An open letter to DSHS regarding tcup program.

Dear Governor Abbot and Dr. Hellerstedt,

I am a pediatric neurologist and epilepsy specialist practicing in Houston. I have experience with the TCUP for over 1 year and manage over 80 patients on cannabanoids (including Epidiolex). I am also a parent of a child with a neurogenetic disorder.

Today the DSHS will take public comment on a puzzling list of selected conditions where medical cannabis may be allowed in Texas.

While well-intentioned, the "list" appears to be far from ready to deploy. 

•  Many illnesses are inexplicably omitted. One glaring omission in my 1 minute review is  ataxias. What is the evidentiary basis for inclusion the list?
• Pediatric illnesses such as SMA and muscular dystrophies are listed under "Incurable Neurodegenerative Diseases with Adult Onset". Does the adult-pediatric division on the list imply that people with SMA (a pediatric illness) cannot get CBD until they are adults?  The distinction makes no biologic sense.
• The specificity of this list is problematic. The era of genetic sequencing has opened our eyes to thousands of low denominator disorders that are progressive and incurable.  New conditions are genetically defined rapidly with daily changes. How often will DSHS update this list to keep pace? 
• Many progressive degenerative disorders are still NOT diagnosed at a level of specificity demanded here.  For instance, people can have a leukodystrophy without a specific diagnosis.   There is no test for these conditions that, in sum, are not rare. If doctors cannot come to a genetic diagnosis, are patients not allowed to seek relief ? Do you really want to commit staff to review charts or trust the doctors?
• The decision to treat should be one between a doctor and patient.  Conceptually, one wonders why DSHS is deciding that a person with Refsum disease is meritorious but not one with Rett Syndrome? 

Ultimately,  from a policy perspective the list will usher a blizzard of “what about me” requests and an understandable outpouring of accusations of arbitrary insensitivity.

Further, the list is an assault on the practice of medicine. Physicians can prescribe narcotics, chemotherapy and many other toxic agent. But, it seems odd that government will decide who has an incurable neurodegenerative disorder?

Perhaps the list should include a general statement allowing a physician to decide e.g. “All Other neurologic disorders of  genetic, inflammatory, oncologic, metabolic, vascular and/ or idiopathic etiology”? 

Dr. Rotenberg