EAU & H4CE Announce
Support of HB94 “Right to Try” & HB199 “Pilot Program for
Assistance for Children With Disabilities & Complex Medical Conditions”
SALT LAKE CITY, Utah – Monday, February 9, 2015
The 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.”
Rep. 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.
Cristina 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 treatment.”
With 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.
Families 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.
Jennifer 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.”
ABOUT THE EPILEPSY ASSOCIATION OF UTAH
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.
ABOUT HOPE 4 CHILDREN WITH EPILEPSY
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
Press Contact: Jennifer Hardy-May, Hope 4 Children With Epilepsy