Epilepsy Association of Utah


Epilepsy Association supports 2015 Legislative efforts

For Immediate Release

EAU & H4CE Announce
Support of HB94 “Right to Try” & HB199 “Pilot Program
Assistance for Children With Disabilities & Complex
Medical Conditions”
SALT LAKE CITY, Utah – Monday,
February 9, 2015
Epilepsy Association of Utah and Hope 4 Children With Epilepsy announce their
support of HB94 “Right to Try” & HB199 “Pilot Program for Assistance for
Children with Disabilities and Complex Medical Conditions.”
Gage Froerer’s HB94 “Right to Try” would allow terminally ill patients access
to treatments not yet approved by the FDA. Patients are required to try all
viable approved options before moving to an experimental treatment, and the new
treatment must have completed Phase 1 trials. Pharmaceutical and insurance
companies are allowed, but not required, to provide these treatments and may
charge patients only the manufacturing cost.
Might, mother of an H4CE child and executive director of the NGLY1 Foundation,
explains the dire situation for those with rare terminal illnesses. “Bertrand
is going to die without treatment–slowly going deaf, blind, wasting muscles,
losing nerve and brain matter. And maddeningly, we know for a fact that a drug
in clinical trials called EPI-743 does a partial rescue in his cells (and that
of all the other kids with NGLY1). The FDA guidelines were written for a
different era. They have not caught up with the advances in technology that
make precision treatments possible. A “right to try” has gone beyond
being a “right for hope”.  With
new medical breakthroughs, it is the right to an effective, existing
HB199 “Pilot Program for Assistance for Children with Disabilities and Complex
Medical Conditions” sponsored by Rep. Ed Redd, the bill directs the Department
of Health to apply for a Medicaid waiver for children with disabilities and
complex medical conditions. Currently, very few people served by the Division
of Services for People with Disabilities are children. The wait list is many
hundreds of people long, and those with complex medical conditions do not
qualify if they are without intellectual disability.
on the wait list have incomes too high to qualify for Medicaid, yet the
financial, physical and emotional burden of caring for a disabled or medically
complex child often results in bankruptcy, divorce, depression, loss of
employment, and trauma to siblings. Tragically, in some cases, failies are left
with no other option but to sign away their parental rights so their children
can get the care they critically need. By reducing their cost of care, HB199
would provide enough assistance to help families keep their disabled children
at home.
May, co-founder of Hope 4 Children With Epilepsy stated, “Many families in our
group fall into this gap where there is no help and no hope. Only one parent
can work, and even with insurance the medical bills pile up. There are
necessary treatments and supplies not covered by insurance, and  no funds left to pay for caregiver help. The
financial stress, combined with the exhaustion of caring for a disabled child,
cause families to crumble and become desperate. We need to make these children
and families a priority. This bill will do that.”
Founded in 1973, the Epilepsy Association
of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for
all individuals living with epilepsy and seizure disorders. One in 26 people
will develop epilepsy at some time in their lives, leading to over 100,000
people with epilepsy in Utah alone. Epilepsy is the fourth most common
neurological disorder in the US, after migraine, stroke, and Alzheimer’s
disease. The Epilepsy Association of Utah offers a public education program,
statewide support groups, personal and professional advocacy, college
scholarships, medical and transportation assistance programs, educational
conferences, summer camp and more.
We are parents of children with severe
forms of epilepsy. The seizures take a toll on our children’s overall health,
ability to function, and quality of life, leaving them with increased risk for
sudden death. We desperately need new
treatment options. We lobby to make high-CBD/low-THC cannabis extract available
in Utah, and across the United States, to those who suffer with intractable
epilepsy. The extract is not smoked and does not cause a “high”, but it can
save the lives of children.
Press Contact: Candi Huff, Epilepsy Association of Utah
Phone:                    801-557-0326
Email:                      candi@epilepsyut.org
Website:               www.epilepsyut.org
Contact:  Jennifer Hardy-May, Hope 4
Children With Epilepsy
Phone:                    801-400-0046
Email:                      lovingthemayhem@gmail.com
Website:               www.hope4childrenwithepilepsy.com