NEA and PeDRA to team up on new research project with $250,000 grant money designated for future work.
Published On: Dec 2, 2021
Last Updated On: Jan 12, 2022
Sam Bittner knows eczema. The 22-year-old college student has lived with severe and often debilitating atopic dermatitis (AD) since she was an infant, and this firsthand experience motivated her to sign on as a NEA Ambassador to help improve the lives of others living with eczema.
On July 23, 2021, Sam served the critical role as the sole patient voice in a public meeting held by the Institute for Clinical and Economic Review (ICER), a final step in the evaluation of the clinical effectiveness and value of new and pending treatments for AD, including JAK Inhibitors and a new biologic. A nonprofit research organization, ICER engages drug manufacturers, patient advocates and healthcare providers to develop recommendations on drug pricing and coverage. ICER’s evaluation has no impact on FDA approval.
NEA was invited to participate in the ICER review as a key stakeholder throughout the process, and facilitated Sam’s role in the July meeting to share her personal, lifelong experience with AD. From the start, Sam’s message was clear: “Every part of my life is affected by this disease,” she said, “All I know is that I want to feel better.”
With the support of NEA, people who live with eczema are playing a more visible role in the development of new treatments and in the decisions that affect their healthcare. “I was incredibly nervous at first,” Sam said. “But as I started telling my story, I noticed how every single person was paying close attention. I felt like my voice, and other patient voices, were finally being heard.”
Due to the heterogeneous nature of eczema, the day-to-day lived experience can vary greatly across the patient population; a treatment that might help one person’s AD may be ineffective for someone else’s symptoms — and possible side effects, according to Sam, can make a patient feel like “they’re constantly picking the lesser of two evils” in choosing a treatment. “An ideal treatment would relieve my inflammation and itch without compromising any other parts of my health,” she said.
Conveying the potential impact these new treatments could have on patients’ lives, Sam described the negative impact of eczema on her relationships, education, sleep, mental health and career plans. “Most days I feel more like a patient than a person,” she said. “I can’t even grocery shop without having an escape plan in case my eyelids start to crack and bleed.“
For many patients and caregivers, the challenges of eczema are compounded by having few long-term treatment options. The possible future approval of new treatments may provide patients with additional choices, but only if they are accessible in terms of cost and coverage.
“I am hoping that there will be more treatment options that everyone has access to,” said Sam.
It’s critical that patients and caregivers be included in conversations about their care. If you’d like to claim your seat at the table and be notified of future opportunities, become a NEA Ambassador!