Last March the three of us received our 15 minutes of fame. The National Academy of Sciences' Institute of Medicine (IOM) featured our medical case histories in its landmark report, "Marijuana and Medicine: Assessing the Science Base." IOM included us as three living examples to illustrate its conclusion that "there are some limited circumstances in which we recommend smoking marijuana for medical uses."
One of us, Greg, smokes marijuana to treat nausea and appetite loss caused by AIDS. Barbara uses it to treat pain and muscle spasms caused by multiple sclerosis. Jim needs it to treat nausea from liver disease and the pain and spasms caused by reflex sympathetic dystrophy.
Each of us has experienced tremendous suffering. We know what it's like to be overcome by nausea so severe that one has to leave the dinner table to vomit. We've felt pain more agonizing than we'd ever imagined possible. We've been unable to walk, whether from muscle spasms or from being literally on our deathbeds.
Marijuana has helped us. It is not a cure, but it greatly reduces our suffering, permits us to move around and enables us to eat.
There is one major difference among us: Barbara is one of eight patients in the entire nation who have permission to use medicinal marijuana through a federal "compassionate use" program, which has been closed to all new applicants since 1992. Greg and Jim are not so fortunate--we risk spending a year in federal prison every time we light a marijuana cigarette.
IOM recognized that we--and countless others like us--should not be punished for using marijuana to alleviate suffering. The report recommended that the federal government open a compassionate-use program to give seriously ill people immediate legal access to the substance.
IOM's findings gave us hope. Soon, we thought, the U.S. Department of Health and Human Services (HHS) would change federal policy so that thousands of patients nationwide would be able to stop worrying about being arrested.
But we were mistaken. HHS's new medicinal marijuana research guidelines took effect last month, and to our shock, they explicitly rejected IOM's recommendation to allow individual patients to apply for permission to use medicinal marijuana.
When the federal government commissioned the IOM report in 1997, the stated purpose was to receive guidance on what to do about medicinal marijuana. Was it too much to expect the HHS would implement IOM's recommendations?
Moreover, HHS's new research guidelines place a much greater burden on medicinal marijuana researchers than on drug companies that develop and study newly synthesized pharmaceuticals. It is simply too difficult for researchers to conduct the kinds of studies needed to obtain FDA approval of marijuana as a prescription medicine.
This isn't just our opinion. A statement urging HHS to modify its new guidelines was signed by a range of organizations including the AIDS Action Council, the National Association of People With AIDS, the California Pharmacists Association and the National Black Police Association. The coalition argues that "many of the new guidelines would still be too cumbersome to enable research to move forward as expeditiously as possible" and that patients who are already using medicinal marijuana should not have to live in fear of being arrested.
We hope HHS takes heed. Our lives depend on it.
Greg Scott lives in Florida, Barbara Douglas in Iowa and Jim Harden in Virginia.