Tips to help you prepare for your next trip on the open road if you live with eczema: planning ahead makes all the difference.
Published On: Jul 17, 2017
Last Updated On: Jul 15, 2021
As our nation struggles with escalating drug costs, independent medical research nonprofits that assess the value of prescription drugs – also known as value framework groups – have been headlining the national news.
Their duty is to perform an independent review of treatments available to a particular disease community. This is to determine if the drugs are priced appropriately based on their safety, effectiveness and ability to improve a patient’s quality of life.
A value framework group called the Institute for Clinical and Economic Review (ICER) reviewed two new treatments for the eczema community: Dupixent (dupilumab), the first biologic FDA approved for people with moderate to severe atopic dermatitis (AD), and a topical PDE4 inhibitor for AD called Eucrisa (crisaborole).
ICER’s goal was to determine if these two medications are priced at a value that is worthwhile to people living with AD. As part of its research, the group reached out to the National Eczema Association (NEA) to obtain feedback from members of the eczema community.
“ICER contacted us early on to learn more about the patient experience and perceptions of value,” said Tim Smith, Vice President of Advocacy and Access for NEA. “We were pleased to see that our contributions, and those of the patients dealing with this disease, were appropriately reflected throughout the report.”
On May 25, ICER’s regional community forum, the Midwest Comparative Effectiveness Public Advisory Council (CEPAC), held a public meeting in Chicago, which gave doctors and patients an opportunity to offer insight on their experiences prescribing or taking dupilumab with members of ICER and other stakeholders. During this meeting, the Midwest CEPAC voted that there was insufficient evidence to make a determination on the value of crisaborole at this time.
Sue Lipworth, a former NEA board member and NEA advocate was asked to share her story at the May meeting. This gave her the chance to speak candidly about the challenges of life with AD and what it felt like to experience relief on Dupixent after so many other treatments had failed her.
“Before Dupixent, I had horrible eczema for 20 years. I tried everything. I was not one to give up,” said Lipworth “After beginning the trial, I knew within a week that I got the drug and not the placebo. When I was asked to speak, I felt like I was given an opportunity. Maybe my voice, just one person, could make a difference in helping others get access to this life-changing treatment.”
Debbie Byrnes, an advocate for NEA living with atopic dermatitis in Texas participated in the Dupixent clinical trial and was one of the patients to join a panel on patient experience at the Midwest CEPAC meeting.
“There is still a lot to do to make people understand this disease and how debilitating it is for so many,” Byrnes said. “Every time I go to speak in front of people who don’t have AD, I hear the same comments. People tell me they had no idea how severe this disease can get, or how it affects all aspects of our lives. I participated in the ICER session because I wanted to be a voice for eczema patients.
“AD patients all around the U.S. that are eligible, who were not fortunate to participate in the clinical trial, need access to Dupixent,” she continued. “By sharing just a piece of my story, I hope there will be a greater understanding of not only the need to determine the value of Dupixent, but also the importance of making it accessible to those patients who really need it.”
Caption: Lipworth, Byrnes along with others share their experiences with Dupixent at a May 25 public meeting held by the Midwest CEPAC, a division of ICER.
On June 8, ICER issued its Final Evidence Report concluding that dupilumab offers “high value” for adults with severe AD and “intermediate value” for those with moderate disease. The report noted there was enough evidence to consider dupilumab as “superior” in treating adults with moderate to severe AD in comparison to cyclosporine.
“Our analyses showed that dupilumab offers important clinical benefit for patients with moderate-to-severe atopic dermatitis. Moreover, the drug was priced in a way that aligns well with the benefit it provides to patients,” said Dr. David Rind, Chief Medical Officer for ICER, in a statement.
As the research pipeline fills up with more than 60 new treatments being evaluated for eczema, NEA’s efforts to illustrate the real-life experiences of eczema patients and their need for these treatments to be accessible and affordable has never been more important.
“It’s a new world for eczema,” says Julie Block, President and CEO of NEA. “With advances in treatments, our understanding of the disease and what our community needs, the future has never looked brighter!”
Visit our Advocacy Action Center to find out how you can get involved.