Category: strong communities

This letter is posted for reference in work I have performed or been involved in.

January 29, 2019 – Following the successful 2018 vote for Prop 3 to expand Medicaid in the state of Utah, the Senate introduced bills to repeal the Medicaid rollout for Utahns. An interesting article on this subject was published in 2024: It keeps people with schizophrenia in school and on the job. Why won’t insurance pay? (NPR)

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To: Stuart Adams; David G. Buxton; Jani Iwamoto; Luz Escamilla; Allen Christensen; Scott Sandall; Ron Winterton
Cc: Lincoln Fillmore
Subject: Please vote no on SB96 and SB97

Hello Committee Members – 

I’m writing to ask that you vote “no” on the two current bills that attempt to repeal Medicaid expansion. 

I am the father of an adult son who has been diagnosed with paranoid schizophrenia.  I have been working since November 2018 to help him sign up for Medicaid, and are in limbo waiting for an approval that would allow him to begin treatment at Valley Mental Health – a medicaid only facility.  

I have been thankful for my company-provided insurance but know that he is losing coverage as he ages out of that system.  We are struggling to find coverage with adequate mental health counseling with prescriptive support that he needs.  

My reality is that without treatment he will lose the support he currently has.  The ability to receive support through a Utah-based medicaid program will literally be life-changing for him. 

Respectfully, 
Gregory Green

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Gregory,

Thanks for your email. Thank you for sharing your son’s story. My wife’s late brother had the same disease until he passed away in 2015. I understand your difficulties, though not as well as my wife and her parents do. To help people like your son, I’m running a separate bill (SB39) to provide new funding and a new way for you to get treatment for your son, especially as he ages out of eligibility on your insurance plan.

Regarding Prop 3, I am confident that expansion will move forward in a way that provides more options for your families, but it will necessarily look different than what was on the ballot in November. Unfortunately, that program is projected to run a deficit of more than $150 million over five years. That deficit has to be closed, because our constitution does not allow for an unbalanced budget. In order to close the gap, I see four options:

1. Repeal the initiative
2. Raise taxes beyond what voters approved in the initiative.
3. Cut funding to other programs (like education, transportation, public safety, or air quality) that voters did not approve in the initiative.
4. Restructure the initiative so that it can be implemented in a more efficient way and reduce costs to fit the taxes approved by voters.

Each of those would change what was approved by voters. Which do you prefer? Or, do you see another option that I’ve missed?

Thanks,
Senator Lincoln Fillmore

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Hello Lincoln – 

Thank you for the link to https://le.utah.gov/~2019/bills/static/SB0039.html. I am reading through that now. 

I’m not sure why Prop 3 has to be necessarily different than what was on the ballot.  I don’t have any conflicts with Prop 3, and generally support its increase of  the state’s sales tax by 0.15 percentage points (from 4.7 percent to 4.85 percent) to fund Medicaid expansion costs. According to https://gardner.utah.edu/wp-content/uploads/Medicaid-Brief-Final-Aug-2018.pdf the cost to Utah would only be $77m.  Please tell me what analysis projects costs of $150m? Regardless, the federal funds made available through this are significant, and are currently unavailable.  An attempt to repeal Prop 3 goes directly against the will of voters and would obviously be challenged in courts by us.  Your third option doesn’t have to happen if the tax increase is implemented, and the fourth option would obviously be entertained where improvements that improve the efficiency of the Medicaid rollout can be made.  

Thank you, 
Gregory Green

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Greg,

In Prop 3, the voters approved Medicaid expansion for a set amount of money. Unfortunately, the money, after the first year, won’t cover costs. Anything we do to close that gap changes the initiative. We could raise more taxes. (SB96 does that.) We could take money from other programs (SB96 does that, too) to cover some of the gap. We could also restructure service availability so that people that are eligible for access under non-Medicaid programs get that coverage first. (SB96 does that, too.)

The federal funds available for Medicaid expansion are more than $1 Billion per year in 2024. And the sales tax increase approved by voters brings in another $105 million. And savings from the expansion are another $40 million per year. Yet, with all that, there is still a $65 million deficit in year five, which makes the cumulative deficit over that five year period over $150 million.

The tax approved by voters is simply not enough to fund the program the way it’s structured. Even the initiative’s sponsors acknowledge this. They’d just prefer that we take money from other programs to pay for the expansion, which is their top priority. It may also be yours. However, I think that SB96 strikes the right balance of providing access to health care for all Utahns within the funding authorized by voters.

Thanks,
Senator Lincoln Fillmore

Note: I contest the numbers that Lincoln provides in his response, which is contrary to research on fiscal impact published by third parties at that time.

This letter is posted for reference in work I have performed or been involved in.

September 5, 2014 – A letter of support written for congressional bill H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014. Submitted through POPVOX.

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I’m writing as a father of a daughter with cerebral palsy and epilepsy. I want to urge your support of H.R.5226 – Charlotte’s Web Medical Hemp Act of 2014 to amend the Controlled Substances Act to exclude therapeutic hemp and  cannabidiol from the definition of marijuana.

My daughter suffered an inutero stroke and was born with cerebral palsy.  Her first seizures started at approximately 8 months of age and have only ever been partially controlled with a combination of prescribed medications and a ketogenic diet. The type and frequency of seizures has changed over time, and in 2010 became so aggressive that she would become unresponsive, stop breathing and turn blue during a seizure. Each time this happened we were helpless as parents.  Each time it was like preparing to watch your child die in front of you.  In 2011 we were fortunate that our daughter qualified for a brain surgery (Pediatric Peri-Insular Hemispherotomy) which severed the nerves connecting the stroke-damaged side of her brain.  The surgery successfully stopped her seizures. It has been 3 yearsvthat our daughter Natalie has been seizure free, and it still makes me emotional to talk about this because my family knows what it’s like to fight for someone you care so deeply about to not have seizures. 

We continue to be involved in the Epilepsy community, and continue to advocate for people who have seizures. This House Bill is significant because through it comes a therapeutic solution for U.S. citizens that offers tangible and evident relief from seizures which are otherwise not controlled by medicine.  There is stigma around the treatment because the oil is derived from a form of cannabis; however the amount of THC in the hybrid used is low enough to meet the federal definition of industrial hemp.  The medicine is oral and is not psychoactive.  CBD has significant neuroprotective properties, while causing fewer side effects than anti-seizure medications. 

Please show support for this bill when it comes your time to weigh in.  This bill offers hope to families whose lives are impacted by epilepsy.  This is a viable treatment to significantly reduce seizures for some people who are not otherwise able to control their seizures.  It is a safe treatment which has growing evidence of success.  

This letter is posted for reference in work I have performed or been involved in.

28 June 2014 – a letter to the U. S. Department of Health and Human Services requesting to reschedule marijuana on the DEA list of Controlled Substances

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The Honorable Sylvia Mathews Burwell, Secretary
U. S. Department of Health and Human Services
200 Independence Avenue SW, Washington, DC 20201

Hello Sylvia –

I’m writing to you as a father of a daughter with cerebral palsy and epilepsy. I want to urge your support to change policies to support research of marijuana and to recommend that Attorney General Eric Holder reschedule marijuana on the DEA list of Controlled Substances to make it more accessible for compassionate use and research.

My daughter suffered an inutero stroke and was born with cerebral palsy. Her first seizures started at approximately 8 months of age and have only ever been partially controlled with a combination of prescribed medications and a ketogenic diet. The type and frequency of seizures has changed over time, and in 2010 became so aggressive that she would become unresponsive, stop breathing and turn blue during a seizure. Each time this happened we were helpless as parents. Each time it was like preparing to watch your child die in front of you. In 2011 we were fortunate that our daughter qualified for a brain surgery (Pediatric Peri-Insular Hemispherotomy) which severed the nerves connecting the stroke-damaged side of her brain. The surgery successfully stopped her seizures. It has been 2 years and 11 months that our daughter Natalie has been seizure free, and it still makes me emotional to talk about this because my family knows what it’s like to fight for someone you care so deeply about to not have seizures.

We continue to be involved in the Epilepsy community, and continue to advocate for people who have seizures. Utah was one of the first states to pass legislation that allowed use of CBD oil as a therapeutic solution that offers tangible and evident relief from seizures which are otherwise not controlled by medicine and diet (much thanks to Utah State Representative Gage Froerer for sponsoring HB0105S09). Still, I have friends in and out of the state who have children with Lissencephaly and Dravet Syndrome who are waiting for legislation, or are on a waiting list to be treated. I know one family that moved to Colorado just to become eligible for Charlotte’s Web. It is heartbreaking to know that there are barriers to a seizure treatment that would improve quality of life and save lives.

Please show support for research of marijuana when it comes your time to weigh in, and urge Eric Holder to reschedule marijuana on the DEA list of Controlled Substances. Your stance on this topic and changes in DEA policy can offer hope to families whose lives are impacted by epilepsy. There are viable treatments to significantly reduce seizures for some people who are not otherwise able to control their seizures.

Thank you,
Greg Green