The dangerous delay in treating epilepsy patients

November 02, 2015

Imagine a mother, sitting in her living room, frantically calling a pharmacy, wondering why her son’s epilepsy medication hasn’t arrived. She desperately wants to help her son, but has no power over the antiquated health care system. Instead, she must wait … and wait … and hope that in the meantime, her 5-year-old son doesn’t experience a grand mal seizure. The longer she waits for his medication to arrive, the more likely he is to experience a grand mal seizure — and irreversible brain damage.

Meet Alison Barry and her son, Reid.

She’s also mother to ZappRx’s Founder and CEO, Zoë Barry — and she, along with her son Reid — is the reason ZappRx was founded. Alison waited nine full months before her son could see a pediatric neurologist, and then another six months before his specialty medication arrived in the mail. If the process had taken any longer, Reid would have had long-lasting brain damage and a learning disability. As it was, he developed a stutter and struggled to learn to read.

Perhaps worst of all, there was nothing Alison and Zoë could do — until now. Since 2012, Zoë Barry has been building a team to modernize the specialty e-prescribing system. She is uncovering the barriers to care and the bottlenecks that slow down the prescription drug process. As a result, her team has built a best-in-class solution that increases speed to therapy.

The first barrier: it’s difficult to find the right doctor and diagnosis

It took nearly nine months before Reid received an appointment and diagnosis from a pediatric neurologist. He isn’t alone. It can be incredibly difficult for epilepsy patients to get appointments with neurology specialists. And, it can be even harder for patients in rural or low-income areas.1 According to a recent survey, nearly 40% of patients with epilepsy reported seeking help from primary care physicians (PCPs) before consulting specialists. Then, the majority of PCPs referred half of their patients directly to specialists anyway. 2

The second barrier: treatment requires extra steps

Specialty drugs for epilepsy are rare and very expensive. As a result, payers require additional paperwork and tests before they approve drugs for dispensing. This is a manual and labor-intensive process for physicians — in fact, they regularly spend approximately 20 hours per week completing paperwork for these drugs. In the meantime, epilepsy patients wait and are at risk for additional seizures resulting in brain damage.

Removing the barriers

First, we believe better communication among health care professionals and patients can help. Most patients don’t know when they should seek treatment from a PCP versus a specialist. In addition, our physicians and nurses must look for epilepsy symptoms, namely seizures of any kind, and prioritize appointments for these patients.

At ZappRx, it’s no surprise we also believe in the power of technology. We have an opportunity to improve communication among health care professionals, payers and patients, and bring the prescription wait time from weeks down to just days. 3,4 There’s no reason why epilepsy patients — or patients with other complex health conditions — should wait months for treatments, especially when their quality of life and outcome depends on speed to therapy.

Learn about ZappRx technology for health care professionals and patients.

 
1 Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies, ed.
2 "Epilepsy." The Epilepsy Foundation, 2015. Accessed 10 Aug. 2015. (http://www.epilepsy.com).
3 Based on anti-TNF therapies, “Internal ZappRx Company Report,” (2015).
4 Survey conducted by Deerfield, “Internal ZappRx Company Report,” (2015).