Who Are the Patients Receiving Medical Marijuana through the Federal Government's Compassionate IND Program?


General Reference (not clearly pro or con)
Eight known* Compassionate Investigational New Drug (IND) patients, four of whom are still living as of Apr. 18, 2014:

Name of Patient
(in alphabetical order)
Diagnosis Date Entered
IND Program
Marijuana Dosage Per Month
(One cured ounce is about 40 cigarettes)
Status
(as of Apr. 18, 2014)
1. Douglass, Barbara Multiple Sclerosis Aug. 30, 1991 Nine cured oz (360 joints) Active program participant
2. Jenks, Barbra AIDS Feb. 19, 1991
(1st shipment)
Unknown Passed away Mar. 28, 1992
3. Jenks, Kenny AIDS Feb. 19, 1991 (1st shipment) Unknown Passed away July 19, 1993
4. McMahon, George Nail Patella Syndrome Mar. 16, 1990 Eight cured oz (320 joints) Active program participant
5. Millet, Corrine Glaucoma Nov. 16, 1990 Four cured oz (160 joints) Passed away Dec. 2007
6. Musikka, Elvy Glaucoma Oct. 17, 1988 Eight cured oz (320 joints) Active program participant
7. Randall, Robert Glaucoma Nov. 1976 Unknown Passed away June 2, 2001
8. Rosenfeld, Irvin Multiple Congenital Cartilaginous Exostoses Nov. 20, 1982 Nine cured oz (360 joints) Active program participant


*There were also two anonymous patients in the program whose names were witheld by request. These two patients are thought to have passed away based on evidence presented below, although their status cannot be confirmed due to their anonymity.

[Editor's note: ProCon.org contacted the National Institute on Drug Abuse (NIDA) - the government organization that has supplied marijuana for the Compassionate Use IND program since it began on May 10, 1978 - several times in Mar. and Apr. 2008 to verify the status and number of patients in the program. On May 10, 2008 we received an email from NIDA Press Chief Dorie Hightower stating:
"NIDA is not in charge of this program in any way. All we do is ship mj [marijuana] to appropriately registered physicians on behalf of their patients. We have no way of knowing how many are actively receiving mj."

ProCon.org called or emailed the US Food and Drug Administration (FDA) - the government organization that approves all IND programs - on May 12, 13, 14, 21, 28 and 29, 2008. We received an email from FDA spokeswoman Rita Chappelle on May 21, 2008 informing us they would not answer our requests for information and instructing us to call their consumer line, which we did. Katherine Chew returned our message and further declined to provide any information about the FDA's involvement in this program. A follow up email from ProCon.org to the FDA ombudsman and drug information email address was answered on June 3, 2008 by FDA spokeswoman Crystal Rice:
"I regret that you've been faced with some difficulties in communicating with and receiving information from our agency. However, I must reiterate the statement made by one of my colleagues that any investigational new drug application information is proprietary and must come from the sponsor.

In regard to 'medical' marijuana, in general, here is our most recent agency statement: Inter-Agency Advisory Regarding Claims That Smoked Marijuana Is a Medicine."

Read more about this federal program in our question: "What is the US government's Compassionate Investigational New Drug (IND) program for medical marijuana?"

See videos of some of the patients on our YouTube playlist "Medical Marijuana: IND Patients."]

- Liliana Bachs, MD 

The Marijuana Policy Project (MPP) wrote in a May 6, 2008 press release titled "Federal Medical Marijuana Program Marks 30th Anniversary on May 10":

"The federal medical marijuana program -- referred to as a Compassionate Investigational New Drug (IND) program -- resulted from a lawsuit filed by glaucoma patient Robert Randall, who successfully showed that his use of marijuana was a medical necessity.

The program slowly grew for over a dozen years. In the wake of a flood of new applications from patients battling AIDS -- who found that marijuana boosted their appetites and relieved the nausea often caused by anti-HIV drugs -- the George H.W. Bush administration closed it to new applicants in March 1992, but continued supplying federal marijuana to those already receiving it. Four of those patients survive today."

May 6, 2008 - Marijuana Policy Project (MPP) 

Karen O'Keefe, JD, Assistant Director of State Policies at the Marijuana Policy Project, wrote in a Feb. 8, 2008 email to ProCon.org:

"[T]here are now only four surviving patients in the federal IND program… The patients are:

Barbara Douglass, who has MS;
George McMahon, who has Nail Patella Syndrome;
Elvy Musikka, who has Glaucoma;
Irvin Rosenfeld, who has Multiple Congenital Cartilaginous Exostoses.

In May of 2006, my coworker contacted NIDA and was told five patients were surviving at that time. We knew them to be the above four and Corrine Millet. Corrine passed away in December."

Feb. 8, 2008 - Karen O'Keefe, JD 

Al Byrne, Secretary-Treasurer and co-founder of Patients Out of Time [POT], wrote in an Apr. 1, 2008 email to ProCon.org:

"[T]he federal IND for cannabis is now at the four patient level... The four are those studied in the 'Missoula Study' of 2001. All are active with POT [Patients Out of Time]. The medical cannabis provided, is not of medical grade and is grown at the University of Mississippi."

Apr. 1, 2008 - Al Byrne 

Ethan Russo, MD, Senior Medical Advisor at the Cannabinoid Research Institute, wrote in his Jan. 2002 article "Chronic Cannabis Use in the Compassionate Investigational New Drug Program: An Examination of Benefits and Adverse Effects of Legal Clinical Cannabis," (PDF 376KB) published in The Journal of Cannabis Therapeutics:

"The Missoula Chronic Clinical Cannabis Use Study was proposed to investigate the therapeutic benefits and adverse effects of prolonged use of 'medical marijuana' in a cohort of seriously ill patients approved through the Compassionate Investigational New Drug (IND) program of the Food and Drug Administration (FDA) for legal use of cannabis obtained from the National Institute on Drug Abuse (NIDA)... The aim [of this study] was to examine the overall health status of 8 surviving patients in the program. Four patients were able to take part, while three wished to remain anonymous, and one was too ill to participate. Unfortunately, that person, Robert Randall, succumbed to his condition during the course of the study. Thus, 7 surviving patients in the USA remain in the Compassionate IND program...

By 1991, 34 patients were enrolled in the program according to Randall (Randall and O'Leary 1998), while other sources cite the number as only 15. Facing an onslaught of new applications, the Public Health Service (PHS) in the Bush administration closed the program to new patients in March 1992...

The identities of 6 of 8 of the original Compassionate IND program subjects were known to Patients Out of Time."

Jan. 2002 - Ethan Russo, MD 
Chronic Cannabis Use in the Compassionate IND Program (375 KB)  

George McMahon, a patient in the Compassionate IND program for medical marijuana, wrote in his 2003 book Prescription Pot (cowritten with Christopher Largen):

"I am the 5th person who has won the battle to use an illegal drug for my medical problems…I won my battle enabling me to use the illegal drug for my medical problems. I am one of only 34 known medically ill individuals who have been approved to use marijuana legally in the U.S...

Prior to getting my first legal supply of marijuana on March 17, 1990, I used marijuana illegally for more than 20 years to help cope with the pain from an illness which wasn't diagnosed until a few years ago...

After numerous tests, evaluation and piles of legal papers, I received my first shipment of marijuana from the government's National Institute for Drug Abuse in March of 1990. I receive 300 cigarettes per month at no cost. According to printed material provided, the cost to the government for the marijuana provided the patients is very small. I go to a designated pharmacy and through two sets of locked doors to receive my supply of marijuana, which is then stored in a locked safe, which is closer to my home...

I feel lucky to be a legal patient. I don't feel guilty about my status, but I can't take for granted what so many other patients need and lack. Nevertheless, my health depends on a steady supply of medicine...The elevated mood associated with cannabis definitely affected my health in a positive manner. I was more engaged with life. I took walks and rode my bike, things I never considered doing before in my depressed state, even if I had been physically capable. I ate regular meals and I slept better at night. All of these individual factos contributed to a better overall sense of well-being."

2003 - Christopher Largen 
George McMahon 

Elvy Musikka, a patient in the Compassionate IND program for medical marijuana, wrote in a Jan. 13, 1997 letter to then-President Bill Clinton:

"I am patient no. 3 of 8 who today currently receives medical marijuana through the federal government of the United States...

By the fall of 1990, there were five legal recipients...

By 1991, I am aware of at least 50 patients who through extensive medical records, reputable doctors, and sometimes through courts -- such as in my case -- were able to convince all three drug-related agencies, FDA, DEA, and NIDA, that for us, marijuana isn't just medicine, it is the most efficient, reliable and safest part of our treatment and sometimes it is our only treatment. In the summer of 1991, the program was frozen. No new patients were given access to medical marijuana and the program was officially closed by the spring of 1992.

Unfortunately, 36 of those patients never did receive the promised marijuana from the government."

Jan. 13, 1997 - Elvy Musikka