) 856- 0436. Does ship orders.

** Minneapolis: Contact Steven Katz, The Aliveness Project, PWA Coalition, (612) 822-7946.

** New York: PWA Health Group, (212) 995-5846.

** Orlando: AIDS Coalition Endowment, (305) 896-9093.

** San Diego: Alliance 7 Buyers Club, (619) 281-5360.

** San Francisco: Healing Alternatives Buyers Club, (415) 641- 6208. Meets every Tuesday evening. (Contact person for PWA/PWARC north of Marin County: Jerry Mack, (707) 575-1851.)

** Tulsa: Nutrico (formerly Oklahoma Project Inform), (800) 338-5352. Does ship orders.

** Vancouver: Vancouver PWA Coalition, (604) 683-3381.

Also note list of distributors and mail-order suppliers below.

Different AL 721-Like Products

The official AL 721 is not available. The patent licensee, Ethigen Corp. (formerly Praxis Pharmaceuticals) is seeking FDA approval to market AL 721 as a drug, a process which may take several more years. Meanwhile Ethigen could legally market the material as a nutritional supplement without medical claims, but the company has not done so.

Meanwhile a number of generic products more or less close to AL 721 have become available, through the buyers clubs and otherwise. A confusing and sometimes bitter debate has arisen over which is best. Here is how we see the current situation.

The "home formula", made from concentrated soy lecithin (usually PC-55, a product of Twin Laboratories), has shown good results, and it costs about a quarter as much as the others.

But now we also have several all-egg generic versions which are closer to the official AL 721, and the consensus is that these are better than the soy-lecithin substitute. The interest today is in the all-egg versions, although some people still prefer the soy home formula because it has worked well for them.

Several powder and/or capsule egg lecithin products have also appeared on the market. These are not close to AL 721--even if they advertise as egg lecithin with a 7:2:1 ratio--and we don't recommend them as an AL 721 substitute.

Four different all-egg versions are available today. We believe that all of them are acceptable, but none is completely satisfactory. Here is an annotated list, in alphabetical order of the names by which they are most commonly known. See below for names and phone numbers of companies which distribute these products--or contact the buyers clubs listed above. Note that some of the buyers clubs carry more than one of these products; for example, the PWA Health Group in New York carries three of them.

** American Rolland. This product was first distributed in May of this year, by the PWA Health Group in New York. It is the only one which has been used long enough by enough people to have much information available from surveys of users; and the survey results, as well as informal word of mouth, have been very favorable. Disadvantages are that (as with most of the other products) the ratio of the ingredients is not ideal; it has about seven percent PE (phosphatidylethanolamine), instead of the 10 percent which would be preferred. Also it is not packaged in a convenient form, so it needs to be thoroughly mixed and then separated into individual doses by the user.

** EggsAct. This is the only one available now which can keep for a reasonable time without refrigeration--an important feature for travelers--in sealed individual-dose packages. (Refrigeration or freezing is recommended when possible.) It is extracted from fresh egg yolk with food-grade ethyl alcohol. EggsAct is sold in over three hundred health-food stores, making it more convenient to buy but also more expensive than the others. The PE is lower than we would want--about seven percent, like most of the others.

** Jarrow. This product has convenient packaging and a low price. The PE has been low, about seven percent like the others, but the last two batches have improved to about 8.5.

** Levine. Manufactured by a new process co-designed by Steven Levine of Allergy Research Group/Nutricology, which distributes the product, and Abco Laboratories of Concord, CA, which manufactures it, this product is the first to get the right PE level, about 9.5-- the closest to the Israeli formula yet available. It does not have the convenient packaging, however, and has a taste and smell which some people object to.

Some in the buyers clubs have assumed that the Levine product is clearly the best because it has a PE level closest to the original AL 721. My own feeling is to reserve judgment and avoid picking any one as best at this time. Much is still
unknown; for example, the different products look and taste different, and have different consistencies, for reasons that
nobody has fully explained.

The Levine product is the first one to be custom made with the PE level the buyers clubs wanted. The other three are off the shelf from large companies which have produced and sold them for some time for other purposes; these companies have been reluctant to custom manufacture a modified version for our use. But on the other hand, the designers and the manufacturer of the Levine product are new to the lecithin business, so they are at an earlier point on the learning curve. And the product is so new that we don't yet have much reporting on results. We choose to list all four of these versions as acceptable, instead of naming one as clearly best.

Recently the buyers clubs have learned that Houba Inc. in Culver, Indiana, the company which has manufactured official AL 721 for Ethigen beginning in 1983, will enter the market with its own egg lipid product, probably by December 1. Houba is considering simultaneously conducting its own research which could lead to FDA approval for certain medical claims, while selling the same product as a food supplement in the meantime. The food product will be manufactured with the same standards of quality control used for pharmaceuticals. The buyers clubs are especially interested as this company has much more experience than the others in manufacturing what they want.

Houba will market this product through Rachelle Laboratories, Inc., an ethical pharmaceutical company which is a
Houba subsidiary.

Prices

Most of the all-egg AL 721 substitutes are selling for about $150. to $200. per kilogram--a one- to three-month supply
depending on the dose used. For those using an average dose the cost comes to about $3. or $4. per day. Prices have been dropping.

The soy "home formula" costs about $1. per day for the same dose.

Distributors and Mail-Order Suppliers

If you call for product information--as with the buyers clubs--ask for egg lecithin lipids. Vendors cannot call this
product AL 721, nor discuss medical uses.

** Allergy Research Group / Nutricology, (415) 639-4572. Distributes the Levine/Abco product.

** American Rolland Chemical Co., Inc., (201) 345-1111.

** Intrend, (408) 429-1596. Distributes EggsAct by mail.

** Houba, Inc., Culver, Indiana. Rachelle Laboratories product not available before December 1.

** Jarrow Formulas, (213) 659-4754, wholesale only. For retail purchases, call Jack Olsen at Health Remembered, (818) 767-8889; or call The Vitamin Trader, (800) 334-9300 from California, (800) 334-9310 from elsewhere in the U.S.

** Rachelle Laboratories, Inc. See Houba listing above.

** Source Naturals, (800) 468-9168 from California, (800) 538- 0740 from elsewhere in the U.S., (408) 438-6851 from anywhere. Distributes EggsAct through health-food stores. Call (408) 438- 1144 to find a store near you which carries the product.

** Vanmount Ltd., London 299-1409.

How to Use AL 721

Your doctor should know what treatments you are using. But if you ask whether you should use AL 721, it is hard for
physicians to say yes, because this treatment has not been officially approved. Instead, patients usually ask if there is
any reason not to use it. If your physician is entirely intolerant of non-approved treatments, then it is your decision whether or not to find another doctor.

One dosage schedule has been 20 grams per day (10 in the morning and 10 in the evening) for the first month, then 10 per day after that. Many people continue the 20 grams per day instead of cutting back to ten. The study at St. Luke's /
Roosevelt Medical Center in New York is now using 30 grams per day, 15 in the morning and 15 at night.

To be effective, AL 721 must be taken on an empty stomach. No fats, and preferably no other food, should be taken for at least two hours before and two hours after. A fat-free breakfast one hour or more after the morning dose may be OK. People usually take AL 721 before going to bed at night, and early in the morning.

The experts believe that AL 721 will be most effective if thoroughly dispersed in water, as with a blender. (The St.
Luke's study uses 10 ounces of chilled orange juice, which may be better than plain water.) Use the blender at least until no lumps remain. If you use warm water to soften the lipids first so that they can be mixed more easily, keep the temperature below 115 degrees F, as higher temperatures may affect the material.

What we have found most convenient is a pocket-size battery powered drink mixer, such as the one from VitaMinder in Laguna Niguel, CA, sold for about $7. in health-food stores. It mixes one glass at a time, is easy to clean, and is much quieter than regular blenders so it doesn't wake housemates if used at night. Others prefer a larger, plug-in appliance such as the Braun hand blender, which costs about $25; it also can mix a drink in a large glass and is easy to clean.

AL 721 spoils rapidly after it has been mixed with juice or water, so it should be used immediately, and never later than half an hour after mixing.

Dividing the Bulk Product

If you get AL 721 in bulk, usually in a kilogram jar, you need to divide it into doses. It might not work to just scrape
some of the frozen material out of the jar (1 tablespoon equals 12 to 13 grams), because some products tend to separate while being frozen, so the top and bottom of the jar could be different. Follow the manufacturer's suggestions.

If you do need to divide the product, read whatever instructions came with it. The lipids will have to be warmed
enough so they can be thoroughly mixed and poured; avoid getting air into the mixture. Most people pour the kilogram into a cake or cookie pan, re-freeze with the pan covered and level in the freezer, then cut the frozen lipids into individual doses with a knife, and wrap each dose in aluminum foil or plastic like Saran Wrap. For example, one kilogram carefully divided into ten rows and ten columns gives 100 equal doses, of ten grams each.

Possible Side Effects

There is no known toxicity of AL 721. And since this substance consists entirely of ingredients found in ordinary egg
yolk, toxicity would be unlikely.

The only serious concern is the possibility of a "rebound effect" if the treatment is stopped suddenly. In the St. Luke's
study, three of eight patients progressed from serious lymphadenopathy to AIDS within 20 weeks of stopping AL 721.
Physicians feared that the treatment may have held the disease in check, so that suddenly withdrawing it could allow the condition to get worse for a time than it would have been without the treatment. Physicians now recommend that people not start AL 721 unless they plan to continue until more is known or a better treatment is available.

There are no known problems in combining AL 721 with other drugs, but persons should check with their physicians. There has been some concern that AL 721 might interfere with AZT, making the latter less effective. Two physicians debated this question in a recent issue of the PWA Newsline (July/August 1987 issue, available from the PWA Coalition in New York, 212-627-1810). A number of people are using both treatments together, and we have not heard of any problems.

Too much lecithin can cause minor side effects such as nausea or diarrhea, and possibly mental depression; these go away if the dose is reduced. A review of possible dangers as well as medicinal uses of lecithin (Wood and Allison, 1982) concluded that lasting health hazards were unlikely, as the unpleasant side effects of excessive use would cause people to stop before serious harm was done. (However, animal studies have indicated that large amounts of lecithin taken by pregnant women may be harmful to the fetus; see Bell and Lundberg, 1985.)

Technical Background in Part III

The third and final part of this article will cover the more technical information:
Surveys of AL 721 users
Technical background, how AL 721 works
Viral hepatitis treatment with phosphatidylcholine
The soy lecithin "home formula"
Technical references

A book on AL 721--How You Can Help

Arthur Kahn, a retired classics professor in New York, is writing a book about AL 721 and wants to hear from anybody with first-hand knowledge of it, especially about it's history and development. He is doing an excellent job of research, and has already traveled to Israel and elsewhere to interview leading scientists.

You can call him at (718) 237-1962.

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