Search MedicalCannabis.com
 
Patients Out of Time recognized by Cannabis Health Journal as Best Patient Advocacy Organization

Al Byrne is co-founder and Secretary-Treasurer of Patients Out of Time, a national non-profit devoted
to educating health care professionals and the general public about the therapeutic uses of marijuana.
 
  The story originally ran in Issue 3-3, Mar/Apr 2005 page 18,19, and 20
The first five patients in the US who received their cannabis medicine from the federal government were featured speakers at the National Organization
for the Reform of Marijuana Laws’ (NORML) annual conference held in Washington, DC in 1990. The prime movers of that conference were two members of its Board of Directors, Al Byrne and Mary Lynn Mathre, RN.
A fellow member of the Board made a call to a friend at C-Span, the local civic orientated TV channel that is broadcast nationwide, suggesting this conference was worthy of its attention. They agreed and broadcast the entire conference live and repeated the entire program on several occasions.

Forty thousand phone calls poured into the NORML offices that month.
The patients had put a new face on marijuana. These were not the stoner hippies so often portrayed in the press, but men and women with gray hair, soft words and serious illnesses. They were everybody’s dad, grandmother or son and the US government provided them with their medicine. The callers were from all over the country, supportive, and wanted to know more about “medical marijuana.”

After working together informally for a few years, the five federal patients and health care professionals with expertise in clinical cannabis applications, formalized their work by incorporating as Patients Out of Time, co-founded by Mathre and Byrne, in the spring of 1995. The organization’s mission was and is to educate health care professionals and the public about therapeutic cannabis.

To execute the mission the organization decided to approach national professional organizations that were health care focused or had national significance in related fields. Individual MD’s, RN’s and other professionals we had all dealt with over the years were almost universally supportive of medical cannabis but only in private. To overcome the obvious intimidation that had infiltrated medical conversation of individuals publicly, we concluded that a professional organization, taking a supportive stand, would offer personal protection to each member and grant the issue the prestige of the organization.

Mary Lynn Mathre, “ML”, had made the first such presentation to the Virginia Nurses Association in 1994 and they passed a Resolution in support of medical cannabis, the first nursing organization to do so. Over the years the list of support groups has grown to dozens. It includes the oldest and largest health care organization in the US, The American Public Health Association; the American Nurses Association; thirteen state nursing associations; and the Institute of Medicine.

To maximize our educational effort we created tools for other patient advocates to utilize. Our first project was to produce, Marijuana as Medicine, an eighteen-minute award winning video (US and Canada) that has been viewed thousand of times in over 20 countries. This video again reinforced the true image of the patients as everyday folks who were ill and used cannabis successfully as medicine. In their own words they told their stories of sickness, prescription drugs, operations, depression, oncoming blindness, and then the reversal of all those negatives when they started on a protocol of therapeutic cannabis.

The second tool was Cannabis in Medical Practice: A Legal, Historical and Pharmacological Overview of the Therapeutic Use of Marijuana, edited by Mathre and contributed to by seventeen experts from Brazil, The Netherlands, Jamaica and the United States. This book was created to answer the questions that were being asked by hundreds of patients, to assist their caregivers in understanding the full spectrum of therapeutic cannabis use and to provide hundreds of references should the reader wish to learn more. It has become a classic in its field and continues to be referenced.

By the end of the nineties the awakening provided by C-Span had blossomed into a full-scale awareness that the US government policy on medical cannabis was at best, misguided. To us it seemed just plain mean, based on a relentless propaganda machine that just lied about the issue. The public seemed to agree. Over the decade polls about medical cannabis efficacy and medical necessity climbed from the low 40’s to the mid 70’s, even into the 80 percentile in some states.

In order for research to be considered of merit it must be replicated and peer reviewed. The results must be made public, scrutinized, and validated. To overcome any federal government dialog that indicated that such research did not exist we started a series of clinical cannabis conferences beginning in 2000.

The first such meeting was sponsored by the College of Nursing and the College of Medicine of the University of Iowa.
This sponsorship was critical to our work. It enabled the agenda to be accredited for professional education for MD’s, RN’s, SW’s, JD’s and other professionals. To be so honored the faculty and the presentations had to meet the highest of academic standards. All conferences in the series have received this accredited status. The entire conference was broadcast live to various locations including McGill University in Canada and to the health education network of the State of Oregon. The faculty was of the highest quality; the press response supportive and the studies were presented under the theme of Science Based Clinical Applications – this formed a benchmark of knowledge from which there has been no retreat.

Our second conference was sponsored by the Health Department of the State of Oregon, the Oregon Nurses Association and other groups. The faculty included a number of speakers from European countries and we involved the hemp community in the proceedings by discussing the positive impact on health that cannabis used as food, hemp, proffered for sick and well alike. The main focus of this forum was to discuss pain of all types, since over 70% of the Oregon patients reported pain relief as their primary purpose for the use of cannabis.

The Third National Clinical Conference on Cannabis Therapeutics was held in May of 2004 in Charlottesville, VA.
It was co-sponsored by the Virginia Nurses Association, the Pain Management Center and the Medical, Law and Nursing Schools of the University of Virginia, known in the US for its conservative ways. The faculty included the world’s finest cannabis researchers, clinicians, patients and caregivers from the US, England, Israel, and Canada. At this venue cannabis use as medicine ranged from the therapeutic use by infants and children to use with Hospice patients.

Our Board of Directors includes four of the seven US federal cannabis patients left alive, Irv Rosenfeld, George McMahon, Corrine Millet and Barbara Douglass and a fifth patient, Elvy Musikka, is our national spokesperson (the other two patients wish to remain anonymous). In the spring of 2001 in Missoula, MT, four of the patients underwent an extensive three-day examination of every system in their body to determine the long term effects of cannabis. Known widely as The Missoula Chronic Use Study, the investigators concluded that after using cannabis therapeutically for a range of 11 to 27 years, with a dose of nine cured ounces per month for Barbara and others, and eleven cured ounces every 26 days for Irv, they were all in fine condition exempting their original illness and the wear and tear of age. We assume that the federal government never bothered to conduct such long-term studies because it did not want to scientifically validate the efficacy of cannabis. A thorough review of the study, Chronic Cannabis Use in the Compassionate Investigational New Drug Program: An Examination of Benefits and Adverse Effects of Legal Clinical Cannabis was published in the Journal of Cannabis Therapeutics and is available for review here: PDF File

An ongoing action of which we play a part is the Petition to Reschedule Cannabis that has been submitted to and forwarded by the US Drug Enforcement Administration (DEA) to the US Department of Health and Human Services (HHS). The petition, presented as required by government regulations, requests a complete review of all existing literature and research by HHS concerning medical cannabis with the purpose of having cannabis rescheduled to a minimum of schedule three (“off label” prescription level) or less. The complete document is available at www.drugscience.org. The review must be completed no later than the summer of 2007 by HHS rules. Under US law a finding by HHS that cannabis has medical use would require the DEA to reschedule cannabis. The war on cannabis in the US for medical use would be over. Advocates for medical cannabis in the US are being asked to request their elected representatives to press for an expedited review.

Patients Out of Time is not a membership organization. We are a volunteer cabal of patients, clinicians and scientists who work in the cannabis arena. We depend upon donations from individuals and grants from companies and foundations for our financing. These have included GW Pharmaceuticals of the UK, Advanced Nutrients of Canada, and the Marijuana Policy Project and Solvay Pharmaceuticals of the US. One hundred percent of the donations are expensed for education. No one takes a wage and no speaker has ever asked for an honorarium. We strive to present ourselves as pure to the issue.

We think that purity is very important and it is highly recommend that our Canadian cohorts give that look some thought. Our official policy statement is clear: “Patients Out of Time has no other interest, nor does the organization have any opinion, stated or unstated, about any issue other than therapeutic cannabis.” No one is confused about whom we represent or what we want and the federal government has found that disarming. No member of the federal government has ever risen to our call to debate us. The reason is obvious. They can call us no name except “patient advocates” and we would win.

We also believe that the manner of publicly presenting the therapeutic cannabis argument in the US is now counterproductive. Since the beginning of the 1960’s when cannabis had escaped from the jazz world in the US south and major cities; migrated from the dens of the beatniks in Harvard Square; and began its journey through the high schools and colleges of the US, the press, the government, even sometimes by the advocates themselves, users of marijuana have been presented as young, rebellious, dumb and of little value.

A parallel line to this canned image of a marijuana user is the representation of these patients by the legal community.
The talk shows, political wisdom programs, even “specials” dealing with medical cannabis feature a lawyer or a lobbyist discussing medical use. This is not only an ineffective visual message it is the wrong silent message as well. Our organization believes that the primary representative who should “face the camera” in discussions concerning medical cannabis is a health care professional. This is our basic criteria and we would like you to consider adopting it in Canada. This is a health issue not a legal issue. A health issue should be discussed and defended by a person trained in that expertise, and have the practical experience and command of the state of the art science to do the argument justice. Lawyers and lobbyists are not acceptable under that standard. Health care professionals are available and should be utilized by the funding and lobbying efforts in both countries. Medical professionals such as Drs. Ethan Russo, Denis Petro, Mark Ware and Juan Sanchez-Ramos, Registered Nurses such as Dr. Dreher and M.L. Mathre and specialists like Michael Aldrich PhD are all part of our group and available for the asking. There are others besides Dr. Ware who are in Canada and would present the patients’ case equally well. If you have the opportunity in the future to arrange any press event for medical cannabis please consider this advice.

Our next major project is The Fourth National Clinical Conference on Cannabis Therapeutics to be held in Santa Barbara, California in a little over a year, hosted by City College of that location and accredited by California health organizations. The dates are April 5-8, 2006. The theme of the conference is: The Body-Mind Connection. While various aspects of clinical use will be covered, the core of the forum will involve both physical cannabis treatment and the use of cannabis for PTSD, ADD, depression and other emotional or psychological problems.

We would welcome a Canadian counterpart to our educational mission but until that time we are providing a venue for cannabis science through our clinical conference series. We have changed the media face of a cannabis patient in the US forever by presenting a dignified, composed and articulate cast of patients. We have elevated the level of discourse about therapeutic cannabis through the education of health care professionals and their organizations and associations. We will not give up or grow weary of making therapeutic cannabis available for all patients. We can’t, we are Patients Out of Time.

 
Here is the Cannabis Health Journal that this article appeared PDF (1.78 MB)
 

Press and journalist contact: Al Byrne
ph (434) 263-4484 fax (434) 263-6753
Al@medicalcannabis.com

 
   
 
  back