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Thursday, April 10, 2014

Little Lobbyist

On Tuesday, the Jessees went to Jefferson City, MO so that I could testify before the House General Laws Committee on a House Bill that was introduced last week by Representative Caleb Jones and is supported by Senator Eric Schmitt.  The bill would allow children and adults with intractable epilepsy to legally access high CBD oil, such as Charlotte’s Web. 
June on her way to Jeff City

We are so lucky to have two strong advocates in the House and Senate. Caleb and Matt have been friends for a long time and when he and his wife, Lindsey, found out we were moving to Colorado to access Charlotte’s Web he asked how he could help us and other families in Missouri going through our same struggles.  Matt and I became close with Eric and his wife, Jaime, after June was diagnosed with Infantile Spasms.  Their son also has intractable epilepsy and they have been so helpful to us on our special needs journey.

Below is the text of my testimony that I want to share with you all. I am pleased to report the bill passed the General Laws Committee by a vote of 11-0.  The next step is for it to go to the Rules Committee and then for a vote on the House Floor.

A few people have asked us if we will still move to Colorado if this legislation passes and we will.  We are not sure how long it will take for the law to be implemented and June needs this medicine now.  It will allow us to come back to Missouri though and that makes the move away from our family and friends a little easier. As always, thank you for your support!

Testimony on House Bill NO. 2238 - House General Laws Committee
April 8, 2014

Thank you Mr. Chairman and members of the committee. My name is Genny Jessee and I am the proud mother of June Jessee.  June is almost 2 years old and has intractable epilepsy which means medicine has not worked to control her seizures. We saw her have her first seizure when she was only 2 months old and ever since then we have fought tirelessly to make them stop. June is a sweet girl.  She smiles, laughs, and squeals, but she can’t do things other kids can even though she works very hard – harder than I’ve seen anyone. She can’t sit, crawl, walk, or talk. She spends most of her time in doctors' offices, the hospital, and therapy sessions and has been through much more in 2 years than some people endure in a lifetime.  In short, June is severely developmentally delayed because her daily seizures interrupt her brain from making the connections that come easily to you and me.  June is why I am here today to talk to you about cannabidiol oil, also know as CBD oil, which is made from a strain of medical marijuana that could save June’s life along with thousands of other children here in Missouri suffering from intractable epilepsy. I believe that CBD oil should be legally available to citizens in Missouri because of three important facts. First, it is showing to be safe and effective.  Second, we, and many other Missouri families, are out of legal medical options, and third, its use should be a choice left to a patient or caregiver, and his/her doctor without the interference of government.

CBD oil is a safe and effective option for children with difficult to control seizures. CBD oil comes from a hybrid strain of marijuana that is low in tetrahydrocannabinol also know as THC, which is the psychoactive ingredient in marijuana, but rich in CBD. Its medical potency is due to its high CBD content. High CBD plants have shown results in reducing and stopping seizures in children with intractable epilepsy with minimal side effects. The plant is made into an oil and given to children by mouth either via a syringe or in food. This plant and oil is not smokeable and has no recreational potential because it does not produce a “high.” Additionally, the plant is grown organically and the medicine is tested for dosing as well as molds, pesticides, and solvents.

Pre-clinical data indicates the side effects in CBD oil and related products are very limited or non-existent.  This factor alone is remarkable considering most seizure medications have horrific side effects that could include intense drowsiness, irritability, slowed thinking, dizziness, memory problems, trouble concentrating, problems with speech or balance, kidney stones, acidosis, weight loss, weight gain, sleeplessness, vision loss, irregular heartbeats, feeling like you might pass out, diarrhea, constipation, and even death. In fact, I remember very clearly sitting in June’s neurologist office as he recommended a drug called ACTH that could kill June.  He told us the risk of death was real and scary but he thought the potential benefits outweighed the risk of death.  When a doctor suggests a drug that could potentially be fatal, it puts other drug risks into perspective.  In addition to being safe, CBD oil is showing to be effective. The anecdotal evidence of patients and families is that CBD oil results in remarkable seizure control with improvements in quality of life.

In addition to being safe and effective, CBD oil is another tool for families living with this devastating diagnosis when they have run out of time and options. Children with intractable and catastrophic forms of epilepsy have already tried and failed all the medications available to them. We’ve tried and failed 11 different medications along with the ketogenic diet. As mentioned earlier these treatments come with horrific side effects. Despite the risks, we tried these treatments because the doctors told us the possible benefits outweighed the risks, even when the possibility of a drug or diet working was only 2 -3%.  In addition to these traditional therapies we have also seen a homeopathic doctor and we visit a chiropractor regularly.  Basically, we have tried everything we legally can.

After June’s neurologists suggested we retry medicine June has already tried and failed we decided we needed to move to Colorado to start June on the CBD oil, because we believe we should try something new rather than try a drug that we already know did not work well. Where is the science in that? It is unfortunate that we have to move to Colorado to get June this much-needed treatment but the state of Missouri legally prohibits us from accessing this medicine for June.

My final point I would like to make is the use of CBD oil should be choice left to a patient or caregiver, and his/her health care provider without the interference of government.  As I said earlier June and the thousands of other children here in Missouri do not have time to wait for this medicine to become FDA approved. Science doesn't always lead the way. Frequently there is a painstaking period while science takes a great deal of time to substantiate or rule out what may be fact. We don't have the luxury of that time. That's when factors such as anecdotal evidence and risk/benefit ratio need to be considered without government intrusion. The way we have already gone about treating June’s seizures is not science. There was no method behind which medicine or treatment we tried first. When diagnosed, June’s neurologist asked my husband and me which treatment we wanted to try first and subsequently the choice was always ours based on the information provided to us. I believe we have that same right in this instance as well.

Opponents may say, “Why not enroll June in a trial.” Well, it’s not that easy. The studies underway are too small because the Government holds harsh restrictions on the number of patients allowed in the study making it nearly impossible for children to get access to studied medication via a clinical trial.  

Opponents also may say to “stick with the medicines that are approved by the official process and we shouldn’t try to take short cuts.” To that I say, we’ve already tried what there is to offer, and imagine what you would do in our situation? If your answer is different than ours, then if you are faced with our circumstance, you have the right to refuse treatment. I choose to try everything we can to possibly save June’s life and I should have the right to make that choice with June’s health care provider without the interference of government and other public interest groups that have nothing to do with the issue we are discussing. The irony in this argument is pediatric neurologists and physicians routinely recommend substances to their patients that are not FDA-approved medications. ACTH was not FDA approved for Infantile Spasms until 2010, but it is the frontline medication for treating infantile spasms and neurologists have been using it as such for decades. Skeptics also may say we don’t know if CBD oil will work, but we didn’t know if the 11 medications June already tried would work. I understand that is a very real possibility, but I am hoping with every ounce of my being that it will offer some relief.  

Our children are counting on us to do the right thing for them. This is not a difficult decision.  CBD oil is safe and effective, it is giving families hope when they no longer have medical options, and finally, it is putting the treatment decisions in the hands of patients, caregivers, and doctors rather than in the hands of policy makers. Saying yes to this proposed bill would be saving June’s life. Thank you for saving June and thousands of children just like her.

1 comment:

  1. Extremely well argued, Genny. Your points are clear and backed up with impeccable reason. Drug scheduling in the US is controlled by the DEA, not by a democratic process. Thank you for testifying and helping this country to regain some sanity in its drug laws.