Frank Kennamer (SBN 157844)
neha nissen (SBN 190848)
Three Embarcadero Center
San Francisco, California 94111-4067
Attorneys for WAMM Plaintiffs
Gerald Uelmen (SBN 39909)
Santa Clara University School of Law
500 El Camino Real
Attorney for County of
UNITED STATES DISTRICT COURT
NORTHERN DISTRICT OF CALIFORNIA
SAN JOSE DIVISION
county of santa cruz, California; City of santa cruz, california; Valerie Corral; Eladio V. acosta; james daniel baehr; Michael cheslosky; jennifer LEE hentz; dorothy gibbs; harold F. margolin; and Wo/men’s alliance for medical marijuana,
Alberto Gonzales, Attorney General of the United States; JOHN BROWN, III, Acting Administrator of the Drug Enforcement Administration; John P. Walters, Director of the Office of National Drug Control Policy; and 30 UNKNOWN Drug Enforcement Administration AGENTS,
I, Michael Cheslosky, declare as follows:
1. I am a resident of Santa Cruz diagnosed with HIV/AIDS. I also suffer from several other chronic medical conditions associated with the disease, including Kaposi’s sarcoma, Hepatitis C, thrush, liver disease, a damaged spleen, gastrointestinal disorders, neuropathic illnesses, and degenerative disk disease. Recurrent pneumonia, chronic pain, and wasting syndrome are also aspects of my deteriorating health.
2. I was born January 10, 1954 in Shenandoah, Pennsylvania. I spent most of my childhood in Rockville, Maryland, where I lived until I graduated from high school. I attended Lycoming College in Williamsport, Pennsylvania. Later, I earned a Masters of Arts in Legal Studies (MALS) through a joint program between American University and Antioch College in Washington, D.C. Until I left Washington D.C. in 1984, I worked for two private firms contracted to do project management for two Navy departments in Northern Virginia, including the Pentagon.
3. During the evening of November 2, 1983 I noticed a purple spot on my foot about the size of a silver dollar. Although it was early in the AIDS epidemic and very little was known about the disease, I knew enough to be terrified. I tried to ignore it, but the lesion on my foot was quite real. On January 20, 1984, I was diagnosed with Kaposi’s sarcoma (KS). KS is an often fatal cancer that strikes individuals with compromised immune systems. By 1984, it had been identified as one of the two primary opportunistic infections associated with the AIDS virus. There were no known treatments at that time and there was very little public awareness about AIDS. However, a KS diagnosis was considered to be a death sentence. At that time, most patients diagnosed with KS died soon thereafter. My doctor told me that I only had six months to live.
4. My treating doctor confided in me that he also had KS. We discussed the reality of this unknown and hopeless diagnosis. This left me even more terrified – the person I was relying on for help was, himself, helpless. My doctor committed suicide a few weeks after that discussion. A black hole opened; I didn’t know how I was going to tell my family that I was sick and I worried about my friends’ response. I decided to leave Washington D.C.
5. In June of 1984, I moved to San Diego and worked as a database designer for Hydro-Products Incorporated. I was part of a team developing and producing a Mine Neutralization System (MNS) for the U.S. Navy. From 1984-1990, dozens of KS lesions appeared all over my legs, arms, trunk, back, neck and face. I was too frightened to see a physician at that time because I feared that, if my employer discovered my illness, I would be fired and lose crucial health benefits. I also felt that it was futile to delay the inevitable through the medical treatment available at that time. In a sense, I was just waiting to die. The only treatments I tried were various herbal remedies that were popular at that time. Around 1985 or 1986, some of my friends with AIDS were taking AZT (still an experimental treatment at that time) and I watched as they suffered from its debilitating side effects. I later learned that patients at that time were being given three to four times the correct dose of AZT and were often suffering from AZT poisoning in addition to the side-effects of the medications. Their experiences were truly miserable and I did not want to share their fate. All of those friends have since passed away.
6. After Honeywell purchased Hydro-Products and closed their San Diego facility in 1990, I was transferred to Seattle, Washington. Despite my condition, it was extremely important for me to carry on a normal life, including meaningful work. It was also critical that I maintain medical coverage as my health deteriorated. Moving to Seattle enabled me to do just that.
7. After getting established in Seattle, I began seeing a physician who could treat my virus. By this time I knew more people who were having mild success with antiviral medications and the options had expanded beyond AZT. Coupled with the fact that I was still alive, I now had my first hope for survival. After all, I had already outlasted my initial six month prognosis by six years. My doctor in Seattle advised me that the only treatment for Kaposi’s sarcoma was Interferon, a steroid that I injected directly intramuscularly. I began Interferon treatments on November 25, 1991. I started with one million units, three times a week, and shortly increased to nine million units, three times a week. I continued this treatment until I left Seattle in 1994. This is also when I began taking AZT because the doctors insisted that the Interferon would not work against KS without AZT.
8. I did not question the wisdom of this treatment and I complied with the regime. However, the side effects were debilitating. For more than two years, I lived with constant nausea, frozen and painful joints, and intense body sweats that left me exhausted and dehydrated. I suffered drastic metabolic changes, causing my body temperature to fluctuate uncontrollably and unpredictably. The Interferon treatments severely damaged my liver and caused episodes of severe anemia, an enlarged spleen, and chronic thrombocytopenia. As it was explained to me, thrombocytopenia is an abnormal number of blood platelets that can result in fatal bleeding. A normal platelet count should be somewhere between 140 and 450. My count during this period was between 30 and 40, and since then has never been above 70. Since this condition is severe and chronic (it persists today), I was given repeated blood platelets between 1991 and 1993. After eliminating all other possibilities, I believe, and my doctors concur, that these blood transfusions were very likely how I contracted Hepatitis C. By late 1992, my condition was so debilitating that I was forced to go on short-term disability, which later became long-term.
9. The side effects I experienced with Interferon were not unique to me. There were known risks of the treatment, but they were considered to be less dangerous than the risks of leaving my condition untreated. This balancing act has been a part of my life since I was first diagnosed. My doctors and I always have to weigh the damage caused by the illness itself (including the long-term risks) against the suffering caused by the available treatments. That balance has become more difficult to assess as I have developed additional medical disorders. As stated earlier, when I began the Interferon treatments, my doctor insisted that I also take AZT. The two treatments overlapped for the almost three years I was taking Interferon. Since AZT has side effects of its own, it is difficult to know which drugs were causing nausea, anemia, and diarrhea. At this time I was also taking high doses of Elavil and Klonopin for pain and as a sleep aid. I also began taking ddI, d4T and ddC (all antiviral medications) around 1993. These three antiviral medications were administered in high doses and I began experiencing peripheral neuropathy. The symptoms of peripheral neuropathy began with my nerve ends, affecting my hands, feet, lips, and skin. I became unable to feel the external conditions affecting my body, such as boiling bathwater and the pain from stepping on a nail in the backyard. Neuropathy also causes me to over-exert my muscles, bones, and joints because I often cannot feel anything past my knees or forearms.
10. The severe side effects of the Interferon and AZT drastically affected every aspect of my life. Before these treatments, I was physically active and enjoyed running and mountain climbing. After the treatments, I was exhausted and depleted. I could barely walk or climb stairs. The drugs inhibited my ability to focus, decreasing my productivity and efficiency at work. This became a real concern since my job required intense concentration, including laying out schedules, dealing with massive amounts of data, knowing numerous computer systems and their software, and being the primary customer interface between production and the U.S. Navy. I began to doubt my mental faculties, which frightened me more than the disease itself. My energy level dropped significantly and I was visibly fatigued. Instead of eating during the lunch break, I frequently went home to sleep, slept at my desk, or slept in the woods behind our facility. The various HIV/AIDS treatments often left me nauseous, vomiting and having to deal with severe abdominal cramps and diarrhea. I often cannot eat because of the medications, but it is sometimes impossible to take the medication on an empty stomach because I simply cannot keep from vomiting what’s in my stomach. Diarrhea prevented me from going anywhere other than work, where I knew I was around the corner from a restroom.
11. I also experience wasting syndrome, a deadly side effect common to people with HIV/AIDS that results in extreme loss of both body weight and body mass, as well as other complications. Its effects on me are particularly severe because of the abuse inflicted upon my abdominal organs by the aforementioned treatments. In 1995, I had my gall bladder removed due to infection. My liver is basically nonfunctional, and I have an enlarged spleen caused by the thrombocytopenia. As a result, I suffer severe stabs of pain whenever I have food in my large intestine. My entire gastrointestinal system, especially my stomach, is also badly damaged, resulting in severe abdominal pain and gastroesophogeal reflux disease. Consequently, my desire to eat becomes irrelevant and I lose weight and strength. I have had two endoscopies, a colonoscopy, MRIs, PET scans, x-rays, biopsies and numerous other tests. Unfortunately, I often end up eating things that are not particularly healthy, simply because they are the only things that I can keep down and pass without pain. When illness does strike (like my propensity for various pneumonias), I lose between 10-15 pounds in 6 days and struggle to put it back on.
12. In 1991, I received some sample pills of Marinol from my physician to address the pain and the nausea from the Interferon treatments. Since I am quite sensitive to medications and had experienced the side effects of other drugs, I only took one pill at first, as prescribed. The instructions allowed me to supplement the dosage as needed. After several hours, I felt no effects at all. Two days later after my next Interferon injection, I took two Marinol pills, and was literally unable to move for hours. This was obviously more than I needed. I tried on other occasions to find a dose that I could tolerate, but the medicine was unpredictable and prevented me from functioning normally. It was impossible to adjust the dosage to meet my needs. As a result I discarded the remainder of the Marinol pills. The minor pain relief I experienced with Marinol was not worth the trouble of not knowing how it would affect me physically, mentally, and emotionally. As for nausea, swallowing a pill with water to stop vomiting will NOT work at least not in my experience. The two pills I took for episodes of nausea didn’t stay in my stomach for more than five minutes.
13. By the summer of 1992, my health had deteriorated to the point where work had become an insurmountable task. After strong advice from my doctor, I went on disability from Alliant Techsystems (Honeywell had divested itself of military contracts and formed this company) – with their full support and encouragement – in August of 1992 and focused on taking care of myself and improving my health.
14. In 1994, I moved to Santa Cruz, California and began seeing Dr. Nanette Mickiewicz for medical care. At that point, new therapies were emerging on how best to fight HIV, including “cocktails” involving protease inhibitors and combinations of other medications. Dr. Mickiewicz and I changed my treatment regimen depending on my CD4 (T-cell) levels and viral load, but remaining sensitive to my body’s reactions to the drugs. My CD4 counts stabilized in the low 200s and my viral load seemed to be low or non-detectable, which in and of itself was remarkable, since I had been told I was supposed to die 10 years beforehand.
15. In 1996, I began a round of chemotherapy treatment for Kaposi’s sarcoma in San Francisco as part of a Doxirubicin trial. I was selected to receive 10 weeks of injections of the traditional form of chemotherapy with Adriomycin, Bleomycin, and Vincristine, or “ABV” (and not the newer, less invasive Doxirubicin that was being tested in the study). My doctors felt that KS may have begun to reassert itself and that this would act as a “systemic” that would hopefully get rid of the KS and lymphoma as well. While undergoing chemotherapy, I experienced more severe neuropathy – shooting pains down my legs and up my back. The pain was ongoing and unresponsive to any medication and was completely disabling. I could not stay in one position for more than an hour without my legs kicking involuntarily. Shooting pains constantly radiated down my spine and into my legs, and I usually vomited for days after the anti-nausea drugs wore off. My feet were numb and the soles of my feet felt soft and uncontrollable. At times, it felt as if I was walking on cottage cheese that was embedded with sharp electric needles. This type of neuropathy has been a serious problem ever since. Dr. Mickiewicz told me that it is probably caused by my HIV medications. She has recommended Vicodin, Percocet, and other narcotics for the pain. However, I am reluctant to take these medications because of their addictive nature and harsh side effects. I found some relief with acupuncture treatments, but this isn’t always available 24 hours a day.
16. In 1997, I was also diagnosed with degenerative disk disease. After a series of MRI’s to find out why my sciatica was getting worse, they discovered that two of my spinal disks (T-2 and L-5, I believe) had collapsed and were the probable cause of my back, leg and neck pains. This condition, along with the neuropathy, was ascribed to AIDS drugs and chemotherapy side-effects such as dehydration and an inability to feel exertion, which caused continuing nerve damage. As a result, I am always at risk of injuring myself and have done so several times.
17. I began using medical marijuana shortly after Proposition 215 went into effect in 1996. I had discussed the benefits of medical marijuana with Dr. Mickiewicz and she recommended that I use it to control the nausea and chronic pain I experienced. I heard about the Wo/men’s Alliance for Medical Marijuana (WAMM), which had already been in existence for some time, but when I checked into joining I found that they had a waiting list. I put my name on the list. In the meantime, I had to drive all the way to San Francisco to buy my medical marijuana from a cooperative there. I later discovered that a new medical marijuana club had formed in Santa Cruz and I applied for membership and was accepted. However, it was prohibitively costly, which limited the amount of medication I could receive. Fortunately in 1998 a spot became available and I was finally accepted into the WAMM collective after I provided a signed recommendation from my doctor. I have received my medical marijuana products from WAMM since then. WAMM has become a critical part of my medical treatment and my general well-being. My dosages of medical marijuana come in many forms, including in soy milk, teas, baked in muffins, topical solutions, and smokable forms.
18. Medical marijuana was originally recommended to treat my nausea and chronic pain and has proven to be more effective than any of the numerous other treatments I have tried. Applied as a spray, it effectively relieves the pain caused by arthritis and the severe nerve damage in my hands and back. This spray WAMM produces, which I have not seen anywhere else, has absolutely no side effects except to warm and soothe my cramping abdominal and back muscles, throbbing joints, and my pain-ridden hand and feet nerve endings. It is effective without the debilitating grogginess, nausea and lethargy I experienced with other prescribed pain medications (Vicodin, Percocet, Neurontin, Codiene, and of course aspirin), including those prescribed specifically for spastic pain and neuropathy (such as Bentyl, Klonopin, Prednisone, and NuLev). Marijuana also acts as an appetite stimulant, helping me eat enough to avoid “wasting” and the malnutrition that results.
19. Before using marijuana, vomiting, nausea, and stomach pains dominated my daily life. They were unpredictable and uncontrollable, often so severe that I was literally housebound for days at a time. The nausea came in waves, usually with headaches and dizziness. It prevented me from eating regular meals and frequently left me sleepless. There have been periods when nausea, vomiting, or both were so persistent that I was unable to keep down my HIV medications. If I vomited my medications, I would have to take a second dose immediately after vomiting to keep the drug levels in my blood consistent for the therapies to work effectively. Although I never smoked tobacco, smoking medical marijuana provides almost instant relief from the nausea without the incapacitating side effects that often occur with prescription drugs. At times, it causes throat problems, but considering the health benefits and the alternatives, I think this is a fair trade.
20. I have a chronic, potentially fatal, autoimmune disorder. Ongoing sleep disruptions, chronic pain, anxiety, as well as malnutrition, were destroying my health, leaving me extremely vulnerable to infections and respiratory diseases. Medical marijuana has controlled my gastrointestinal symptoms to the point where they no longer control my daily activities. This became more important when it was discovered that I was also infected with Hepatitis C (HCV). At one point, the gastritis from HIV medications left me so weak and dehydrated that I was unable to digest proteins or benefit from either food or medications. Medical marijuana has enabled me to adhere to the various HIV regimens. Unlike Marinol, medical marijuana is more easily controlled and I can avoid the mental confusion and lethargy from over-medication.
21. When my health permits, I volunteer as an AIDS educator with the Santa Cruz AIDS Project (SCAP) and as a grief counselor with Hospice Caring Project (HCP) here in Santa Cruz. My work has been recognized by various organizations throughout the Santa Cruz community. I believe that my ability to serve my community is directly related to my use of medical marijuana. If I were under traditional medical care (narcotics, pain blockers, relaxants and tranquilizers) the severe side-effects of these medications would prevent me from being able to focus on the needs of others, my tasks and responsibilities, or even myself. Frankly, I consider no life worse than that.
22. While working at the SCAP and HCP, I have met numerous individuals who use medical marijuana to curb the side-effects of various medications and different treatments, much like I do. I have learned that the use of medical marijuana, like the use of narcotics for palliative care in a terminal hospice situation, does not cause intoxication or any pleasurable sensation. The medicines go to the pain source and quiet it down without debilitating the patient.
23. WAMM has been an indispensable part of my health care and emotional well-being since I joined WAMM many years ago. The WAMM community provides me with marijuana in medically appropriate forms that are safe and reliable. The emotional support given by WAMM and its members has profoundly impacted my mental state, giving me strength as I continue my struggle with HIV/AIDS. That support has enabled me to use my own skills in counseling and care-giving to help others with chronic medical conditions. In 2000, I was instrumental in establishing a grief support group for WAMM members.
24. In accordance with the rules of WAMM I have never taken medical marijuana from WAMM out of California, and I only use it in my house. I do not sell or give away any of the medicine I obtain from WAMM and WAMM is my only source of medical marijuana.
25. The tenor of WAMM changed dramatically after the September 5, 2002 raid of its facilities. What was once a hopeful and uplifting community became sullen and fearful. We have been forced to shift our attention from “How can we help people?” to “How can we protect ourselves?” Since the raid, there has been a shortage of medical supplies and a marked decline in morale. It seems as if the membership’s death rate has increased. For many, the unavailability of medical marijuana has made their last weeks more painful and isolated. I believe that the increase in deaths and suffering is related to past and present actions of the federal government – especially the September 5, 2002 raid – as well as fear of future actions aimed at WAMM and its members.
I declare under penalty of perjury under the laws of the United States of America and the State of California that the foregoing is true and correct to the best of my knowledge, and that this declaration was executed on this 21st day of April, 2003, in Santa Cruz, California.
Copyright Women's Alliance for Medical Marijuana 2007 - 2008