Wednesday, September 11, 2019

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 

Tuesday, September 10, 2019

Texas Medical Cannabis - Does Your illness Qualify? The DSHS will decide.

What are Incurable Neurodegenerative Diseases? 


The DSHS will decide if you or your loved one's illness is important enough to qualify for medical cannabis. DSHS will decide if the condition incurable enough or degenerative enough.  Wow. 

Contact your legislator and governor. JR


Here is a link to the proposed rule 

https://www.dshs.state.tx.us/features/HB3703/proposed-rule.pdf



Notice of Public Hearing - Implementation of House Bill 3703

Proposed New Rule Relating to Designating Incurable Neurodegenerative Diseases

The Department of State Health Services (DSHS) will hold a public hearing to accept public comments on the proposed new rules to implement House Bill 3703, relating to designating incurable neurodegenerative diseases.
The public hearing will be from 1:00 p.m. to 3:00 p.m. on September 11, 2019, in the Moreton Building, Room M-100, Department of State Health Services, 1100 West 49th Street, Austin, Texas 78756. If the time allotted does not accommodate the number of persons who register to speak on or before 3:00 p.m., DSHS will extend the public hearing to accommodate those registrants, however, that extension will only be until 5:00 p.m. on that date. 
The public hearing will be structured for the receipt of oral or written comments by interested persons. Individuals may present oral statements when called upon in order of registration. There will be no open discussion during the public hearing. Comment time for each individual will be determined by the total number of persons registered to speak in the time allotted.  If time permits, comments will be limited to 3 minutes per speaker but may be further limited by DSHS if more registrants need to be accommodated.

Saturday, September 07, 2019

Trans Cranial Electric Stimulation Tdcs Literature Library

Tdcs  involves the cortex and subcortical networks 

TDCS Article Library

 Often, patients ask me for the latest literature on transcranial direct stimulation.

 Here are links to my library of abstracts from PUBMED at the National Library of Medicine

 I update the site from time to time so please check back.

Dr Josh

Basics - https://en.wikipedia.org/wiki/Transcranial_direct-current_stimulation


Ataxia - LINK to articles on TDCS and ataxia

Autism - LINK to articles on autism and TDCS TES

Brain Injury - LINK to Brain Injury

Cerebral Palsy - LINK to CP Articles