Hartford Advocate, January 20, 1994 - January 27, 1994
Janet Reynolds

Not only that but the chemical is nontoxic, it's cheap--a truckload could dose entire Third World countries--and it's easy to administer.

It's also unpatentable and that, say AIDS activists, is why dinitrochlorobenzene, commonly called DNCB, has largely been ignored by the medical establishment and the federal government for almost a decade. Because when something is unpatentable--DNCB has been used in color photography and air conditioning, among other things, for decades and can be bought without a prescription--there's no money to be made. And if there's no money to be made, America's pharmaceutical conglomerates. which fund most of the medical research that takes place in this country, aren't interested. And if pharmaceuticals aren't interested, neither are the feds.

At least not until recently. After years of being pestered by DNCB proponents the National Institutes of Health last month began the first DNCB clinical trial in Oregon. The pilot will follow a little over 40 HIV patients for six months.

But regardless of what that trial proves-and it may be too small and too short to prove anything-the NIH and others in the medical establishment who are DNCB skeptics maintain that money has nothing to do with why the chemical has long been ignored. The reason no one wants to study DNCB, they say, is simple: There's nothing to study. The chemical is probably about as useful in treating HIV as garlic was in warding off the plague.

Maybe yes, maybe no. But there are some who wonder, given the failure of AZT and similar drugs to help relieve the progression of this deadly disease, why any treatment, especially one with such a long history, isn't being taken more seriously.

In the meantime San Francisco ACT-UP isn't waiting around. This month the group begins a national DNCB education and distribution campaign. "We know this stuff works," says ACT-UP spokesperson Michael McEntee. "We have to get this out for people."

Still even McEntee admits most of the "proof is anecdotal. Somebody knows somebody else who almost died until he started using DNCB. McEntee admits as well that DNCB is not an AIDS cure. Instead it enables people to manage the HIV virus much the way insulin enables people to manage diabetes.

McEntee acknowledges that ACTUP's interest in DNCB is a 180 degree turn from its original interest in AZT, a more traditional treatment now generally recognized as a failure amongst many in the medical community. But the understanding of what makes the HIV virus tick has changed since the days when AZT was hailed as an AIDS wonder drug. New drugs and treatments must be explored-now.

"We're not saying DNCB is the answer," McEntee says. "DNCB is the answer right now. Right now there's nothing better out there. All you've got to do is look at your obits," he adds, "and you know the old way don't work."

Or you can talk to people like Jim Henry. In 1988 Henry, who lives in San Francisco, was diagnosed with AIDS. He'd tried the more traditional treatments--AZT, DDI, acyclovir, et al--but nothing worked. He lost 45 pounds, his T-cell counts (key indicators of how well the immune system functions) were practically nonexistent, and he was hospitalized with Pneumocystis carinii pneumonia. He was told he had about three months to live.

Enter DNCB. Figuring he had nothing to lose, Henry stopped all the other traditional medicines and started swabbing DNCB on a patch of his skin once a week. Today Henry says he's 40 pounds heavier, his T-cells are within normal range, and he's never been back to the hospital.

It's a remarkable story that would be all too easy to dismiss, except for this: The National Institutes of Health (NIH) has biopsied Henry's lymph nodes and discovered that although the lymph nodes are damaged, they are not as ravaged as the lymph nodes of other AIDS patients. In other words, something--Henry would argue it's DNCB--has kept them going.

And the cost of this lifesaving chemical? About $20 a year, and that, according to Henry, includes Q-tips, bandaids and soap to wash it off. "Anyone could mix this up at home,'' he says.

Now while one man's story does not a wonder drug make, it's certainly enough to give people like Shelley Goldschlager of Canton hope. Like Henry, she had tried the more traditional route. A former crack addict who became HIV positive after unprotected sex with her lover, Goldschlager at one time was spending about $200,000 a year taking countless prophylactic drugs and her T-cells counts were still lousy. This past August two things happened. Goldschlager got fed up. "I said, 'Fuck this,"' she says. And she had a visit from Dr. Drugs.

A childhood friend, Dr. Drugs (a pseudonym he uses so he won't get grief for supplying people with DNCB) gave Goldschlager her first vial of DNCB. "'Shelley,' he said, 'I have a gift for you," ' she recalls, "and then he hands me this stuff. He told me not to worry about my bloodwork but just to keep using it."(She's due for her first major bloodwork since starting DNCB in a couple weeks.)

An act of blind faith, no doubt, but one which at this point is duplicated by absolutely everyone who takes DNCB (an estimated 5,000 to 10,000 nationally). Why? Because with the exception of the small pilot study now going on in Oregon, there has never been a large scale DNCB clinical trial in this country.

AIDS activists like Blaine Elswood insist they know why. Money. An AIDS researcher who has helped Henry set up guerilla clinics to distribute DNCB, Elswood says, "Anything that can't be owned or marketed for profit is lost in this medical system. Nobody can make money off DNCB and [pharmaceutical companies] want to make money off whatever they've developed no matter how infeasible it is.

It defies our for-profit distribution system," Elswood adds, noting users can mix and administer DNCB themselves and that they need less of it the longer they use it. "The only way DNCB will be approved will be if there is a complete change in the system."

The feds, of course, disagree. Arthur Whitmore, a spokesperson for the federal Food and Drug Administration, admits DNCB is not a potent money-maker, "but it's my belief that this would not mitigate the government from going full speed ahead if it proved any effectiveness."

Pharmaceutical companies, meanwhile, would undoubtedly maintain they're not raking in the bucks selling more traditional drugs. After all it costs millions of dollars to research a drug before it's put out on the market. But one thing is sure. Where a month's supply of AZT costs about $150, DNCB costs about $4 a vial. And a vial can last a very long time.

Interestingly, AIDS activists aren't the only ones who feel DNCB deserves a closer look. A number of doctors, some of whom already use the chemical in private practice, would like to see further studies as well.

Some, like Dr. Ray Stricken the associate medical director of HemaCare Company in California, have a vested interest in the chemical. Stricker began a DNCB pilot study in 1990 and only this year received enough funding to do follow-up work on the 24 patients.

"We haven't had drug companies running to give us money," he says of the study's stop-and-start history. "It's not a conventional treatment and a lot of the medical community has no interest in that.'

Stricken meanwhile, is excited about what his follow-up has uncovered thus far. Of the 16 who've continued to use DNCB, two have Kaposi's Sarcoma (a form of skin cancer) in remission. Of the eight who stopped using DNCB, three have died of AIDS. "That's a pretty significant difference in terms of outcome," he says while noting that the study is very small. He also says he's noted a significant increase in CD8 cells and natural killer cells, both of which are considered the immune system's backbone.

Even doctors without as direct a link to DNCB's success feel DNCB deserves a closer look. Dr. Cecil Fox, a former NIH researcher and the man credited with discovering how to measure the amount of HIV virus in human tissue, is one such doctor.

He starts by first noting that the pro-DNCB gay community is no different from any other SV drug trial. They all usually end up with cheering sections. "They're convinced the only thing that's keeping them alive is Drug X," he says, noting that the only "proof" is that no one they know has died while taking it. "It's like watching a group of hysterical 12-year-olds," he adds. "They have a phenomenon but don't have the tools to study it."

Which doesn't mean Fox dismisses DNCB as purely hype. "Of course," Fox says in answer to a question about the validity of researching DNCB further. "DNCB is easy. It's like studying the effect of a sledgehammer on a block of cement. It's a powerful agent."

Just don't get the idea that it'll be easy to figure out exactly how-- if at all--DNCB works. The HIV virus is a tricky one. What researchers do know is that DNCB belongs to a group of agents capable of modifying the immune system in some way. Exactly how is unclear, but practically everyone agrees that the immune system and cell-mediated immunity is the key to unlocking the HIV virus mystery. What DNCB seems to do is reactivate the immune system by creating a skin reaction not unlike poison oak on the skin where it is dabbed. That means every time the rash is induced, the immune system kicks into action, destroying infected cells and any viruses they may carry along the way. And HIV is often a hitchhiker virus.

But the bottom line is that no one may ever know whether DNCB is as great as AIDS activists claim or just the latest in AIDS medical quackery if no one studies it in depth. And at the rate the federal government is going there could he plenty more AIDS deaths before that occurs.

The Food and Drug Administration says it's up to the National Institutes of Health to determine if DNCB is viable. In the meantime, FDA spokesperson Whitmore says there isn't enough evidence to warrant costly large scale clinical trials. He cites the September 1993 issue of AIDS Treatment News as the FDA's main reason.

Indeed, the article, written by Dave Gilden, is fairly anti-DNCB. While noting that mounting evidence does suggest some kind of cell-mediated immunity-which proponents claim DNCB affects-is vital to maintaining health during HIV infection, the article questions the protocol used in Stricker's study.

And it concludes, after examining evidence both pro and con DNCB, by noting: "Until there is some solid information on effectiveness, people should know that, reports of DNCB's enthusiasts aside, there is little to indicate who might benefit from DNCB and under what circumstances. The treatment is cheap and appears largely safe, at least if used under expert supervision, but you take it at your own risk. It would be foolhardy to give up other treatments and put all your hopes in this one."

At the same time, the NIH, while finally showing some interest in DNCB, isn't exactly racing to check it out. If the size of the NIH's first pilot study is any indicator, DNCB rates near the bottom of the medical barrel. Where current breast cancer studies, for instance, call for several dozen thousand medical volunteers, the pilot study at the Portland, Oregon, Kelly Avenue Clinic is monitoring the effects of DNCB on a little over 40 HIV patients for a total of six months.

The country's leading AIDS authority, Dr. Anthony Fauci, who directs the AIDS program at the NIH and is the director of the NIH's National Institute of Allergy and Infectious Diseases, was not available for comment by press time, despite a week of repeated phone calls. He did, however, tell AIDS Treatment Nests that the NIH is interested in studying people who are taking immune stimulants such as DNCB. "When people have a positive experience, it makes a drug interesting," he said, "although such experiences happen with many drugs that ultimately don't pan out."

Even the clinic's director anticipates the study will show DNCB has only a minor effect. "Unless we show a dramatic response, it may not be a priority item and rightfully so," Mark Loveless says, "if it only does a little good."

It's a point with which AIDS activists obviously disagree. "We can treat the world,''says Billi Goldberg, an AIDS researcher. "If we're right, people are dying because the government is letting them die."

And so, there remain many out there for whom the risks seem well worth it, people like Goldschlager. "I feel left out in the cold. It's profits over people," she says. "People's lives are hanging on the line. who cares?"

Copyright (c) 1994 - The Hartford Advocate. Permission to reproduce granted.
940120
HA940101

Copyright © 1994 - Reproduced courtesy of copyright owner - listed on source line.

AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, the National Library of Medicine, Pacific Life Foundation and donations from users like you.

Always watch for outdated information. This article first appeared in 1994. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980 – 1994. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .