Patients’ Experiences and Their Confirmation

Following state laws that allow for the medical use of cannabis, an increasing number of patients have collected experience with cannabis. Many reported benefits from its use. Some of this experience has been confirmed in reports and clinical investigations or stimulated clinical research that confirmed these patients' experience on other patients suffering from the same disease

Several examples show that the attitude of people towards the medical use of cannabis is based on such personal experience. Lynn Nofziger, the former White House director of communication and chief speech writer of President Ronald Reagan, stated in a foreword to a book on the medical use of marijuana:

"Strange as it may seem, here is one right-wing Republican who supports carefully controlled, medical access to marijuana. When our grown daughter was undergoing chemotherapy for lymph cancer, she was sick and vomiting constantly as a result of her treatments. No legal drugs, including the synthetic "marijuana" pill Marinol™, helped her situation. As a result we finally turned to marijuana which, of course, we were forced to obtain illegally. With it, she kept her food down, was comfortable, and even gained weight. (...) A doctor should have every possible medication -- including marijuana -- in his armentarium. (...)" (Nofziger 1999).

In several investigations, patients’ experiences were collected by health care professionals and scientists. Among these investigations is the report "Cannabis. The scientific and medical evidence" by the British House of Lords Select Committee on Science and Technology (1998) and " Marijuana and medicine: Assessing the science base" by the U.S. Institute of Medicine (Joy et al. 1999)

The IOM report, "Marijuana and Medicine: Assessing the Science Base," was ordered by the White House Office of National Drug Control Policy in January 1997 (Joy et al. 1999). Review of available information began in August 1997, including several public hearings, site visits to cannabis buyers' clubs and HIV/AIDS clinics, and months of examining the existing scientific database. The report urges politicians to soften their hard line against the therapeutic use of cannabis and states that marijuana is potentially effective for some symptoms. It recommends rigorous clinical trials and development of a delivery system that eliminates the harmful effects of smoking. Beyond the harms of smoking, the range of problems associated with medical marijuana were within the acceptable range of problems associated with other medications.

Under the headline "Who Uses Medical Marijuana?" the IOM Report of 1999 says:

"There have been no comprehensive surveys of the demographics and medical conditions of medical marijuana users, but a few reports provide some indication. In each case, survey results should be understood to reflect the situation in which they were conducted and are not necessarily characteristic of medical marijuana users as a whole. ... The membership profile of the San Francisco club was similar to that of the Los Angeles Cannabis Resource Center (LACRC), where 83% of the 739 patients were men, 45% were 36-45 years old, and 71% were HIV-positive.... Among the 42 people who spoke at the public workshops or wrote to the study team, only six identified themselves as members of marijuana buyers' clubs. Nonetheless, they presented a similar profile: HIV - AIDS was the predominant disorder, followed by chronic pain (table 1.3) [not included here]. All HIV-AIDS patients reported that marijuana relieved nausea and vomiting and improved their appetite. About half the patients who reported using marijuana for chronic pain also reported that it reduced nausea and vomiting" (Joy et al. 1999).

With regard to the therapeutic potential the report states:

"The accumulated data indicate a potential therapeutic value for cannabinoid drugs, particularly for symptoms such as pain relief, control of nausea and vomiting, and appetite stimulation. (…)

The effects of cannabinoids on the symptoms studied are generally modest, and in most cases, there are more effective medications. However, people vary in their responses to medications and there will likely always be a subpopulation of patients who do not respond well to other medications" (Joy et al. 1999).

Gieringer (2002) noted that the indications for the medcial use of cannabis in medical cannabis clubs changed in recent years, shifting from predominantly HIV/AIDS to chronic pain, due to three reasons, (1) a heightened appreciation among physicians of cannabis’s utility for other conditions; (2) an exodus of former cannabis clubs members to new clubs, and (3) a decline in the number of HIV/AIDS patients with wasting syndrome due to the advent of protease inhibitors.

"Surveys of C.B.C. members show that cannabis is used for a wide variety of indications. Initial reports from the S.F. C.B.C. showed a high concentration of people with AIDS. A 1993-5 survey of 351 randomly-selected members of the S.F.C.B.C found that 87% (N=305) had a medically verified illness, of whom fully 84.5% (N=258) were HIV positive, a majority being diagnosed with AIDS.1 Approximately 2% each were diagnosed with multiple sclerosis (N=6) or severe musculoskeletal disorders (N=7); another 11% (N=34) were diagnosed with conditions such as cancer, glaucoma or other diseases. The sample closely reflected the gender and age distribution of San Francisco’s AIDS population (90% male and a median age of 36).

More recent surveys from other clubs reveal a far more diverse population. Table 12.1 [not included here] summarizes two surveys by Mandel of members of the Oakland Cannabis Buyers’ Cooperative (J. Mandel, 1997 and 1998, unpublished). Mandel’s first survey, in 1997, found a preponderance of AIDS patients. This is not surprising, since the O.C.B.C. absorbed a heavy influx of patients from San Francisco when the S.F. C.B.C. was first (temporarily) closed in 1996-7. More recently, Mandel’s data show that the population of people with AIDS has declined to 29% and is now smaller than those with chronic pain and related disorders (40%, by Mikuriya’s classification . . .)" (Gieringer 2002).

In several surveys conducted with patients with several diseases, cannabis preparations have been reported to be helpful.

471 persons with spinal cord injuries were asked about their experience with different pain treatments. The treatments rated as most helpful were opioid medications, physical therapy, and diazepam therapy (Warms et al 2002). Those rated as least helpful were spinal cord stimulation, counseling or psychotherapy, administration of acetaminophen, and administration of amitriptyline. Alternative treatments reported as most helpful were massage therapy and use of cannabis.

In a survey by Consroe et al. (1997), 53 UK and 59 U.S.A people with multiple sclerosis (MS) answered anonymously the first questionnaire on cannabis use and MS:

"From 9 to 30% of the subjects reported cannabis improved (in descending rank order): spasticity, chronic pain of extremities, acute paroxysmal phenomenon, tremor, emotional dysfunction, anorexia/weight loss, fatigue states, double vision, sexual dysfunction, bowel and bladder dysfunctions, vision dimness, dysfunctions of walking and balance, and memory loss. The MS subjects surveyed have specific therapeutic reasons for smoking cannabis. The survey findings will aid in the design of a clinical trial of cannabis or cannabinoid administration to MS patients or to other patients with similar signs or symptoms" (Consroe et al. 1997).

A similar investigation was conducted with patients suffering from spinal cord injury and presented at the 1998 Symposium of the International Cannabinoid Research Society (Consroe et al. 1998). A questionnaire was mailed out via an intermediate bulk mailing to the Alliance for Cannabis Therapeutics (ACT) of the U.S. Of the 190 mailed questionnaires 106 were returned as valid. 87% of the respondents were male and 13% were female with a mean age of 40 years (range: 18 to 61 years). Patients smoked marijuana for an average of 12 years, a mean of 4 marijuana cigarettes per day, mostly to relieve symptoms. Over 70% of patients took marijuana together with their other spasmolytic and analgesic medications. 82% reported that symptoms worsened when stopping their use of cannabis. Improvement with marijuana was reported from 99% to 70% of patients (in descending order) for spasms of legs, arms and bladder, muscle and phantom pains, headache, urinary urgency, and paralysis. In less than 70%, improvement was noticed for other bladder dysfunctions, bowel dysfunctions, weakness, and paresthesias. "The results indicate that SCI patients have specific therapeutic reasons for smoking marijuana," the meeting abstract says.

There are several surveys conducted in other countries, among them Australia, The Netherlands and Germany, describing medicinal benefits from cannabis use in several diseases (Barsch 1996, Schnelle et al. 1999, Helliwell 1999, Mueller-Vahl et al. 1997, TNO Preventie en Gezondheid 1998)

The medical use of cannabis not only increased in the U.S., but also in other countries. 1.9 percent of Canadians reported using marijuana for a medical reason in the year preceding a survey of the Centre for Addiction and Mental Health. Interviews were completed with 2508 Ontario adults aged 18 years or more. 49 respondents (1.9%) reported using marijuana for a medical reason in the year preceding the survey. Eighty-five percent of the surveyed medical marijuana users reported using it to help relieve pain or nausea (Ogborne et al. 2000).

Cannabis preparations are used in the treatment of numerous diseases, with marked differences in the available supporting data. For applications such as nausea and vomiting associated with cancer chemotherapy; anorexia and cachexia in HIV/AIDS, and spasticity in multiple sclerosis and spinal cord injury, there is strong evidence for medical benefits. For indications such as epilepsy, movement disorders and depression there is much less available data. However, the history of clinical use of cannabis and cannabinoids has demonstrated that the scientific evidence for a specific indication does not implicitly reflect the actual therapeutic potential for a given disease.

Clinical studies with single cannabinoids or, less often, with whole plant preparations (smoked marijuana, encapsulated cannabis extract) have often been inspired by positive anecdotal experiences of patients employing crude cannabis products (usually without legal sanction). The most often mentioned benefits are the anti-emetic (Dansak 1997), the appetite enhancing (Plasse et al. 1991), the relaxing (Clifford 1983), and the analgesic effects (Noyes & Baram 1974).

Research in recent years added to this pattern. Mueller-Vahl et al. (1997) noted that several patients reported therapeutic benefits from cannabis in Tourette syndrome (Gilles de la Tourette syndrome). This observation resulted in a structured interview which questioned 47 patients with Tourette syndrome at the Medical School of Hannover/Germany on their use of alcohol, nicotine and marijuana and the effects of these substances on their symptoms. Cannabis was reported to have a positive influence on the symptomatology.

"Using a structured interview, we questioned a larger group of patients with Tourette syndrome (n=47) about the use of nicotine, alcohol, and marijuana and their subjective experiences. Of 28 smoking patients only 2 (7%) reported a tic reduction when smoking [cigarettes]. Of 35 patients drinking alcohol 24 (69%) noted an improvement. Thirteen patients reported the use of marijuana, of whom 11 (85%) noted a marked improvement. Our results provided strong evidence that alcohol and, even more than that, marijuana cause much more improvement in TS than nicotine smoking". (...)

With respect to the considerable side effects of those therapy forms presently in use that apply neuroleptics, and considering the limited alternatives, cannabinoids could be used for therapy in the future, when further clinical research by way of controlled studies will have been conducted" (Mueller-Vahl et al. 1997).

These results stimulated research on the efficacy of dronabinol in Tourette syndrome, a study with one patient (Mueller-Vahl et al. 1999a), followed by a randomized double-blind placebo-controlled crossover trial of delta-9-THC in 12 adults (Mueller-Vahl et al. 1999b). Both confirmed the patients' experience described in the interviews.

In several studies, patients’ experiences have been further investigated usually leading to a confirmation of their subjective experience. A patient with multiple sclerosis reported a reduction of spasticity and tremor with smoking a cannabis cigarette. This was confirmed in a single case study with smoked cannabis (Meinck et al. 1989). A patient with spinal cord injury reported a reduction of spasticity and pain with smoking cannabis. This experience was confirmed in an extended double-blind controlled study of several weeks with dronabinol (Maurer et al. 1990). A patient with multiple sclerosis who had experienced relief from cannabis smoking received the synthetic THC derivative nabilone in a double blind manner (Martyn et al. 1995). Spasticity was reduced and bladder function was improved with the verum. A patient with a ten-year history of acute and chronic abdominal pain from Familial Mediterranean Fever who required daily morphine (30mg) for analgesia had experienced relief from smoked cannabis (Holdcroft et al. 1997). This subjective experience was confirmed in a double-blind study with a capsulated cannabis extract. The authors stated:

"This is the first United Kingdom report of the controlled use of a standardised pharmaceutical preparation of cannabinoids in capsular form. The therapy was assessed in a patient with familial Mediterranean fever, who presented with chronic relapsing pain and inflammation of gastrointestinal origin. After determining a suitable analgesic dosage, a double-blind placebo-controlled cross-over trial was conducted using 50 mg tetrahydrocannabinol daily in five doses in the active weeks and measuring effects on parameters of inflammation and pain. Although no anti-inflammatory effects of tetrahydrocannabinol were detected during the trial, a highly significant reduction (p < 0.001) in additional analgesic requirements was achieved" (Holdcroft et al. 1997).

In an extended study, patients who receive cannabis through a Compassionate Investigational New Drug Program (IND) of the Food and Drug Administration (FDA) and obtain it from the National Institute on Drug Abuse (NIDA) were examined with regard to medicinal benefits from smoked cannabis and long-term side effects. Therapeutic effects on several conditions could be confirmed (Russo et al. 2002).

These patients’ reports and supporting clinical research confirm that the subjective benefits from cannabis experienced by many patients, suffering from a range of illnesses and symptoms, have a rational basis.

References

Barsch, G.: Zur therapeutischen Anwendung von Cannabis - Ergebnisse einer Pilotstudie unter HIV-positiven und Aids-kranken Männern und Frauen. In: Deutsche Aids Hilfe (Hrsg.): Cannabis als Medizin. Beiträge auf einer Fachtagung zu einem drängenden Thema. Berlin, Aids-Forum D.A.H., 1996.
Clifford DB. Tetrahydrocannabinol for tremor in multiple sclerosis. Annals of Neurology 1983;13:669-671.
Consroe P, et al: Reported marijuana effects in patients with spinal cord injury. 1998 Symposium on the Cannabinoids, Burlington, Vermont, International Cannabinoid Research Society, p 64.
Consroe P, Musty R, Rein J, Tillery W, Pertwee R. The perceived effects of smoked cannabis on patients with multiple sclerosis. Eur Neurol 1997;38(1):44-8.
Dansak DA. As an antiemetic and appetite stimulant in cancer patients. In: Mathre ML, ed. Cannabis in medical practice: A legal, historical and pharmacological overview of the therapeutic use of marijuana. Jefferson/NC: McFarland & Co, 1997, pp. 69-83.
Gieringer D. Medical Use of Cannabis: Experience in California. In Cannabis and Cannabinoids. Pharmacology, Toxicology, and Therapeutic Potential, edited by F. Grotenhermen and E. Russo. Binghamton (NY): Haworth Press, 2002.
Helliwell, D.: GPs are key informants in medicinal cannabis survey. GP Speak, Newsletter of the Northern Rivers Division of General Practice, April 1999, S.4.
Holdcroft A, Smith M, Jacklin A, Hodgson H, Smith B, Newton M, Evans F. Pain relief with oral cannabinoids in familial Mediterranean fever. Anaesthesia 1997;52:483-488.
House of Lords Select Committee on Science and Technology. Cannabis. The scientific and medical evidence. London: The Stationery Office, 1998.
Joy JE, Watson SJ, Benson JA, eds. Marijuana and medicine: Assessing the science base. Institute of Medicine. Washington DC: National Academy Press, 1999.
Martyn CN, Illis LS, Thom J. Nabilone in the treatment of multiple sclerosis. Lancet 1995; 345(8949):579.
Maurer M, Henn V, Dittrich A, Hofmann A. Delta-9-tetrahydrocannabinol shows antispastic and analgesic effects in a single case double-blind trial. European Archives of Psychiatry and Clinical Neuroscience 1990;240:1-4.
Meinck HM, Schönle PWA, Conrad B. Effect of cannabinoids on spasticity and ataxia in multiple sclerosis. Journal of Neurology 1989;236:120-122.
Mueller-Vahl KR, Kolbe H, Schneider U, Emrich H M: Cannabis in Movement Disorders. In: Grotenhermen F, Saller R (eds): Cannabis und Cannabinoide in der Medizin [Cannabis and Cannabinoids in Medicine]. Research in Complementary Medicine 6, Supplement 3, 1999b.
Mueller-Vahl KR, Schneider U, Kolbe H, Emrich HM: Treatment of Tourette's syndrome with delta-9-tetrahydrocannabinol. Am J Psychiatry 156:3, 1999a.
Mueller-Vahl, K.R., Kolbe, H., Dengler, R.: Gilles de la Tourette-Syndrom. Einfluß von Nikotin, Alkohol und Marihuana auf die klinische Symptomatik. Nervenarzt 1997;68:985-989.
Nofziger L. Foreword. In: Marijuana RX - The Patients Fight for Medicinal Pot, edited by Robert C Randall and Alice M O'Leary, 1999.
Noyes R, Baram DA. Cannabis analgesia. Comprehensive Psychiatry 1974;15:531-535.
Ogborne AC, Smart RG, Adlaf EM. Self-reported medical use of marijuana: a survey of the general population. CMAJ 2000;162:1685-1686.
Plasse TF, Gorter RW, Krasnow SH, Lane M, Shepard KV, Wadleigh RG. Recent clinical experience with dronabinol. Pharmacology, Biochemistry and Behavior 1991;40:695-700.
Russo E, Mathre ML, Byrne A, Velin R, Bach PJ, Sanchez-Ramos J, Kirlin KA. Chronic Cannabis Use in the Compassionate Investigational New Drug Program: An Examination of Benefits and Adverse Effects of Legal Clinical Cannabis. J Cannabis Ther 2002;2(1):3-58.
Schnelle M, Grotenhermen F, Reif M, Gorter RW. Results of a standardized survey on the medical use of cannabis products in the German-speaking area. Forsch Komplementarmed 1999 Oct;6 Suppl 3:28-36
TNO Preventie en Gezondheid: Aard en omvang van Cannabis gebruik bij mensen met Multiple Sclerose. 1998, ISBN 9067435171.
Warms CA, Turner JA, Marshall HM, Cardenas DD. Treatments for chronic pain associated with spinal cord injuries: many are tried, few are helpful. Clin J Pain 2002;18(3):154-63.