The Cannabis Patient Registry

(This article is reprinted from the newsletter of the Multidisciplinary Association for Psychedelic Studies.)

A project called the United States Cannabis Patient Registry (U.S. CPR) is being initiated to create a database and archive specific to medical marijuana patients, their caregivers, and their attorneys. The goal of the project is to help protect the rights of seriously ill Americans who choose to self-medicate with marijuana by creating a central repository of letters, documentation, and contact information. This CPR Q&A is excerpted from the newsletter of the Multidisclinary Association for Psychedelic Studies:

What exactly happens if I contact the CPR, of if I agree to let the CPR contact me?

The CPR is meant to systematize records of all the patients who choose to participate. We will ask you, preferably by phone, questions about your use, whether your doctor is supportive, what prescription drugs you've taken for your symptoms or illness, and whether you've been prescribed Marinol. We will ask if it's okay to call you, if you want to participate in coordinated lobbying efforts with fellow patients and their physicians, and if you have been arrested for your medical use.

What will be done with the information I provide?

The CPR is run under the auspices of the Multidisciplinary Association for Psychedelic Studies (MAPS), which seeks to coordinate FDA-approved research with marijuana. The last clinical trials with marijuana that took place in the U.S. were done in the early Eighties. Since then, the War on Drugs has strangled efforts at research and compassion, and patients are stuck in the middle. Some of you live in marijuana-tolerant communities. Others of you feel more isolated, and would face (or have faced) severe penalty and criticism for your need for medication, either from law enforcement, or from your own family or caregivers. The information collected is meant to benefit medical marijuana patients and compassionate caregivers as a community.

Is there really a need for the CPR? What about the other organizations and people who already help patients?

Many patients have been helped through the courageous efforts of Alliance for Cannabis Therapeutics, Cannabis Buyers Clubs and patient advocates who testify in court for people who've had trouble with the law. The CPR seeks to complement their efforts, and reach out as well to people who are very private about their choice, yet who want to contribute to data-collection and also improve their legal case for medical necessity in the unfortunate event of their arrest.

The unique idea which the CPR wishes to field-test is that of a wallet-size card of affilitation. Lots of people such as organ donors, people with acute allergies, diabetics and hemophiliacs carry identification about their medical conditions, in case of an emergency. The common emergency among medical marijuana patients is that of a possible arrest. Insuring against the hassles of criminal charges is desirable. The CPR is trying to help develop a network of affiliation for patients, physicians and attorneys to offer support for the medical necessity defense. Patients whose doctors provide a letter to the CPR documenting their need for marijuana will receive a special card from the CPR that could be shown to law enforcement officers if necessary. While such a card will probably not prevent an arrest, documented affiliation with the CPR may prove helpful in any subsequent court case.

The CPR is also trying to provide information about the statistics of the medical use of marijuana -- who uses it how for what. This information can become useful as the scientific and political climate changes.

What else will the CPR send me?

The CPR can provide you with updated information about the status of medical marijuana research and information on the larger ways that you can get involved politically to promote research.

Will my privacy be protected?

In order to protect patients, the CPR's staff is sensitive to the current legal status of marijuana. Files will be encrypted accordingly. Some people are more public than others about their marijuana use. The CPR is intended to document accurately as well as respect the various levels of privacy which a patient and his or her physician may desire. The information given will not be freely distributed! It is to be used to help strengthen the network of medical marijuana patients, which is vast!

We hope to collect lots of testimonials in the form of letters. If you really truly are scared about participating, please do send us a testimonial of why and how you use your medicine anyway. But please please participate and get in touch.

Who is running the CPR?

Sylvia Thyssen has been working with MAPS in its struggle to initiate marijuana research since Autumn 1993. In an effort to promote the growing sense of community among patients, and to help distinguish this community in the face of the oppressive marijuana drug laws, she applied for and received a grant from the Drug Policy Foundation in April '95 to initiate the CPR.

There is definite public support for medical marijuana patients. In a March 1995 survey of 750 California voters, the dramatic difference between the 22% that favored legalization for all purposes and 66% that favored legalization for medical purposes indicates that voters are distinguishing between the two (March 14, 1995 memorandum to Californians for Compassionate Use, from David Binder Research). An informal call-in poll conducted by Parade magazine in June-July 1994 resulted in 89% of callers saying marijuana should be legal for medical purposes.

Our task now is to translate the public support for the medical use of marijuana into practical steps toward legal access to marijuana for medical purposes. We hope the CPR can be one of the many efforts in that direction.

Patients, physicians, and attorneys interested in participating should contact Sylvia Thyssen at the Multidisciplinary Association for Psychedelic Studies (MAPS), 1801 Tippah Avenue, Charlotte, NC 28205, (704) 358-0518, (704) 358-1650 (fax), e-mail: [email protected], web: http://www.maps.org.

From The Activist Guide, Issue #7, October '95, DRCNet Publications section, A Guided Tour of the War on Drugs home page.

The next article is: Visit to a Federal Prison.