Parents concerned over controversial amendments to Leni’s Law

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HUEYTOWN, Ala. (WIAT) — UPDATE: Leni’s Law expected to be signed into law by Governor Bentley with no changes.

ORIGINAL: The Alabama House has approved Leni’s Law, but supporters of the bill aren’t satisfied. In fact, many are worried.  Amendments made by the House Judiciary Committee have some parents concerned about access and effectiveness of the marijuana oil that would be allowed under the proposed changes.

Six year-old Kenna Townsend has to take a handful of pills every day to cope with epilepsy.  Her mom, Brittany, says she still has a seizure almost every day.  “We’ve tried so many medicines, and they just work for the first week or so, and then they stop,” she explained.

That’s why research and success stories about medicinal cannabis oil appealed to Townsend.   She referred to another little girl from Alabama, Leni Young, who experienced a significant change in her quality of life since she started taking the CBD oil under her doctor’s care.  “She has progressed beyond anything that we ever were told was possible for her,” explained Leni’s mother, Amy Young, in a phone interview with CBS 42.

The Young family moved to Oregon last summer so that Leni could legally take the CBD oil to control her seizures.  Young said that her daughter was not eligible for the Carly’s Law study conducted at UAB.  She also needed a higher percentage of THCA than what was provided in the study.

However, Leni’s story inspired a law currently before Alabama lawmakers.  If Leni’s Law passes, the Young family may be able to come home to Alabama some day.  Leni’s Law would decriminalize medical marijuana oil when prescribed by a doctor and used to treat people with a variety of debilitating diseases and conditions.  It would also allow patients or their guardians to possess the oil with up to 3% THC.

However, the Alabama House of Representatives made some amendments in their vote to approve the bill.  The changes would include changing the amount of THC allowed from 3% to 1%.  It would also make the oil only eligible to people with epilepsy.

Even though her daughter would still be eligible for the cannabis oil, Townsend is worried about the amendments.   “It scares me,” she said.  “The one percent is not even the biggest deal.  It’s excluding so many others that can’t even get the one percent.”

Townsend said she also wants to see the percentage of THC raised back to 3% because she wants for her daughter to have access to every option for treatment.  “The people that are against it…they just don’t understand either the research, or they haven’t done the research,” she said, “and they don’t have to live with it everyday.”

Alabama’s chapter of the American Academy of Pediatrics are among those who oppose Leni’s Law.  “Our position basically is, we don’t know yet exactly how these kids should be treated and what should be the recommended dose,” said Dr. Cathy Wood, President of the Alabama Chapter, “and then there’s a lot that we don’t know, and this is allowing things to happen a lot more rapidly than they should.”

“I mean, I think everybody wants to pursue medicine in a way that it improves the life of patients who have really terrible problems,” Wood continued, “but this sort of thing does jump the gun.  It jumps over the mark that you try to make in every aspect of how you care for patients.”

The bill’s sponsor, Rep. Mike Ball, said he feels hopeful that they will be able to work on Leni’s Law to get it to a place where it would actually be helpful to as many people as possible.  However, he notes that the bill is not satisfactory as it stands with the amendments. “A lot of the fears that I’ve heard are vague fears,” he said, “and certainly not substantiated fears of this, and the reports that I’ve gotten from people who have had positive experiences are very real.”

Ball said that he hopes to get Leni’s Law on the Senate floor early next week.

Read the full statement from American Epilepsy Society:

AES Position on Medical Marijuana

Updated March 21, 2016

Three million Americans live with epilepsy. One-third of these people have ongoing treatment-resistant seizures. As the leading organization of clinical and research professionals specializing in the treatment of this challenging spectrum of disorders, the American Epilepsy Society (AES) supports all well-controlled studies that will lead to a better understanding of the disease and the development of safe and effective treatments for epilepsy.

The anecdotal reports of positive effects of the marijuana derivative cannabidiol (CBD) for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that anecdotal reports alone are not sufficient to support treatment decisions. Robust scientific evidence for the use of marijuana is limited. The lack of information does not mean that marijuana is ineffective for epilepsy. It merely means that we do not know if marijuana is a safe and effective treatment for epilepsy, which is why it should be studied using the well-founded research methods that all other effective treatments for epilepsy have undergone.

There is great interest within the professional community to explore the potential of CBD and there are several clinical and basic research studies now underway. Every case of epilepsy is different and the disease is highly variable. Scientific studies help the entire epilepsy community to understand how and why various treatments work and for whom they are effective. Research also helps us understand the correct dose, side effects, and potential interactions with other medications. AES is highly supportive of these rapidly advancing research efforts.

AES calls on government and private funders to support well-designed clinical research into all promising treatments for epilepsy. To increase clinical research into the effectiveness and safety of marijuana as a possible treatment for resistant epilepsy, the American Epilepsy Society urges that marijuana’s status as a Federal DEA Schedule 1 controlled substance be reviewed. AES’s call for rescheduling is not an endorsement of the legalization of marijuana, but is a recognition that the current restrictions on the use of medical marijuana for research continue to stand in the way of scientifically rigorous research into the development of cannabinoid-based treatments.

The American Epilepsy Society is very sympathetic to the desperation of parents whose children have severe, treatment-resistant epilepsy. Our members, face these families daily at the clinic and at their bedside and are highly attuned to the need for compassionate use of promising new therapies in appropriate and controlled circumstances. AES urges all people touched by epilepsy to consult with an epilepsy specialist and explore the many existing treatment options, so that they can make informed decisions with their specialist that weighs the risks and benefits of the different treatment options.

About the American Epilepsy Society

The American Epilepsy Society is a medical and scientific society whose members are engaged in research and clinical care for people with epilepsy. For more than 75 years, AES has provided a dynamic global forum where professionals from academia, private practice, not-for-profit, government and industry can learn, share and grow. 

– See more at:https://www.aesnet.org/about_aes/position_statements/AES%20Position%20on%20Medical%20Marijuana#sthash.QwxUpXSo.dpuf

Click here for another informational link provided by AES:  Dr. Bertha Madras: https://vp.telvue.com/preview?id=T01221&video=263607

To read more about UAB’s first findings from their studies on CBD Oil, click here: http://www.uab.edu/news/innovation/item/7060-uab-presents-first-results-of-cbd-oil-studies-at-neurology-meeting

And find more on Leni’s Law on Facebook at https://www.facebook.com/Lenislaw/

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