The Empty Pot : U.S. Draws Criticism for Decision to Halt Little-Known Program to Distribute Free Marijuana to the Seriously Ill

FULLERTON —  Gary Romero says he’s never been much of a rabble-rouser, and he’s not much of one now, even as he talks of a government quietly going back on its promise to give him marijuana to help him fight AIDS.

Certainly there is indignation in his voice, but it is softly spoken, edged with fear. None of this, he says, makes any sense.

“The government, to me, shouldn’t have the right to tell me that I can’t feel better now,” he said of Washington’s recent move to end a little-known program of supplying marijuana to the seriously ill.

Romero was discovered to have AIDS three years ago this July. Illegal marijuana, he said, is the reason he is still alive, why he has not “wasted away” like so many others who have traveled this path. It stimulates his appetite, he said, calms his nausea, helps him to sleep.

Romero’s T-cell count, that grim immune system gauge that AIDS patients use to weigh their chances of staying alive, is 20. A healthy person’s stands in the range of 1,000. Still, Romero’s weight is within the normal range for his height. He hasn’t had a cold for a year.

“I think people should know about us being denied (legal marijuana) and how it really helps me,” he said.

Then he lights a half-smoked marijuana cigarette that he rolled earlier in the morning and doses himself with four quick hits. Romero, a former Marine and computer software salesman, said he is planning on turning 40 next month.

“I am careful to only keep enough here for my own personal use,” he said warily from his Fullerton home. Yet he lives in fear of eviction and, possibly, arrest.

Last year, the federal government agreed with Romero and his doctor that marijuana, for him, was a good thing. The Food and Drug Administration approved his application to smoke marijuana for medical reasons, and within 30 days issued him a so-called Investigative New Drug number, 36288.

It said Romero could get free marijuana from the government, grown at a research farm in Oxford, Miss. The government is barred from selling illegal drugs.

Then after months of going back and forth with three government agencies, the National Institutes of Health called Romero’s doctor three weeks ago to tell him that marijuana would no longer be supplied through the Compassionate IND Program. So Romero never got his free pot. The government’s reason: Smoking marijuana is bad for people’s health.

The Public Health Service, which is under the aegis of the Department of Health and Human Services, says THC, the mind-altering substance in marijuana, is available in pill form and that this should be used instead.

But many patients and their doctors say that the costly pills, available since 1985, don’t work as well, if at all. Patients with severe nausea have trouble keeping down swallowed medication.

The policy change on medical marijuana use came to light March 10 during a routine news briefing by a Public Health Service spokesman. A week later, the Drug Enforcement Agency said marijuana would remain classified as an illegal drug with no accepted medical use.

But Romero is not the only one left out by the move. The FDA had approved legal marijuana use for at least 27 other seriously ill or disabled Americans before the government said, in essence, that it had changed its mind.

“There was quite a bit of discussion about whether we should go back on our word to these 28 people,” Public Health spokesman Bill Grigg said. “But then we said, ‘Heck, if this is harmful to additional people, isn’t it better to go back on our word?’ ”

All of the people approved for legal marijuana use suffer from cancer, glaucoma, AIDS, multiple sclerosis, paralysis and other disorders. Many are dying; all experience pain. Marijuana, they and their doctors report, soothes their nausea, their spasms, holds off blindness, stops their pain, stimulates their appetite and keeps up their weight.

Grigg said there are 13 other patients who were already receiving marijuana through the program before the review and that they will still be supplied. These patients, however, are wary.

“The government has turned compassion into a cheap con game and patients have been suckered into it,” said Bob Randall, head of the Alliance for Cannabis Therapeutics in Washington, who is also legal marijuana user No. 1.

Randall successfully sued the government for the right to smoke marijuana to treat his glaucoma 15 years ago. As part of the settlement of Randall’s case on appeal, the Compassionate IND Program was put into place.

It was the arrest of Kenny and Barbra Jenks, the first AIDS patients to be supplied with government marijuana, that most recently drew attention to this problem. Kenny Jenks, a hemophiliac who contracted AIDS through a blood transfusion, infected his wife before he knew he had the disease.

Narcotics agents broke down the door of the couple’s home in Panama City Beach, Fla., held them at gunpoint and arrested them for growing two pot plants. The Jenks’ 1990 marijuana conviction was reversed on appeal and the appellate decision was upheld by the Florida Supreme Court.

AIDS patients especially were intrigued by the Jenks case. Many of their physicians began applying to the FDA for legal access to the drug.

Did the government really want to get into supplying marijuana on a potentially grand scale? Government officials concede that they were concerned about the message that this would send. Marijuana, in the government’s official view, is no different than LSD and heroin, all listed by the DEA as Schedule I.

Cocaine, on the other hand, is classified as a Schedule II drug, which while still illegal to the public, means that doctors may prescribe it for medical use. Eye surgeons do exactly that. A Schedule II drug, which also includes morphine and methadone, is more readily available for research purposes as well.

This is a situation that patients such as Romero describe as a Catch-22. Although anecdotal evidence on marijuana’s medical usefulness has been compiled for years, they say, the government, despite several court decisions supporting its therapeutic use, has consistently taken a hard line against the drug.

Many doctors do not like to discuss its medical uses at all.

“I have asked 10 doctors to help me apply to get marijuana legally,” said Montica Fankell, a quadriplegic in Yucaipa, Calif., who like many other paralyzed Americans smokes marijuana to control spasms and pain.

“None of them would,” Fankell said. “Even if they are interested, they finally decide that it is too much red tape.”

In 1988, Francis Young, the DEA administrative law judge, ruled that physicians should be allowed to prescribe marijuana for their patients, adding that it would be “unreasoning, arbitrary and capricious for DEA to continue to stand between those sufferers and the benefit of this substance.”

“In its natural form,” the judge said, “(marijuana) is one of the safest therapeutically active substances known to man.”

The DEA refused to follow Young’s recommendations and last year a federal appeals court ordered the DEA to reconsider. DEA Administrator Robert Bonner did that last month, basing his decision on the same testimony and documents that Young used. But he reached the opposite conclusion.

Bonner said marijuana was probably more carcinogenic than tobacco, that it damages brain cells, causes lung problems, dizziness and fatigue, muddles thinking, lowers blood pressure and impairs motor skills.

Many physicians who treat the seriously ill say that regardless of marijuana’s social stigma, there are too few reliable studies on the drug’s effectiveness to determine whether it would be useful in patient treatment plans. A surprising number, however, are apparently willing to take a chance.

In a study published in July in the Journal of Clinical Oncology, two Harvard researchers found that 44% of surveyed cancer specialists had recommended that patients smoke marijuana to relieve chemotherapy nausea; 48% said they would prescribe it in some cases if it were legal to do so and 54% said they supported this change.

The American Cancer Society, while supporting further research, said it does not favor making marijuana available as medicine. The American Medical Assn. takes a similar stand.

In an indication of a possible softening of that position, however, delegates to the California Medical Assn.’s annual House of Delegates meeting in Anaheim last month, passed a resolution calling for a comprehensive study to determine when prescribing marijuana for patients might be beneficial.

But all of this, Romero and hundreds of other patients say, takes more time than they have to spare. They say they will remain criminals by smoking marijuana outside the boundaries of the law.