Nat Dean, shown with her assistance dog, Tommy, at their home in Santa Fe on Friday, developed chronic pain and post-traumatic stress disorder from injuries she sustained in a car crash in 1984. At one point, she was taking 27 different medications to ease her symptoms. She says the cannabis she uses through the state’s Medical Cannabis Program is an alternative tool that helps her more than all of her previous medications combined. Jane Phillips/The New Mexican -
Cannabis catch-22: PTSD patients could be dropped from state's medical program
Deborah Busemeyer | For The New Mexican
Posted: Saturday, October 13, 2012 - 10/13/12
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What’s the petition process?
The New Mexico Department of Health’s Medical Cannabis Advisory Board will hear a recommendation to remove PTSD as a qualifying condition for medical cannabis in New Mexico at a public hearing from 1 to 5 p.m. in the Harold Runnels Building, 1190 St. Francis Drive, in Santa Fe.
Within a few weeks after the hearing, the advisory board will send its recommendation to the health secretary (or the interim health secretary, Brad McGrath). The secretary will review the report and petition, as well as any literature, professional medical opinions and relevant evidence presented, and public comment. The health secretary has no time limit for making a decision, but has 10 days to notify the petitioner of his decision.
If the secretary decides a health condition should be removed from the program, this would have to be done through a rule change, which would require public comment.
Source: The New Mexico Department of Health
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Statewide, there are 3,155 medical marijuana users with PTSD listed as the qualifying health condition. The largest counties in the state also have the most PTSD users:
Bernalillo — 1,338
Santa fe — 493
Sandoval — 231
Doña Ana — 173
But when adjusted for population, some smaller communities are shown to have the most PTSD patients per 1,000 residents:
Statewide — 1.53 per 1,000 residents
Mora — 7.17
San Miguel — 4.96
Santa Fe — 3.41
Bernailillo — 2.01
Rio Arriba — 1.61
Sandoval — 1.75
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Valerie Romero, 30, grew up in a home with alcohol abuse and violence. She was 16 when the state of New Mexico took her and her sisters away from their parents. Later that year, she learned she had post-traumatic stress disorder.
Nat Dean, 56, was waiting to make a left turn near her San Francisco loft when another car crashed into hers. She woke up three days later and discovered her jaw bones were crushed. Twenty-five years later, as Dean was juggling 27 medications for such conditions as anxiety, sleeplessness, psychosis, pain and depression, she was diagnosed with PTSD.
Adam Kokesh, 30, was convinced he had combat stress when he would reach for a pistol that wasn’t there several days after he returned from Iraq. The U.S. Department of Veterans Affairs gave him five prescriptions for his anxiety and sleeplessness; three listed suicide as a possible side effect. The only one he tried made him feel worse.
These Santa Fe residents are patients in the New Mexico Department of Health’s Medical Cannabis Program, which allows them to use cannabis legally under state law. They say marijuana is the only treatment that provides them relief from their anxiety, panic attacks, sleeplessness, depression and confusion without causing toxic side effects.
“It’s the safest alternative out there,” said Romero, who has tried more than a dozen anti-anxiety medications that either didn’t work or made her feel more depressed and anxious. “I know how much it helped me.”
New Mexico is one of three states that allows PTSD patients to use medical cannabis. Now that right is threatened by a petition before the state Department of Health. Dr. William Ulwelling, a psychiatrist for more than 30 years in Albuquerque, plans to appear before the Medical Cannabis Advisory Board on Nov. 7 in Santa Fe to ask the board to recommend that the state’s health secretary remove PTSD from the program.
Out of 7,924 patients enrolled in the state’s Medical Cannabis Program, 3,288, or 41 percent, are diagnosed with PTSD. They are the largest patient population in the program, followed by 2,253 chronic pain patients. Many of those PTSD patients are veterans, but no one tracks that number.
Ulwelling bases his petition on two facts: There is no scientific evidence that cannabis treats PTSD, and there is evidence that people have been harmed by using cannabis. Ulwelling said he has no knowledge of any New Mexico medical cannabis patient being harmed. Instead, he cites his experience with one mental health patient, who became psychotic while using cannabis. However, the patient did not suffer from PTSD.
Also, Ulwelling refers to a published report of nine case studies showing that marijuana was a “component cause” in people becoming psychotic, meaning there is another reason for the reaction, such as genetic vulnerability.
“If the studies are done, it might turn out that marijuana is a great treatment for PTSD,” Ulwelling said in a phone interview. “It’s doing it backwards to say, ‘Let’s give it to the citizens of the state of New Mexico and see if it works.’ Studies should be done first.”
Ulwelling is in the process of getting the American Psychiatric Association to accept his position that people with PTSD should not have access to medical cannabis. He said the district and regional branches of the association have accepted his paper, which reads like a resolution. It could become the official policy of the American Psychiatric Association if the Board of Trustees, which meets in October, approves it, he said.
“The American Psychiatric Association is a recognized authority for psychiatric treatment and diagnoses,” he said. “That’s why I’m hoping the state of New Mexico is going to listen to APA’s input on this matter.”
Ulwelling retired from his practice five years ago. He was a psychiatry resident at a veterans hospital at the University of California before moving to Albuquerque and caring for hospitalized patients with severe PTSD in a facility that has since closed.
Barriers to cannabis study
People involved with medical cannabis are outraged by Ulwelling’s petition because they believe cannabis benefits a population that suffers from a debilitating disease. However, they agree there isn’t enough scientific evidence, and they say that’s because the federal government routinely blocks proposed studies into the benefits of cannabis.
“I wish more than anything else that the federal government would drop its stigma of cannabis so research can get done in an objective way and we would find out what the benefits are,” said Dr. Alfredo Vigil, a former state health secretary who added PTSD as a condition for the Medical Cannabis Program.
So far, health officials have relied on case studies, anecdotal reports and some research conducted by the Center for Medicinal Cannabis Research at the University of California into how cannabis may help relieve pain, spasticity and nausea.
Researchers are trying to learn more about the 60-plus cannabinoids, or chemical compounds, that are present in cannabis because each has a different effect on the body. A week ago, the internationalJournal of Psychopharmacology published results from a study in the United Kingdom that found one of the major cannabinoids — cannabidiol (CBD) — can decrease psychosis symptoms and memory problems that are caused by another main cannabinoid, Delta-9-tetrahydrocannabinoil (THC).
A University of Arizona researcher, with the assistance of the Multidisciplinary Association for Psychedelic Studies, has proposed the first controlled study in the U.S. of medical cannabis’ effects on PTSD patients. Her study would examine the effects of CBD and THC by offering patients varying levels of the two cannabinoids.
The U.S. Food and Drug Administration approved the proposal in 2011 to study 50 veterans with PTSD, but the study hasn’t been able to get clearance from the federal government to buy research-grade cannabis from the National Institute of Public Health, according to Dr. Sue Sisley, an Arizona primary-care physician and principal investigator for the study.
“As physicians, we want to be able to work with patients and counsel them on how to utilize the therapies we recommend,” she said. “In this case, we’re all clueless in how to counsel patients on how to use the drug because it’s never been allowed to go through proper drug development.”
Albuquerque nurse Bryan Krumm has certified about 1,000 patients for the Medical Cannabis Program. The Nurse Practitioner Journal recently accepted his research paper based on patient case studies in New Mexico. In “Cannabis in Post-Traumatic Stress Disorder (PTSD): A Neurobiological Approach to Treatment,” Krumm outlines how cannabis can slow down an overactive amygdala in the brain, which can cause anxiety and a constant stream of negative thoughts.
Also, cannabis can help regulate neurotransmitters in the brain that affect mood, sleep, learning, pleasure and behavior, he said.
“We had a controlled clinical trial approved in New Mexico, but NIDA [the National Institute of Drug Abuse] refused to release their supply of marijuana to do the research,” Krumm said. “I’m looking at this as a laboratory with state programs, reviewing the evidence and reporting on my findings. At this point, it’s the closest we can come.”
Sisley hopes that as more states adopt medical cannabis programs, the federal government will be pressured to allow studies. “It’s heartbreaking how the federal government has halted any progress into researching medical marijuana,” Sisley said. “Legitimate, high-level science will never be allowed under federal prohibition.”
Valerie Romero
As a teenager and young adult, Romero tried any kind of illegal drug — and later legal ones — to prevent her from feeling anything. By 2006, the Santa Fe native got her first steady job and started to stabilize her life. But the layers of childhood trauma, sexual abuse, domestic violence and postpartum depression left her hopeless and suicidal.
“My doctor saw I was not making any progress, and we both agreed medical cannabis was the last resort,” she said.
Medical cannabis allowed her to feel normal, she said. She no longer struggles to get out of bed. “I could go about life the way I needed to.”
Romero, like the other patients, recognizes that medical cannabis isn’t for everyone, and that people who have PTSD need more than medication to help them work through their past trauma. She sees a therapist every week and said she has learned tools to fight against negative thoughts. More than anything, she believes medical cannabis allowed her to reach out to God and renew her faith in a way that shapes her life now.
She said medical cannabis helped her through a very rough time in her life, but she stopped taking it because she wanted a more permanent solution to her depression and anxiety. She now relies on prayer to get beyond the past that haunts her. Still, she likes knowing medical cannabis is available if she needs the extra help.
As an alcoholic with past drug-abuse problems, Romero doesn’t believe medical cannabis is a gateway drug, and she doesn’t believe it is addictive. The prescribed drugs she took gave her cravings and withdrawal symptoms, but not cannabis, she said.
“I think people get addicted to feeling OK in their own skin,” she said.
She doesn’t agree with Ulwelling’s petition or his theory that medical cannabis can cause harm.
“I don’t think anyone’s in a place to judge what medication is right or what’s effective for people,” Romero said. “I think people need to acknowledge the seriousness of PTSD. A lot of people experience it, and we just want relief. I don’t think it’s right to deny them … something they need to get relief.”
Ulwelling said even if the state drops PTSD as a condition for the Medical Cannabis Program, it may need to allow current PTSD patients to continue receiving their treatment.
But Nat Dean says it wouldn’t be fair for some to have access to medication while others cannot.
Nat Dean
Dean’s story is long and harrowing.
Because she didn’t receive an accurate diagnosis, she spent many years struggling to understand the changes in her mind that caused her to lose her graphic design business and her role as a national leader in the art community.
Dean moved to Santa Fe 18 years ago after marrying an Albuquerque native. Over the years, she accumulated a host of chemicals in her body — 27 drugs, some to treat her symptoms and others to lessen the medications’ side effects.
When she had her gall bladder removed due to a serious condition four years ago, she was taken off all her medications and began to regress. She started to believe that her car was talking to her. She tried to fill up her phone with water, mistaking it for a glass.
When she finally recovered from mania and depression, she vowed she would never take so many drugs again. She was nervous about trying medical cannabis because she doesn’t like to feel high or out of control. She seeks out strains that have high concentrations of CBD, which reduce anxiety, and lower levels of THC.
“I believe medical cannabis has been a real effective tool for me so I don’t have to add more chemicals to the mix,” she said. “I think it creates a healthier lifestyle if you use it appropriately.”
Now she takes only six medications for the chronic pain and traumatic brain injury from her car crash 28 years ago. She weighs 65 pounds less and no longer suffers from some of the health conditions that may have been caused by her past prescriptions. She held out a bright red, manicured pinky nail to show the amount of medical cannabis she takes before bed each night.
“It calms me down if I’m agitated,” she said. “It bridges me through the pain until the next day.”
She said she would not use marijuana if she had to get it illegally or if she couldn’t be certain that the strain was higher in CBD levels than THC.
“Without [PTSD] being an approved condition,” she said, “there could be a danger in people seeking [marijuana] on the street and not having control over how it affects them. Losing the approved condition would mean losing control over what you get and then losing control over your life.”
Rallying for PTSD patients
The Drug Policy Alliance and the New Mexico Medical Cannabis Patient’s Alliance are launching a campaign this week to convince the state to reject Ulwelling’s PTSD petition and continue allowing patients safe access to their medicine.
“If this is a medication that works for you, you should have it,” said Emily Kaltenbach, director of the Drug Policy Alliance. “If we are prohibiting a medication that works, is it causing harm to the patients and the community?”
Kaltenbach talks to patients who have PTSD from being sexually assaulted, seeing combat or caring for trauma patients as first responders. Patients tell her they don’t use as much — or any — opiates when they can have medical cannabis.
“As a state where we lead the nation in overdoses because of prescription drugs, isn’t it a good thing if people can reduce their pain and their symptoms by using medical cannabis, but also reduce the potential harm of seriously addictive narcotics that made them feel like they couldn’t function?” Kaltenbach questioned.
Adam Kokesh
Kokesh has lived in Santa Fe on and off since he was 10. At that time, his parents divorced and his father moved to Santa Fe.
He had his first anxiety attack a couple of days after returning home from service in Iraq. He said he felt as if he were doused in liquid, out of control and overwhelmed by anxiety. He would wake early in the morning, confused and feeling like he had to be somewhere.
He met older veterans with similar experiences and established the support group Homefront Battle Buddies in Washington, D.C. He credits talk therapy with enabling him to get control of his symptoms and understand how his previous experience affects his current state of mind.
When the VA offered medications with suicide risks, Kokesh turned to cannabis instead. “I said, ‘this isn’t working,’ and decided to take charge of my own health instead of letting doctors make those decisions,” he said. “I started smoking deliberately as a way to control anxiety and use it productively and positively.”
At his support group, veterans used cannabis in different ways. Some needed to smoke before meetings so they were able to talk; others used cannabis as a way to relax afterwards.
“I think [cannabis is] very important for controlling the symptomatic problems,” Kokesh said. “It’s important to know it’s not a cure, but being able to deal with temporary anxiety issues and have a relaxation effect is sometimes necessary in order to get to a point so you can properly engage in talk therapy.”
New Mexico’s decision
Critics of medical cannabis often cite the lack of scientific research as a reason to prohibit patients with PTSD from accessing that treatment. Colorado and Arizona’s health departments have denied petitions to add PTSD into their medical cannabis programs for that reason.
It’s an issue that gave former Health Secretary Vigil pause when the Medical Cannabis Advisory Board recommended he add PTSD as a condition in 2009.
In the end, Vigil was convinced that there was evidence showing some benefit for patients, and a lot of evidence showing that other medications haven’t been that effective and have, in some cases, been harmful.
“It’s a complex disease that causes a lot of suffering, and you have people who are risking legal punishment for using it,” Vigil said. “It seemed reasonable.”
Lacking scientific studies, health officials have to rely on patients’ testimony and experience with the treatment, said Dr. Bill Johnson, a Santa Fe psychiatrist and a member of the Medical Cannabis Advisory Board since its inception. Medical cannabis patients have to learn how much cannabis they need, and what strains are helpful.
“Cannabis requires a more collaborative relationship with the doctor whose knowledge base is not as great as the patient,” he said in an interview at his Zia Behavioral Health office.
Johnson has certified close to 250 adults with PTSD for the program. Like any medicine, cannabis doesn’t work for everyone. He finds that most patients have used it before and know it helped calm them.
Since there are no diagnostic tests for PTSD, some have questioned whether people could fake symptoms to get medical cannabis. Johnson said he doesn’t believe that’s prevalent, and he noted that people could claim any psychiatric condition to get medications, which is why psychiatrists screen patients. The state Health Department requires that a psychiatrist be involved in a PTSD patient’s care.
Both Dr. Johnson and Dr. Steve Jenison, who was medical director of the Medical Cannabis Program from 2007, when it started, until 2010, had reservations about adding PTSD in 2009 because of the lack of scientific evidence. PTSD remains the only psychiatric condition allowed under the Medical Cannabis Program.
In 2007, the Institute of Medicine issued a report based on its extensive review of available literature on PTSD. The nonprofit concluded that certain therapies, such as prolonged exposure and cognitive processing, could be helpful to treat the condition. However, it also found that half of PTSD patients weren’t seeking any treatment, and no studies supported the pharmaceuticals being used.
“At the time, there was a real sense that there were a lot of people who were sort of adrift and didn’t have access to care or didn’t believe that the care would be relevant to them,” said Jenison, who is now chairman of the Medical Advisory Board that will review Ulwelling’s petition.
The Medical Cannabis Advisory Board debated studies on both sides of the issue. Some studies found that PTSD patients reported that cannabis reduced their symptoms, including the frequency and intensity of their nightmares.
Other studies found that young people who used marijuana were more likely to have schizophrenia symptoms earlier than others. However, researchers couldn’t answer the question of whether marijuana caused early onset of schizophrenia, or whether people who had schizophrenia were more likely to take marijuana to feel better, Jenison said.
Faced with insufficient evidence, the advisory board turned to the intent of the Lynn and Erin Compassionate Use Act that then-Gov. Bill Richardson signed in 2006 — to protect individuals from state criminal liability for possession of a reasonable amount of marijuana for the treatment of their medical condition.
The board was unanimous in its decision. In Jenison’s role at the Health Department before he retired, he called every new physician who certified patients for the Medical Cannabis Program. He was impressed by how often psychiatrists told him they had tried everything else first — inpatient psychiatric hospitalizations, medications and behavioral health counseling.
“Many said, ‘I know why they are using marijuana. They are using it to relieve their PTSD symptoms, and the last thing I want is to have them arrested and prosecuted for the possession of marijuana. That’s not going to be helpful to their clinical situation.’ ”
Deborah Busemeyer is a freelance journalist in Santa Fe and a former communications director for the state Health Department. Contact her at dbusemeyer@gmail.com.