Highlights from the Hill July 16, 2015
Advocate Spotlight: Jim and Victoria Ross Win Fight for Access to Emergency Medication
In 2011, Jim Ross and his wife Victoria were preparing for their son Emmett to begin riding the bus to school. While most families are concerned about their child riding the bus for the first time, Jim and Victoria had an additional worry. Emmett has epilepsy and he could need access to emergency epilepsy medication on the bus. The school couldn’t provide a nurse who could ride on Emmett’s bus and the Ross family started searching for alternatives so Emmett could ride the bus with his peers. This was the beginning of their advocacy journey to allow trained, nonmedical school personnel to administer emergency anti-seizure medications when a nurse is unavailable.
When Jim and Victoria first embarked on this path back in in 2011, they knew very little about the legislative process and how to get a bill introduced and passed. But that didn’t stop them from reaching out to legislators. Jim and Victoria testified before the Public Health Committee in support of allowing training for non-medical school personnel to administer emergency medications to children with epilepsy. Jim’s own legislator, Representative Jonathan Steinberg, first introduced the bill in 2011. Jim also found a partner in Representative Kim Fawcett.
As is often the case, the bill was not successful in its first year, but Jim and his family were determined to keep up the fight. In 2012 they received great news from the school district, which had agreed to have a nurse ride on Emmett’s bus. But although their own personal fight for a nurse on the bus was now over, they had started a movement towards greater access to emergency medication for all children, and they couldn’t give up. Determined to change the law to help all families in Connecticut who have a school-age child living with epilepsy, Jim and Victoria learned more about the legislative process and continued to recruit grassroots volunteers and supporters to help them share their message. Most importantly, they began taking slow but steady steps to work with opponents of their bill. The legislation was again reintroduced in 2013 and 2014, each year the language got stronger and gained more support. Along the way Jim and Victoria educated many people about epilepsy and the challenges of living with seizures, addressing the stigma and misunderstanding often associated with epilepsy. But Jim knew a determined parent and making a few friends wasn’t going to be enough. He pursued a year-long course sponsored by the Council on Developmental Disabilities called Partners in Policymaking which he credits with having taught him how to be an effective advocate navigating the complexities of the legislative process.
Jim’s dedication and newfound political savvy paid off, and he began to conversations with legislative leaders, the Superintendent of Schools, and the Association of School Nurses of Connecticut, who had opposed the legislation in the past. Jim and the nurses worked together to craft a bill that both could support and which would allow trained, nonmedical school personnel to administer emergency anti-seizure medications. With this new partnership, the strength of their grassroots network, and support from the Epilepsy Foundation, Jim and his legislative allies reintroduced the legislation in 2015. The bill again stalled initially, but Jim had won another champion to the cause, and Representative Gail Lavielle was able to keep the bill’s momentum going. An amendment incorporated into House Bill 7023 kept alive the chance that children living with epilepsy and attending school would have better access to emergency medications. With the school nurses, legislative leaders, and education officials on board, the last hurdle was providing the education for all the nurses and school personnel who could be called upon to administer the emergency medication. The Epilepsy Foundation of Connecticut committed to be an education partner, building on the school based training activities they’ve carried out for years.
It turned out 2015 was the year, and HB 7023 cleared the legislature and was signed in to law on June 30. Many people came together over the years to make this possible. But at the heart of it all are two passionate parent advocates determined to improve access to emergency medication for all children in Connecticut. Jim and Victoria, and their children Emmett (9) and Olivia (11), have achieved something remarkable. What started as a fight for a safe bus ride for Emmett now means every child can have a chance to experience the full range of school and related experiences. As Jim remarked, “it started with a little boy…and became a much bigger thing.”
Emmet Ross (age 9) was the inspiration behind legislation to allow trained, nonmedical school personnel to administer emergency epilepsy medication.
21st Century Cures Passes House, Goes on to Senate
On July 10, the 21st Century Cures Act (H.R. 6) passed the House of Representatives by a vote of 344 to 77. H.R. 6 would accelerate the discovery, development, and delivery of lifesaving medical treatments by bringing the nation’s health care innovation infrastructure into the 21st Century. The bill would strengthen the patient voice in the regulatory environment, increase funding for the National Institutes of Health and Food and Drug Administration, modernize clinical trials; remove barriers to greater research coordination; and create incentives for developing therapies for rare conditions. H.R. 6 would also require the Centers for Disease Control and Prevention to set up a surveillance system for neurological diseases that could include epilepsy.
We applaud all of the members who supported the 21st Century Cures Act and encourage the Senate to move quickly on this important legislation to help those living with epilepsy and other chronic conditions. Learn more at epilepsy.com/21stCenturyCures