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.
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| 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.
I am happy we are making new, good memories of June’s birthday. Last year June’s birthday was difficult for me not just because June was on ACTH, but also because June’s birthday made me sad. The night June arrived was so wonderful and then it was followed by the worst day of my life when June didn’t pass the newborn hearing screening. It was the first of many tests that would come back with bad news and more questions. I left the hospital with our newborn baby girl terrified of what the test meant and no one could give me the reassurance I needed. So in a way June’s birthday is almost a reminder of a dream that I lost the day after she was born. But as life unfolds, I’m seeing things are shaping out to be far better than what I could have ever dreamed despite all the hardships we have endured. We are exactly where we are supposed to be.
Sometimes I imagine talking to myself two years ago as a new mom riding in the backseat of our car sitting next to June as Matt drove us home for the first time. In this image in my mind, I'm whispering in my ear as I hold June's hand, "It will be okay. You will be okay." That's what I wanted to hear then. I was looking to doctors and family members to tell me that it will be okay and no one could then. But I can now. It will be okay because you will make it okay. 
I could never have imagined the love we feel for June and each second we love her more than the last. I am blessed to be her mommy because she is my teacher on unconditional love, perseverance, and just being present. She is amazing. Here’s to June and new memories of such a wonderful day!!