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Characteristics and Experiences of a
Cohort of 489 Patients Self-Medicating
with Cannabis for Pain and Other Symptoms


David Hadorn, MD and Linda Jackson, LVN


Natural Remedies Health Center

Berkeley, CA  94704

July 18, 2003

Abstract

We evaluated 489 patients in various locations in California over the course of nine months through June, 2003.  Patients were mostly self-referred based on their desire to obtain physician approvals under the provisions of California Proposition 215 for ongoing self-medication with cannabis.   The diagnostic case-mix largely mirrors the range of chronic physical and psychological suffering seen in other primary care settings.  Most of our patients with chronic pain had already tried conventional pharmaceutical remedies without relief or with unacceptable side effects.  Side effects from cannabis medicines were mostly absent and where present, were mild.  About half of patients with primary care providers had discussed their cannabis use with those providers, most of whom were supportive but unwilling (or unable, where the provider was not a physician) to provide the sought-after physician approval.  Patients reported a moderate degree of continued euphoria ("high") with long-term use. This effect was important to many, but not all patients, in terms of achieving the desired therapeutic effect.

Introduction

Not a great deal is known about the tens of thousands of patients who have received physician approvals or recommendations for the use of cannabis medicines (CM) under State laws legalizing such use.  Information from States with registries, such as Oregon, Hawaii, and Alaska, have found that most patients seeking physician approvals for CM are men over age 40, mostly suffering from chronic pain and muscle spasms or spasticity due to multiple sclerosis and other conditions.  In its recent report on this subject, the U.S. General Accounting Office1  found that 74 percent and 84 percent of the patients in HawaiWe and Oregon programs, respectively, fell into these diagnostic categories.  Most of the remaining patients were treated for cancer, HIV-AIDS, severe nausea, epilepsy, and glaucoma.

To gain better perspective, the GAO also examined secondary diagnoses in patients on the Oregon registry:

We examined the pool of secondary conditions associated with severe pain and muscle spasms, the two largest condition categories.  About 40 percent of patients with severe pain reported muscle spasms, migraines, arthritis, or nausea as secondary medical conditions.  The most common secondary conditions reported by those with muscles spasms were pain, multiple sclerosis, and fibromyalgia, accounting for 37 percent of the secondary conditions for spasms.  A variety of other conditions were identified in the Oregon data, such as acid reflux, asthma, chronic fatigue syndrome, hepatitis C, and lupus (p. 26)

Approximately 70 percent of patients with CM approvals in HawaiWe and Oregon were men.  About 70 percent of the patients receiving CM approvals in Hawaii, Oregon, and Alaska were over age 40.

California does not have a patient registry in support of its Proposition 215 (codified as Health & Safety Code #11362.5).  However, a certain amount of information is available concerning the illnesses and conditions for which patients have been receiving approvals for CM in California.  An analysis of 3,000 patients seen by one physician between 1993 and 20002  reported that 1,316 patients (43.6 percent) used CM primarily as a pain reliever.  Additional diagnoses included mood disturbances (847 patients; 28.2 percent), muscle spasms or convulsions (680 patients; 22.7 percent), harm-reduction to relieve addictions to alcohol and "hard drugs" (126 patients; 4.2 percent), and anorexia (31 patients; 1.0 percent).

A review of 286 cases evaluated in California by another physician experienced in cannabis therapeutics found that many patients have had previous problems with alcohol and other psychoactive drugs.  According to the report, "Cannabis is a stabilizing agent for people who have demonstrated a real weakness for both alcohol and tobacco and a tendency to explore other drugs.  Itthe most benign form of self-medication available, and demonstrably helpful."3

The Wo/men Alliance for Medical Marijuana, a non-commercial patient cooperative near Santa Cruz sees a much higher percentage of patients with cancer and other serious or terminal illnesses.4  This is largely due to the limited number of patient spaces available and to the hospice-like philosophy of the cooperative, which is largely devoted to improving the quality of the dying process for patients with terminal illnesses.

A recent survey of 11 physicians who have sub-specialized in CM was recently published in O'Shaughnessey (Summer 2003), the journal of the California Cannabis Research Medical Group.  Findings of interest included:

  • Almost all patients (>99 percent) had already been self-medicating with CM prior to evaluation.
  • Over half of patients had diagnoses of chronic pain.
  • Mood disorders accounted for approximately 25 percent of diagnoses, including depression, anxiety, and post-traumatic stress disorder.
  • All physicians reported the absence of any serious side effects

California Proposition 215

Aside from the lack of any registry to keep track of patients, the California law authorizing use of CM differs from analogous laws in other States in one other important respect.  Specifically, unlike all other State laws Proposition 215 it does not restrict eligibility to patients with one of a handful of specific conditions named in the legislation.  Rather, California physicians are permitted to recommend or approve CM for any patient with a "serious illness . . . for which marijuana provides relief".   The principal upshot of this broader scope appears to be that patients with mood disturbances (e.g., chronic anxiety or depression) are eligible for CM approvals in California, but in no other State.  This is a significant difference in view of the prevalence of mood disturbances in society and the well-known relaxing and mood-stabilizing effects of CM.

According to records maintained by the Oakland Cannabis Buyers Cooperative (which issues identification cards to patients who have received physicians' recommendations or approvals), more than 2,000 California physicians have recommended or approved the use of CM for at least one patient.  The vast majority of these physicians issued approvals only once or a very few times. The large majority of approvals have come from 15 - 20 physicians who have made CM into a sub-speciality of sorts.  (The top three CM-approving physicians in California have each issued more than 7,000 recommendations or approvals.)

In large part because of lasting memories of intimidation by the federal government shortly after passage of Proposition 215 in 1996, most California physicians are reluctant to recommend or approve CM medicines for their patients.  Other factors contributing to this reticence include a general lack of information about CM, antipathy to herbal or natural remedies (and a complementary affinity for pharmaceutical products), and concern that the Medical Board of California has initiated investigations of at least nine physicians who have approved CM.  

Our Practice

We initiated our practice in Berkeley California in October 2002. Our primary goals (in no particular order) were (1) to provide patients with the protections available to them under State law, (2) to gain clinical experience with CM, (3) to relieve suffering in patients with persistent pain and other symptoms, and (4) to communicate with other physicians and nurses who have made a subspecialty of CM, (5) to prepare a clinical practice guideline on the use of CM and (6) to set the stage for outcome studies.

During the process of obtaining clinical information on patients, we also wished to learn a few things about their experiences with CM about which there is little or no data available.  One question was the extent to which patients had informed their private doctors (or other primary care providers) about their use of CM prior to seeking my approval.  Also, when physicians were told about patients' CM use, what was their reaction?  

We also wished to obtain information concerning the extent to which patients continue to experience a euphoric effect ("high") after long-term self-administration and the extent to which this effect is considered important to achieving the desired therapeutic effect, e.g., pain relief.  Based on anecdotal information, there appears to be some differences of opinion on these latter points among the CM-using patient community.  Accordingly, we incorporated these research questions on the above-described research questions into the patient intake form (Appendix D).  Patients were also questioned about any undesirable side effects they may have experienced.

The purpose of this paper is to summarize the responses obtained to these questions, in addition to providing a summary of the demographic and clinical characteristics of our patients.  This information can then be added to the slowly accumulating data base describing the patients who receive approvals for CM under provisions of State laws.

Patients and Methods

Patients were seen by the authors of this article in offices in Berkeley, Oakland, Santa Monica, and Fresno, California, between October 2002 and June 2003.  All but two patients had been self-medicating with cannabis for one or more years prior to evaluation.   Most patients were self-referrals after learning of our practice on the California NORML website - www.canorml.org.  Most of the remaining patients were self-referred based on word of mouth.  Patients came primarily seeking approval of their CM pursuant to protections available under Proposition 215.   Many were also seeking education on safer and more efficient CM use.

A detailed exposition of our approach to patients is available at www.davidhadorn.com/CM_guideline.htm.  At the outset, patients are required to sign a "consent and information" form, in which they attest to having (what they consider to be) a "serious medical condition" insofar as the condition causes significant suffering or substantially interferes with their usual daily activities.  Each patient then completes a standard intake form, providing information on their chief complaint, history of present illness, previous treatments, and prior experience with the use of CM.  These latter questions include information about side effects and the following four research questions:


  1.  Have you talked to your primary health provider about your use of cannabis?

    Yes
    No
  2.  If yes, what was his/her reaction?:

    Agreed enthusiastically
    Agreed reluctantly
    Didn't agree but not hostile
    Hostile    


  3.  How "high" do you get when you use cannabis medicinally?

    Very
    Somewhat
    Not at all


  4.  How important is the "high" to the effectiveness of cannabis for you?

    Very
    Somewhat
    Not at all

At the conclusion of the clinical evaluation, patients were assigned a principal diagnosis, based on DH judgment concerning the nature of the patient's chief underlying clinical problem.  Where appropriate, one or more secondary diagnoses were also assigned.  Chronic pain due to previous musculoskeletal trauma was divided into back, neck, and extremity pain (e.g., shoulder or knee).  Pain in the extremities due to arthritis was coded as arthritis.  

We tabulated the principal diagnoses assigned to each patient in our sample.  In a separate analysis, we tabulated the top 10 combined principal and secondary diagnoses in order to provide a single indicator of the major conditions from which the patients in this sample were suffering.

We recorded all side effects reported by our patients.  The question about side effects on the intake form was open ended insofar as patients had to write in the side effect rather than ticking a box on a list of side effects.  Where more than one side effect was listed, only the first one was coded.  Both of these factors (adopted for practical reasons) may have contributed to some degree of under-reporting of side effects.

Where patients circled both "somewhat" and either "very" or "not at all" in Questions 3 and 4, this was coded as "somewhat".  This double response occurred in about 20 cases, approximately equally divided between co-circling "very" and "not at all".  We doubt whether this phenomenon produced any significant bias in the responses to these questions.

Results

In all cases, patients reported that CM was more effective than other drugs they had tried for their condition.  Many patients continued to use prescription or over-the-counter pharmaceutical drugs in conjunction with CM.   

One hundred eleven of our patients were female (22.7 percent).  The age distribution is depicted in Table 1.  Principal diagnoses and combined principal and secondary diagnoses are shown in Tables 2 and 3.   Reported side effects are tabulated in Table 4.  Total patient counts vary due to missing data.



Table 1.  Age Distribution

Age Number Percent
-----
18-25 97 20.0
26-40 203 41.9
41-55 146 30.1
>55 39 8.0
-----
Total 485 100



Table 2   Principal Diagnosis    (N = 489)

NumberPercent
1Chronic back pain14028.6
2Chronic extremity pain8417.2
3Chronic anxiety336.8
4Migraine headache295.9
5Depression255.1
6Arthritis214.3
7Headache (not migraine)214.3
8Chronic insomnia204.1
9Chronic neck pain193.9
10Chronic anorexia153.1
11ADHD81.6
12Asthma7 1.4
13Hepatitis C61.2
14Neuropathy61.2
15Cancer40.8
16Glaucoma40.8
17Seizure disorder40.8
18Crohns/colitis30.6
19Chronic pancreatitis30.6
20Psoriasis30.6
21High blood pressure20.4
22Irritable bowel20.4
23Multiple sclerosis20.4
24Chronic stress20.4
25HIV-AIDS20.4
26Post-trauma stress20.4
27Dysmenorrhea20.4
28Chronic nausea20.4
29Heart failure10.2
30Chronic myocarditis 10.2
31Schizophrenia10.2
32Spinal cord injury10.2
33Sleep apnea10.2
34Myofascial syndrome10.2
35Post-orchiectomy pain10.2
36Anal fistula10.2
37Diabetes10.2
38Nephrotic syndrome10.2
39Scleroderma10.2
40TMJ disorder10.2
41Systemic lupus10.2
42Hiatal hernia10.2
43Thallasemia1 0.2
44Osteoporosis pain10.2
45Chronic ear pain10.2
46Bulimia10.2

 Total489100



Table 3 Combined Primary and Secondary Diagnoses (N = 612)*

DiagnosisNumberPercentage
1 Back pain16627.1
2 Extremity pain11418.6
3 Insomnia6610.8
4 Anxiety528.5
5 Depression457.4
6 Neck pain406.5
7 Arthritis335.4
8 Headache (not migr.)335.4
9 Migraine325.2
10 Anorexia315.1

 612 100

*123 patients were assigned one or more secondary diagnoses + 489 = 612



Table 4   Side Effects

 NumberPercent
None30874.0
Munchies327.7
Drowsiness225.3
Dry mouth122.9
Laziness81.9
Short-term memory loss71.7
Coughing41.0
Lack of concentration30.7
Throat irritation30.7
Mild paranoia30.7
Dizziness20.5
Mild headache20.5
Red eyes20.5
Dehydration10.2
Possible upset balance10.2
Self-conscious10.2
Wheezing10.2
Moodiness10.2
Uneasiness10.2
Loss of appetite10.2
Cranky without10.2

Total416100


Table 5 summarizes the results of the four research questions.

5a.

Told doctor?PercentNumber

Yes21452.5
No19447.5

Total408100

5b.

Doctor response (if told)?
Doctor response?NumberPercent

Agreed enthusiastically 5125
Agreed reluctantly 7135
Didn't agree but not hostile 7336
Hostile94

Total 204100

5c.

How "high" do you get when medicating?NumberPercent

Very41 9.7
Somewhat 36686.7
Not at all 153.6

Total 422100


5d.

How important is the "high" to the medical effect?

 NumberPercent

Very 11427.0
Somewhat 21551.0
Not at all 9322.0

Total 422100


Discussion

Our patients were younger than those registered to receive CM in Hawaii and Oregon.  Thirty-eight point four percent of our patients were over 40 years of age, in contrast to 70 percent in those states.  This larger proportion of younger patients may in part reflect differences in geographical age demographics.  Case-mix differences do not appear to explain the age difference.  Our sample was weighted somewhat more in favor of males than those reported in other states (77 percent versus about 70 percent).  

The diagnostic case-mix of patients in this sample is comparable to what is seen in other outpatient or primary care settings, including general practices, ambulatory care clinics, and emergency departments.  Most of our patients had been seen previously in such settings, often many times, for evaluation and treatment of chronic pain and other symptoms.  Almost all had already tried without much success the usual pharmacopoeia typically prescribed to suffering patients by physicians - with hydrocodone and anti-depressants heading the list.  Without exception, CM proved more effective than these standard pharmaceutical products. (Of course, many patients that we did not see may be gaining perfectly adequate relief from these products.)  

Our patients were a small sample of the large population of patients with chronic pain.  Several studies have demonstrated that physicians commonly under-treat chronic pain, due in large part to the twin fears of producing addictions in their patients and of drawing the attention of the DEA for "over-prescribing".  I encourage physicians to begin discussions concerning the role of CM within the broader, multi-modality treatment of patients with chronic pain.  Recent research conducted into interactions between cannabinoid receptors and opiate receptors in the brain and peripheral nerves confirms clinical observations that cannabis can reduce the need for opiate analgesics by 50 percent or more.  

Side effects were reported by about 25 percent of our patients.  These were mostly mild in nature, with increased appetite being the most commonly reported effect. Even taking into account a possible under-reporting of side effects due to the design of the intake form and coding practices (see Methods section), the safety and tolerability of CM relative to other therapeutically active agents can be considered confirmed by this sample.

Of those patients who reported having primary providers (not always physicians), a little over half reported having discussed their cannabis use with these providers, 25 percent of whom "agreed enthusiastically" with the patient use, while 35 percent and 36 percent, respectively, reportedly "agreed reluctantly" and "didn't agree but not hostile".  Only 9 physicians (4 percent) were described as being "hostile" to the idea of CM.  

Thus, a total of 60 percent of physicians were reported to agree with their patient use of cannabis, while 40 percent disagreed.  This is probably a much higher level of support than would be observed among physicians in most other parts of the country, the difference likely being due to the relatively high profile that CM and Proposition 215 have received in Northern California.  Nevertheless, patients uniformly reported that even those physicians who were supportive of their cannabis use were "too afraid" to write recommendations. We encouraged these patients to further educate their doctors on this topic and to ask them to consider providing any future approvals for CM.

Only about 10 percent of patients reported getting "very" high while medicating, 87 percent said they got "somewhat" high and 15 patients (3.6 percent) denied getting high at all. Based on previous communications with other providers with experience in CM, we would have expected more patients to say they didn't get high at all, while the percentage reporting getting very high is about what I would have expected.
 
27 percent of our patients said that the high was "very important" to achieving clinical benefit from CM, about half (51 percent) said it was "somewhat important" and the remaining 22 percent said it wasn't important "at all".  This seems congruent with our expectations.

Policy implications emerging from these findings include the need to educate physicians about the safety and effectiveness of cannabis medicines in patients with chronic pain.  Patients should also be encouraged to educate their physicians about the effects they have experienced through their use of cannabis medicines.  Physicians learn mostly from their patients, as we tell our patients.  Several streams of activity are underway that will likely contribute to the education of both physicians and patients about cannabis medicines, including development of a CME course and creation of guidelines by the Medical Board of California, with the input of the California Medical Association, on appropriate practice in this area.  

Our findings concerning the persistence of euphoric effects and their contribution to the therapeutic effect are somewhat of a mixed bag.  Clearly not many patients are getting "very high", but disproportionately more patients who get only "somewhat" high consider it "very important" to the therapeutic effect.  But for most patients, the high is only "somewhat" important, and for almost one-quarter of the patients the high was not deemed important at all.  It appears that the "high" is a significant contributor for some, but not all patients.  

Additional evidence in support of this conclusion comes from work done in the UK by GW Pharmaceuticals, which has shown that most patients treated for pain and spasticity with their standardized CM for symptoms of multiple sclerosis and related conditions gain significant relief without experiencing a "high".  These are often middle-aged women with little or no prior experience with cannabis.  Similarly, anecdotal reports from a variety of sources suggest that elderly patients may not generally experience much of a high, though they often do gain significant symptom relief.  

Although the patients in our practice seem similar to patients in other outpatient settings, they are not necessarily representative of all the patients who could benefit from CM.  In particular, relatively few of our patients had cancer, multiple sclerosis, or HIV-AIDS.  It is possible that many patients with these and other very serious or terminal conditions are already obtaining recommendations or approvals from their regular physicians, and some may already be obtaining (or cultivating) cannabis for their medical needs but do not wish to discuss the situation with a physician because of concerns about confidentiality.
 
For the most part, however, patients with these conditions may simply be going without the benefits of CM.  The coming promulgation of clinical guidelines for appropriate use of CM may encourage an increasing number of physicians to offer the benefits of these medicines safely to their patients. We hope that our positive experiences to date, as reported above, will also have a reassuring effect in this regard.

Footnotes

  1. U.S. General Accounting Office.  Marijuana: Early experiences with four States' laws that allow use for medical purposes. GAO-03-189, November 1992. http://www.gao.gov/new.items/d03189.pdf
  2. Mikuriya, T. Clinical Review: 3000 Cases; Medical Uses of Cannabis in California 1993-2000. Presented at: The First National Clinical Conference On Cannabis Therapeutics, Iowa City, Iowa April 7, 2000.
  3. O'Connell T. Notes on what to look for. O'Shaughnessy (Summary 2003), pp. 4, 13.
  4. V.L. Corral. Differential Effects of Medical Marijuana Based on Strain and Route of Administration: A Three-Year Observational Study  J Cannabis Ther 2001(3/4):43-59.




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