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In Search of Truth: Patients Out of Time

Irv Rosenfeld is a walking, talking federal cannabis patient who is not being studied in any in-depth scientific fashion. Under the defunct yet functioning Compassionate Investigational New Drug Program, he benefits from one of the world’s oldest homeopathic remedies. Since 1983, he benefits from a can of 300 marijuana cigarettes every 25 days, care of the U.S. government. The Food and Drug Administration’s program for legal use of cannabis obtained from the National Institute on Drug Abuse (NIDA) presents the perfect opportunity for a relatively controlled study of seriously ill patients receiving a specific quantity and type of cannabis. While the same University of Mississippi facility that grows Rosenfeld’s medicine is paid to analyze marijuana seized all over the country by the Drug Enforcement Agency (DEA), the government is not tracking his condition. The reason given is that as a Schedule I drug under the Controlled Substances Act of 1970, cannabis has no medical benefit.

Rosenfeld’s rare bone condition, multiple congenital cartilaginous exostoses, is characterized by bony protrusions or tumors constantly popping up at the ends of long bones. Diagnosed when he was 10-years-old, the condition prevented him from attending public school, left him in constant pain and necessitated several surgeries. During a late-night college poker game in the 1970s, smoking on a rare occasion, he realized that cannabis alleviated his pain. Over time cannabis use allowed him to wean himself off of the addictive levels of prescription drugs like Dilaudid®, Quaaludes and morphine that he had been taking for years.

In 1992, during the first Bush Administration, the program that supplies his medicine stopped taking new patients. Rosenfeld, 57, is one of four remaining patients in the federal program that refuses to test results or admit new patients.

“We did have assurances from the Clinton Administration that they were going to reopen the Compassionate Care protocols,” he said. “We were very disappointed when that didn’t happen.”

Promoting the science of the plant has been a key motivator of Mary Lynn Mathre during most of her career as a nurse. Frustrated by the federal government’s refusal to acknowledge benefit, she became an advocate. She and her husband Al Byrne, a retired Navy officer, joined the National Organization for the Reform of Marijuana Laws (NORML) as board members for several years. During that time, Mathre was on NORML’s Council for Marijuana and Health Issues. Seeing urgency following the Bush Administration’s decision to shut down the federal program, the couple decided to break away from NORML and focus solely on the medical aspect. Along with the federal medical patients, they formed Patients Out of Time in 1995.

The leading educator for health care professionals and the public on the therapeutic use of cannabis, the organization hosts biennial national conferences. For a few days every two years, physicians, nurses and patients come together to share first-hand experience, focusing on the health aspect that receives scarce air time and print space in conventional media. Besides discussions on the known benefits in treating conditions such as multiple sclerosis, glaucoma and nausea following chemotherapy, speakers delve into revelations surrounding the endocannabinoid system’s homeostatic regulators throughout the human body.

Past speakers include leaders in the field of cannabis study, including Dr. Raphael Mechoulam, professor at Hebrew University in Jerusalem and Dr. Robert Melamede, chairman of the Biology Department at the University of Colorado. After isolating the main active constituent in cannabis, tetrahydroccabinol, Dr. Mechoulam has spent his career studying cannabis. He played a major role in the discovery of the endocannabinoid system. Dr. Melamede studies complex relationships of endocannabinoids in the body and the role of cannabis in reducing harm from free radicals, thus promoting cardiovascular and digestive health.

Rosenfeld is a member of Patient Out of Time’s board of directors and has attended each of its conferences. His major beef with the federal government is that even though it has provided him with approximately 3,000 ounces of marijuana, it has not studied him. A productive member of society – senior vice president of Newburgh Securities in Fort Lauderdale, Florida and a volunteer helping disabled youth – he wants more people to know that cannabis is a positive force in his life. He has written a book, available at www.mymedicinethebook.com.

Bryan Krumm, psychiatric nurse practitioner, is on Patient Out of Time’s advisory board and has spoken at its biennial conferences. He has sued the federal government in an effort to have cannabis moved from Schedule I to protect patients as well as medical professionals.

“There has been very little research done,” he said. “They (National Institute of Health (NIH) and NIDA) tend to refuse any type of research that’s looking into a benefit of marijuana. Proposals for grants looking into any kind of benefit get rejected outright. They say that because it has no accepted medical use, they don’t have the research to demonstrate that it’s safe.”

Krumm helped draft New Mexico’s medical cannabis legislation, pushing for the addition of Post Traumatic Stress Disorder as an approved condition and including nurse practitioners as well as physicians as professions permitted to make referrals.

“In terms of safety, there is nothing that we have to offer pharmaceutically that can match the safety of cannabis,” he said. “In my own practice as a clinician, I have never come across a single pharmaceutical agent that is as well tolerated, and lacking in significant side effects, as cannabis.”

Private studies document the science. In 2001, Patients Out of Time, received grant funding to allow a team led by Dr. Ethan Russo, then working with Montana Neurobehavioral Specialists, to conduct a thorough medical exam and numerous laboratory tests on four of the federal patients. Available on its website, www.medicalcannabis.com, the aim in the Missoula Chronic Clinical Cannabis Use Study was to establish therapeutic benefits and adverse effects of prolonged use in four of the seriously ill patients. In addition to complete patient review, which turned up no significant adverse effects, the report compared results to previous but larger group studies, mostly completed in other countries, and found similar outcomes.

“Cannabis: The Medicine Plant,” Patients Out of Time’s 2010 conference – The Sixth National Clinical Conference on Cannabis Therapeutics in 10 years – was held just outside of Providence, Rhode Island in April and co-sponsored by the Rhode Island State Nurses Association and the University of California, San Francisco (UCSF) School of Medicine. In attendance were 320 MDs, RNs, dozens of PhDs and patients. The conference was approved by the American Medical Association (AMA) and the American Nurses Association (ANA) for continuing education credits. Speakers came from as far as Canada, Brazil and Israel.

One focus of the Rhode Island conference was a greater commitment to dedicated specialties within physician and nursing professions.

Established in 2009, the American Academy of Cannabinoid Medicine (AACM) for physicians, including researchers and clinicians, is a specialty committed to cannabis education and advocacy of professional standards in distributing medical cannabis. Physicians within AACM working with the AMA’s Council on Science and Public Health have influenced national policy. In November 2009, the conservative AMA adopted a policy calling for further adequate and well-controlled studies of marijuana and related cannabinoids in patients with serious conditions. To facilitate well-designed clinical research, the AMA urged that marijuana’s status as a Schedule I controlled substance be reviewed. The AMA also urged NIH to issue grants to conduct the studies.

Dr. Sunil Kumar Aggarwal, AACM co-founder and current Advisory Board member, was a student when he began working on the 2008 resolution that was later incorporated into the policy statement. As summarized by AMednews, “Medical research and use of marijuana is stymied by its classification as a Schedule I drug and by criminal prosecutions of patients and physicians.”

The ANA, representing 2.6 million registered nurses nationwide, endorses medical cannabis. In 2003, the ANA’s House of Delegates passed a resolution strongly in favor of therapeutic use. That was followed by a position statement, “In Support of Patients’ Safe Access to Therapeutic Marijuana,” which was developed by its Congress on Nursing Practice and Economics and approved by ANA’s Board of Directors in December 2008.

At the Rhode Island conference, a nursing advocacy group, the American Cannabis Nurses Association was established. The aim of the specialty nursing association is to educate nurses, health care professionals, policy-makers and the public about the therapeutic use of the cannabis plant.

Running an advocacy group on an all-volunteer basis is incredibly tough work. Sponsoring accredited conferences would be enough to set most people back. Instead, Mathre is accessible, passionate about the cause and proud that the organization she co-founded is celebrating its 15th year. Besides the wealth of information supplied by Mathre and Byrne, Patients Out of Time’s extensive library containing sources of cannabis research and clinical use is available to all at www.medicalcannabis.com. Health care professionals earn continuing education units by viewing the 2006 and 2008 conference proceedings online though a link to USCF’s School of Medicine’s online Continuing Medical Education program. While she admits to being close to burn-out at times, her fascination with the topic and commitment to the medicine remain strong.

“Basically, we are here to educate health care professionals and the public about the therapeutic use of cannabis,” she said. “We’re real simple in that regard. My goodness, this is a no-brainer. Cannabis is a safe medicine."

© 2010 Mary Lou Smart

 
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