The advantages of virtual advocacy

Eczema Awareness Month is the time when the eczema community must come together to shine a light on the burdens of this disease, fight for access to affordable, effective treatments and lobby for more eczema research funding.

And while COVID-19 has created uncertainty in nearly every aspect of our lives – including moving most activities indoors – it hasn’t stopped us from using the internet to seek new information and resources about this disease or connect with fellow eczema warriors at events like Virtual Expo.

At a time when face-to-face visits are not possible with legislators on Capitol Hill, NEA Advocacy Ambassadors are meeting with policymakers over Zoom, in the comfort of their own homes, thus making it easier than ever to share their experiences and advocate for more research funding and better access to treatments and care.

Personal experience makes an impact

On Sept. 15, NEA Advocacy Ambassadors Amberly Sanden in California attended the 2020 American Academy of Dermatology Association (AADA)’s Virtual Legislative Conference and the Coalition of Skin Diseases Hill Day.

For Sanden, attending her first eczema advocacy event was nothing short of cathartic. “My favorite part was how I felt. I felt very empowered. This is very personal to me because I have had my own eczema journey, but I also have my baby brother (3 months old) who has even more severe flare-ups than mine,” she said.

“As a patient advocate, I felt very supported by the AADA dermatologists because I could tell how passionate they are about helping their patients with eczema and other skin issues,” Sanden continued.

“I also felt like my voice was being heard by the senators’ and representatives’ staff members because they listened to my story and my baby brother’s as well. And it was easy to attend virtually because you can save a lot of money and time by not having to buy a flight or spend multiple days out of town.”

One of the “asks” that Sanden focused on when meeting with legislative staff relates to the Safe Step Act. Step therapy, or fail first, is a health insurance protocol that requires patients to try and fail on one or more medications before approving coverage for the treatment originally prescribed by their physician.

The Safe Step Act helps safeguard patients from potentially harmful step therapy practices.

“This one is very important to me because I personally know how long and painful the process of step therapy can be! I was able to share my own story of my eczema and my little brother’s, which showed the senators’ and representatives’ staff how important is it for them to co-sponsor and support the Safe Step Act,” she said.

Patients + doctors + scientists = team effort

On Sept. 16 and 17, NEA Research Ambassador Amanda Lopez attended the Rally for Medical Research Hill Day online from her home in Texas. The main asks for this virtual event included raising awareness about the importance of eczema research and encouraging legislators to make funding for the National Institutes of Health a national priority.

As this was also Lopez’s first time advocating to legislators, she was diligent about planning ahead.

“It took me days just to prepare my viewing area and workspace. I made sure the lighting was right. I wanted each viewer to see me so that they would remember who I am and what I represent. Also, I had to be considerate of my dress and grooming, adjust the angle of my furniture and made sure there was no clutter on the walls. I wanted the viewer to focus on my message rather than being distracted by my décor,” she said.

Lopez admitted to feeling a bit intimidated at first. “Most members on the call consisted of doctors, scientists, lab researchers and then there was me — Amanda Lopez from Corpus Christie, Texas, who suffers from eczema. I regretted my soft and shaking tone as I uttered my introduction.

“But after that meeting was over, my conviction changed. What was I thinking? I should be proud to represent who I am. After all, I am the reason why these lab researchers, scientists and doctors have a job. My favorite part was discovering that we are all in this together — a collaborative team! In that moment, I knew it started a different kind of fire in me.

“Because of research funding from Congress, I am finally eligible to participate in a clinical study. I say ‘finally’ because most clinical trials for eczema were mostly focused on enrolling children and adolescents or only suited for those with moderate to severe eczema — not to mention the nonexistent clinical sites available in my vicinity,” Lopez said.

‘Step forward and let your voice be heard’

Some of the main takeaways from Sanden and Lopez’s experiences were the importance of speaking up and the need for the eczema community as a whole to fight for their rights as patients.

“As we know, eczema is a very individualized condition that ranges from mild to severe. Each form requires specific levels of management and care. Each warrior has their own unique experience to bring to the table,” Lopez said.

“Our community has been underserved for a very long time. I urge all the other members of the eczema community to step forward and let your voice be heard. We have suffered in silence for far too long.”

“If there are more patient advocates who are able to join, then we can get even more senators and representatives to support the Safe Step Act,” Sanden said. “It can have huge impacts on the quality of life we have. It can be the difference between dealing with a flare-up for months vs. getting treatment much faster.”

Sanden and Lopez are just two of the many NEA Ambassadors who are elevating the voices of those living with atopic dermatitis, highlighting the community’s unique needs and advancing our shared goals. For more information on the program and to sign up, visit NEA Ambassadors.

Photo courtesy of Michael Maceda Jr.