No August recess for our families

39 days of recess.  For members of Congress, this will be time away from their posts in Washington, an opportunity to reconnect with their districts or states, and a period that indubitably will be lamented in hindsight as having passed all too quickly.  But for our families, and the children who suffer from intractable epilepsy, each of the 39 days will seem like an eternity.   

For many of our families, 39 days will mean watching children suffer thousands of seizures, each sending these children into unbearable physical trauma, and taking their families’ households to the top and bottom of a life-or-death roller coaster ride that they so desperately want to stop.  To our families, 39 days may mean 39 sleepless nights and perhaps even funerals.  And for those unable to transplant their families to seek the only therapy known that could quiet the seizures, it will be 39 more days bound within their state borders without access to hope.   

{mosads}Our families have pleaded with Congress over the past year to not let August recess arrive without taking action that simply would permit states in which our families reside to access harmless cannabidiol (CBD) oil – a hemp extract – for its proven anticonvulsant properties.  There is no legitimate reason why CBD remains a Schedule I Controlled Substance, and Congress has lagged terribly behind a wave of common sense that has swept across the country, resulting in 15 states, including Texas, Georgia, Virginia, Wisconsin, and Tennessee, enacting laws that allow access to CBD for seizures.  But without congressional action, our families cannot obtain CBD without violating federal law.   

While our families have witnessed tremendous leadership from many prominent members of Congress, including Sens. Wyden (D-Ore.), Hatch (R-Utah), Alexander (R-Tenn.), and Gardner (R-Colo.), as well as Reps. Perry (R-Pa.), Dold (R-Ill.), and Paul Ryan (R-Wis.), many in Congress have struggled to grasp that CBD oil is a benign natural substance with no toxicity or side effects, and offers no ability to achieve any psychoactive effect.  Nor have many of our representatives been able to differentiate between CBD and the debates regarding recreational and medical marijuana.  Many politicians have told us that we must wait years while CBD is researched – while they fail to understand that those years most likely will mean the death of our children.  Their unnecessarily tepid protection of the status quo is unacceptable, and our pleas are not to them as members of Congress, but as parents and fellow human beings.  

For my daughter Charlotte, it always started the same.  A piercingly loud, deathly noise, an agonizing shriek of terror and pain, as the air is forced violently out of her lungs, followed by her body becoming completely stiff.  My family called it the “death scream.”  This scream would soon be followed by violent convulsions, often a failure to breathe, eyes rolled back into her head, and a blue and lifeless color to her face.  We would try to give her oxygen, but without her being able to inhale, it rarely helped.  As these seizures ravaged her brain, all we could do was clutch her in our desperate attempt to comfort her and to restrain her flailing limbs so that they would not cause her even more injury.  We would repeat this horrific sequence often 40 or 50 times per day.  We found ourselves quite often at a point of breaking and fatigue and began to believe that her passing might be the only way that she could find peace.    

For Charlotte, like many who suffer from intractable epilepsy, all of the medicines had failed, and worse, their severe toxicity caused her brain damage.  Had our family not found CBD, it is a fact that Charlotte would no longer be with us.  With a few drops of CBD, Charlotte went from the precipice of death and 300 grand mal seizures per week, to nearly zero.  Over the subsequent weeks and months we watched our daughter come back to life and blossom.  And nearly four years later, CBD has enabled Charlotte to ride a bike, play like other kids, and get to know her family for the very first time.   

CBD has been a miracle for us, but for the tens of thousands of families do not have access to this option.  In states where CBD is not cultivated or where access laws have not yet passed, those families will continue to suffer each of the 39 days of the congressional recess, or make the crippling choice of transplanting their families to Colorado or other legal states as medical refugees.  It doesn’t have to be this way.   

Doing what is best for our children should not depend on our zip codes.  As Americans, we should never tolerate any law that forces parents to choose between prosecution and the well being of our children.  

Seizures never take a recess.  Nor should Congress until this is fixed. 

Figi is the executive director of the Coalition for Access Now, which represents thousands of families across the country in their efforts to gain access to CBD therapies for loved ones suffering from debilitating illnesses.

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