Guest Opinions

Guest Opinion: Mother of girl with Dravet Syndrome laments Otter veto of cannabidiol oil bill

On April 6, Alexis’ Law, named after my daughter, passed the Idaho House of Representatives, giving a pathway for those with intractable seizure disorders to try cannabidiol oil, and perhaps have some relief from seizures. It was an emotional moment for me, but strangely solemn, too. In an instant, I felt exhausted. As someone with no experience with the legislative process, the past 18 months have been fascinating, frustrating and at times overwhelming.

While the majority of those with epilepsy will find a medication or diet to control their seizures, about 30 percent will not respond to any treatment. For these people, cannabidiol oil could be one more treatment option to try when so many others have failed.

My eldest daughter, Alexis, is 10 years old. She has Dravet Syndrome, a rare and catastrophic seizure disorder for which there is no effective treatment. At 2 months old she had her first seizure. It would be the first of thousands. She has tried more than 15 seizure medications, to no avail.

It’s been a hard story to tell over and over again. In both the Senate and House committee hearings, I shared a video clip of Alexis when she was 5 months old having a seizure that lasted 16 minutes. It was hard to stand there and relive those minutes. Despite holding her through thousands of seizures, it never gets any easier. But it was important to show the committee members what my daughter must constantly endure in the hope they could understand why it was so important for her, and for all those in Idaho with uncontrolled seizures, to have access to this treatment option.

Supporting this bill was easy for some legislators, difficult for others, and impossible for some. But everyone had compassion. Even those who testified against the bill expressed their compassion and sympathy for those who suffer with severe seizure disorders.

However, it was empathy that brought us to this point. Most legislators were open-minded and willing to meet with families advocating for this bill. Most could quickly understand why we would want to try cannabidiol oil. Most knew what they would do if this were their child. But it took empathy to follow through and support this bill. I consider empathy to be one of the greatest characteristics. I was overwhelmed when I realized that both chambers of the Legislature had supported a bill that pretty much everyone thought they never would.

Then sadly, on April 16, Gov. Butch Otter chose to veto Alexis’ Law. It was a crushing moment for my family and for all those who have been advocating for this law.

The governor’s veto letter on Alexis’ Law was incorrect and misinformed on several issues. That might be partly due to his refusal to meet with family members. We may not be appointees to an agency, but we are educated and motivated to do extensive and thorough research into any treatment that may help our children. That is why physicians view families and patients as part of a team.

Alexis’ Law did not legalize cannabidiol oil. It provided an affirmative defense if a parent was arrested for possessing the oil. The governor’s claim that patient outcomes are more speculative than scientific shows a lack of understanding of the current preclinical, anecdotal case studies, and clinical studies that do support the use of cannabidiol oil to reduce seizures. And to suggest that the fiscal note was purposefully incorrect questions the integrity of the legislators that we elect to office.

It is unfortunate that we must now look to Washington, D.C., to help those in Idaho suffering from intractable seizure disorders.

Clare Carey lives in Boise with her husband and three children.