How to get on Delaware's medical marijuana list

Susan Humphreys likes to say she lives a strange life.

Picture frames are glued to the walls of her Bear home. The refrigerator has a lock.

The precautions were for her son, Scott, who was diagnosed with autism and was extremely aggressive. Scott also was diagnosed with Pica, a persistent eating condition causing people to almost unconsciously eat non-food items such as nails and dirt.

By the time he reached 41, Scott had used over 20 antipsychotic medications and had three major surgeries to remove items he had eaten from his body.

Humphreys said her son was running out of medicinal options to try, so she decided to look into a more natural approach: medical marijuana.

Medical marijuana became legal in Delaware in 2011, with the state's first dispensing site opening in June. However, under the law, only people with certain conditions, such as debilitating pain, cancer, Lou Gehrig's disease and Alzheimer's, could obtain an identification card to purchase medicinal cannabis per a physician's referral.

Marijuana use is illegal, but states have the jurisdiction to legislate the drug's use on their own terms. With medical marijuana, state laws differ in which conditions are appropriate for cannabis treatment.

In Delaware, patients with a doctor's support can petition for certain conditions to be added to the list. Research does not need to exist or prove that marijuana would help.

In California and Washington, D.C., physicians can recommend the treatment at their discretion, said Paul Armentano, deputy director of NORML, a marijuana rights advocacy group. Alabama physicians, on the other hand, are only allowed to recommend medical marijuana for patients with "debilitating epileptic conditions."

It took six months, but Humphreys lobbied the state health department to add autism to that list. Now, patients with autism who are prone to aggressive or self-injurious tendencies will be able to apply for medical marijuana cards.

Sadly, Scott died in June, but all of these efforts are in his honor, Humphreys said.

"He is never going to have the opportunity to try the medical marijuana, but I’m glad it is going to be out there," she said.

Yet, some clinicians are still wary of medical marijuana treatment.

Dr. Susan Peterson, Autism Delaware's clinical director, said she had never thought of medical marijuana as a treatment for patients with autism and aggressive tendencies. Though she's unaware of any research, she said she could potentially see the benefits and would like to see more evidence on the topic.

"It's a good idea to look into it," Peterson said.

There are two issues surfacing nationwide, said Dr. David Casarett, director of hospice and palliative care at the University of Pennsylvania and author of the science book "Stoned."

"States are making very different decisions based on the same data," Casarett said. "Either there's enough evidence to support it or there isn't."

The process by which state laws are being created can lead to discrepancies in data and research, Casarett said.

"I don’t think anyone has a sense on how much evidence is required," he said. "In general, laws have probably gotten ahead of the evidence."

In Delaware, people can petition the state Department of Health and Social Services to add to the list of allowable conditions under the medical marijuana act.

After a series of public hearings and public comment, the state reviews the petition request, said Dr. Karyl Rattay, director of Delaware's Division of Public Health, which oversees the state's medical marijuana program.

The decision to add the condition is not based on the number of people affected by the ailment, Rattay said, "it's based on what we know at this point."

"We know that the research is scarce when it comes to medical marijuana," she said. "Part of the petition involves gathering that information. The best available research at that time."

A petition also needs to include letters of support from Delaware physicians.

Memories of Scott are still around Humphreys' house. Sympathy cards are hanging from the wall and photos of Scott and his beloved Buddy, a German Shepherd-mix are close to Humphreys' heart.

Every Tuesday night at 8 p.m., she watches "The Muppets," just in case Scottie wants to watch them from up above, she said.

Humphreys filled a nearly 60-page binder with information about Scott's condition and why medical marijuana could potentially help. She first got the idea it would help his aggressive autism after reading that agitation from Alzheimer's was a permissible condition on Delaware's list.

"What's the difference from that?" she said. "(Scott) doesn’t understand when he's hurting you and lashing out."

Each of the 20 medications Scott tried came with symptoms, but Scott could not verbalize how he was feeling, Humphreys said. Instead he would act out by scratching his caretakers or removing his clothes.

Scott tried synthetic marijuana, but it didn't help much, Humphreys said. It also was expensive, costing $500 for a 30-day supply of capsules, because it wasn't covered by insurance.

There were many times when Scott was happy and laughing, she said, especially when he had his hair in the wind, whether he was on a roller coaster or running.

She just wanted to give him more of those good days, and she was running out of medical options to try.

"There isn't a cure for autism, but I was hoping it would make him more comfortable and if he was less aggressive I could get him out in the community even more," Humphreys said.

Included in her petition was a letter to the state from Scott's psychiatrist for the last six years. He wrote that he felt people who experienced agitation from autism with aggressive and/or self injurious tendencies "could benefit from marijuana."

Antipsychotic medications can have serious side effects and some patients do not respond well to them, he wrote.

"A natural medication approach would be worth trying to help alleviate the agitation and aggressive behaviors," he continued. "These individuals deserve a chance to live better lives including going out into the community. Aggressive behaviors can limit their daily living activities."

A separate law, passed in June, also allows children to use marijuana-extracted oils for treatment of conditions such as seizures and muscle spasms. Now, more than 600 Delaware residents have cards issued by the state health department allowing them to purchase marijuana from the center.

However, many physicians shy away from discussing medical marijuana without the research to back it up. Autism Speaks and the Kennedy Krieger Insitute in Baltimore declined to comment on the topic.

Research is essential in laying the foundation for medical marijuana treatment, said Dr. Barret Michalec, assistant director of health research at the University of Delaware’s Center for Drug and Health Studies.

According to the listing of clinical trials through the NIH, there are 93 studies regarding marijuana abuse, and 73 exploring how the drug impacts patients’ symptoms for conditions from ADHD to epilepsy.

Legislation was signed into law over the summer that allows federally approved centers to begin medical marijuana research in Delaware, but clinicians and researchers are learning as they go, Michalec said. There still is little knowledge of specifically what strain of medical marijuana can help a specific symptom.

“The stigma still associated with marijuana permeates so many levels,” Michalec said. “People don’t want to touch it.”

“It’s a learning process, but we have to be open to learning,” he said. “We are saying this is a viable option for patients, but we still don’t know too much about it.”

Michalec hopes that his organization will work with the state's medical marijuana dispensing center, First State Compassion Center in Wilmington, to build a survey on their patient population to develop a better system of matching marijuana strains to symptoms.

Right now, the evidence is anecdotal.

To 31-year-old Leslie Baker, medical marijuana is a “lifesaver.” The strain "Headband" helps her cope with lingering cancer-related pain and nausea.

“When I looked at a kitchen table I could fill it up with the amount of prescriptions,” Baker said.

Baker was diagnosed with Stage 3 ovarian cancer in March after weeks of suffering with excruciating stomach pain.

After bouncing from doctor to doctor, she said oncologists found a tumor in her pelvis that was completely wrapped around her uterus. Under a CT scan the cancer spots lit up everywhere.

A six-hour emergency surgery removed most of the tumors, but she needed 18 weeks of chemotherapy. The side effects brought her down to 104 pounds; she just didn't feel like eating with the pain and nausea.

After she started using medical marijuana, she jumped to 134 pounds and was able to get her strength back. Just recently, she stopped walking with a cane and was given a "clean bill of health" by her doctors Aug. 6.

"I'm lucky to be alive," Baker said.

Going forward, she still has to take pills every day, but she vaporizes marijuana in morning to start her day.

It's not about getting a high, Baker said. She's found a treatment that helps her feel human again.

"There are times you are hugging a toilet wishing God will kill you," she said.

Now, everything has changed; even the birds sound different.

"To me, that's the blessing," she said.

Jen Rini can be reached at (302) 324-2386 or jrini@delawareonline.com. Follow @JenRini on Twitter.

Number of medical marijuana cards issued by condition:

Pain: 386

Cancer: 73

HIV: 16

AIDS: 9

Hepatitis C: 34

ALS 4

Alzheimer's disease: 2

Post-traumatic stress disorder: 19

Cachexia: 23

Nausea: 49

Seizures: 26

Muscle spasms: 181