By CCC Advisor & contributor, Kirsten Velasco.
Kirsten Velasco: Hi Maureen and Jim, so happy that we finally get to spend time together. It’s ironic that with both of us doing advocacy and both living in Schaumburg that we haven’t spent more time together. Your activities went toward legislative action and I was out doing public education. Please get us started by talking about how we got to this point.
Jim & Maureen Surin: Our daughter, Ashley was two when diagnosed with leukemia. The chemo caused brain damage and left her with seizures. Then she went on 3 neuro meds. When Ashley was 11, she fell and got such a bad head injury that she had to have surgery to remove the blood from the brain. That was when we had an epiphany that we were on a repeated cycle of insanity. Meaning, doing the same treatments and expecting different results, but dealing with the same problems. We remembered one physician that seemed different, with more natural holistic approaches, Dr. Toni Bark. She recommended a Keto diet and gave us these little pellets that had CBD. Not only did her seizures diminish, but Ashley’s teachers also raved about her energy and engagement. Unfortunately, Ashley had another seizure and we were worried that this new medicine wouldn’t work. Dr. Bark said to try adding THC to the CBD, and since then, although we don’t do an entirely Keto diet, modified like gluten-free, this cannabis protocol that we have her on has had results we would never dare to dream of. She is in high school, participating in poms and a theater group.
KV: Did you have to wean her off of the other pharmaceuticals?
M&JS: Yes, we weaned her off 3 meds. (one per month). Dr. Bark gave us guidance on slowly diminishing her doses while increasing her CBD slowly.
We kept a journal of her food for a while and also her CBD regime. It took us three months to taper off all her Rxs, and if occasionally Ashley had a negative reaction/withdrawal reaction to a lowered dose, so we just used a CBD cannabis topical from Mary’s Medicinals on her wrists.
A major part of this process was making sure Ashley had access to her medicine while in school right? Yes, and also on buses and at after-school or weekend activities.
We thought, hey, this is a government-regulated medical cannabis program and these are Illinois public schools, this shouldn’t be a problem but after we talked to the school nurses and school administrators, we understood that the Federal rules prevented “marijuana” from being in schools. We have to say that everyone, from the teachers, state reps, and lawyers, they were super supportive and listened to us, we just had to go through the process of getting this cleared for Ashley. We walked into the Dirksen Federal Building for court with their support and the judge said, “You’ve got homework, go home and write a law.” Which we all contributed to, and they even said we will give you a TRO (temporary restraining order) to prevent us from being prosecuted until Ashley graduated Junior High (giving Legislators time to make Ashley’s Law). We were offered a temporary permit for Ashley, but we needed permanent permission and we needed protection for all the other children in the state. The court proceedings went perfectly. Everyone was in agreement to help Ashley and our family.
Rep. Lou Lang, (retired), Rep. Bob Morgan, Cristina Castro, and Steve Glink, our attorney all worked on the law, and legislators from both sides of the aisle all agreed to bring it out of committee and vote to pass. All but two legislators voted in favor of Ashley’s law.
Now, we’ve educated the school nurse on how to administer Ashley’s medicine the same way they handle all the other kid’s medicines.
KV: Do you have concerns about the medical program now?
M&JS: Well, we got the law expanded to allow an additional caregiver because the law didn’t proactively understand the needs of the parents to have other people capable of purchasing and administering cannabis medicine. We also were able to get a Park Law passed so that children in parks and camps are safe.
We think COAs (Certificate Of Authenticity) should be available automatically for each product, without needing to ask or hope they have it. Testing needs to stay in place and be very strict. We wonder why only 55 dispensaries are licensed to serve medical card holders, about 140K active patients in Illinois, and only 55 dispensaries to serve them? That doesn’t provide them with the access that they deserve after so many patients sacrificed to prove this was a worthy and viable option. We wish every dispensary would give registered patients purchases with the medical tax rate.
We also feel like we are under house arrest! Ashley is a Make-A-Wish Alum. We asked if we could bring her to Disney World in Florida, but they won’t allow ANY type of cannabis medicine in the park. We went so far as to question TSA directly at the airport because we wanted to take a trip to Arizona. We know that many people travel with their cannabis medicine, but we were too nervous. So, even though every day with Ashley and everything she does is a miracle, we still have these strange, illogical limitations simply because the general population doesn’t understand the safety and positive effects of cannabis. When we were in Springfield committee hearings, we showed them a one-inch thick stack of product warning inserts from Ashley’s neurological meds and one little list of potential side effects of cannabis. You know how with real estate, it’s “location, location, location.” Well, with cannabis it’s “education, education, education.” ( My father was an appraiser and would love that reference. )
KV: How has the expansion in Illinois to recreational cannabis affected the medical program?
M&JS: We don’t consume recreationally, so we don’t have any experience there. We do use a wonderful hemp CBD product called Receptra Targeted Topical, and it works great for aches, bug bites, moisturizing, and cramps. But regardless of the recreational program, we have always been nervous about the medical supply. We want the law changed to require cultivators to continue to make the medicines that we rely on. We’ve been to so many dispensaries in the state, scrambling around to find the specific products for Ashley. Legislation around availability is in the works with Rep Bob Morgan.
Another major problem is insurance coverage. Our premiums keep going up, while Ashley has not needed the extremely expensive care or prescriptions. The insurance pays out so much less now but still won’t cover the medicine that made Miracle & Ashley’s Law possible. We even have some well-connected doctors and insurance execs in the family, but they keep saying, well, this is a new medicine so it takes time. We don’t have time. It’s been 5 years in the program. It’s time. Our daughter needs so many extra resources. With us in our 50s, we need to have assurances that things will advance with reliable safe access, to know that Ashley will have what she needs and be taken care of. That’s pretty hard to do when paying fully for her essential medicine. It should not be medicine for the rich. It needs insurance which is a nice transition to your next question.
KV: How would you like consumers to advocate?
M&JS: That’s a big one. First, we should de-schedule, and that would take barriers away from research. Healthcare professionals want studies were done that meet the FDA requirements so that they can safely prescribe it. Next, we need insurance coverage. And we need to be able to live without looking over our shoulders, wondering if we’ll be prosecuted for crossing a state line, or anywhere else. ( Disney maybe)
More importantly than all of that, the thing that worries us most is the supply. Ashley’s medicine prevents seizures. Seizures can be fatal. Imagine worrying that you won’t have the money or the correct cultivar that works with your specific biology and conditions. We’re working with Rep. Bob Morgan on that and we see and talk to Rep. Michelle Mussman regularly about securing the guarantee that Ashley’s medicine will be there.
And lastly, back to education. Imagine how many people, teachers, and doctors, that we have personally had to educate about cannabis. They are open to it and really want that education & regular training. It should be very accessible everywhere, in libraries, schools, and medical schools. Maybe schools now need a cannabis specialist.
Before we let you go, we want to share a story that gave us tears of joy. Ashley wrote a whole list of gifts she wants for Christmas!! That may seem small to everyone else, but we know for sure that nothing like that would have been possible without cannabis. We were grateful to have the seizures eliminated, but here she is living, growing, interacting, speaking, writing, and learning way beyond what anyone would think is possible after her leukemia, chemo, seizures, and concussion. It’s hard to be patient when we know how many people could get a fraction of the relief and life quality that cannabis gave us.
Ashley isn’t just surviving anymore. She is living because of this MOST AWESOME PLANT!
Time for another huge Ashley’s law so legislation can catch up with reality.
Kirsten Velasco is a founding member of the CCC Executive Board and author of Cannabis Basics Textbook, and a veteran of cannabis education. As a volunteer board member of Illinois Women in Cannabis for 5 years, she executed 12 industry events (with press coverage), and two all-volunteer statewide education campaigns while independently providing 150+ cannabis programs and submitting 150+ patient applications. She continues to strategically create concentrated, easy-to-consume information, customized to address benefits and encourage action in an attention-deprived society.
