The More Than Skin Deep Eczema Patient-Focused Drug Development Meeting pierced through all three layers of skin, cut corners and directly targeted the heart. The energy in the room was electrifying with gut-wrenching, raw, and unfiltered narratives of what life with eczema is truly like. Although this was technically a meeting, it felt more like a calling. Similar to a phoenix rising from the ashes, except in this case you can substitute the ashes for dead skin cells. This was a moment that I’ll always cherish for the rest of my life.
On September 23, 2019, I attended the More Than Skin Deep The Eczema Patient-Focused Drug Development Meeting, at the College Park Marriott Hotel & Conference Center in Hyattsville, Maryland. It was officially the first day of Fall, but the leaves didn’t hold a candle to the flowing tears that fell gently onto the soft tissues placed strategically on the tables. I kept thinking to myself if there’s one sponsor that was missing from this event it was Kleenex! Maybe next time.
Before I dive into the meeting I have to say this was so beautiful to witness in person. I truly hope anyone that deals with eczema in some way, shape, or form can attend a meeting such as this one. Regardless if you’re an advocate or not. I promise you will have the time of your life. This community is a force of pure unity coming together to uplift and support one another. Not only were patients in attendance but spouses, partners, children, and other loved ones. There were no egos, no “know it alls,” no one-upping each other to see who received the best treatment, etc.. Friendships larger than our swollen lymph nodes were formed. A much-needed resuscitation swooped into the room and reinvigorated us as we sat in our truth. It was life-long trauma combining forces to champion a solution for the common good.
Throughout this meeting you learn that families have been put through the wringer, self-esteem shattered, people contemplated suicidal thoughts, phobias around intimacy formed, savings were depleted, bullies prevailed, dreams were crushed, college attendance was delayed, large gaps of school was missed, avoidance from the outside world became normal, constant stares from strangers become unbearable, some morphed into a shell of one’s former self, where side effects became full effects as they caused more damage than eczema itself, and so much more!
We’ve been through it all, and this is the reason why these advocates attended this meeting. We’re itching for a cure. The passion is unmatched and we’re determined and hungry to get a handle on this awful debilitating disease. We see the world through a different lens where we’re more compassionate and sympathetic to other people’s adversity. We simply want our lives back and are willing to do whatever it takes to get there for us and future generations so that no one is EVER limited in their options for treatment. My only hope is that this expands to other countries as we are incredibly blessed to hold such an event in America.
With that said a HUGE thank you to the corporate sponsors: Platinum, Sanofi Genzyme, Regeneron, Leo, Pfizer, Gold, Abbvie, Boehringer Ingelheim, Dermira, Lilly, Bronze, Incyte, Novartis, National Eczema Association, Allergy & Asthma Network, ITSAN, Global Parents for Eczema Research, Asthma and Allergy Foundation of America, and the incredible organizers panelists, patients, the moderator James Valentine, corporate representatives in attendance and last but not least eczema, because we wouldn’t be there without it!
Created in 2013, the Food Drug Administration (FDA) started a series called the “Patient-Focused Drug Development” (PFDD) initiative. Their mission was to gain valuable information from patients, caregivers, advocates, and community leaders on what life was like with a serious condition. Furthermore, the FDA wanted to make sure the treatment patients receive are on par and align with their ailments. Also, the FDA wants to understand the side effects of the drugs and how much patients are willing to tolerate. After all, they are the ones that approve of these drugs, depending on how successful the results of the clinical trials are after phase III.
*Fun fact, the drug development process takes a long time. A very long time, like waiting for the next season of your favorite show (cough Billions cough) long time. Just kidding, it’s even longer. We’re talking 10-17 years before it’s properly tested, approved, and on the market. Only 10% of candidates make it and you’re going to need to money sprinkled in with a bit of patience for research and development.
The event consisted of five different organizations: the National Eczema Association, Allergy & Asthma Network, ITSAN, Global Parents For Eczema Research, and Asthma and Allergy Foundation of America. Surprise, when you have eczema…it’s appears to be the gateway skin disease for other ailments, such as asthma, allergies, and so much more. Additionally, there were doctors, researchers, and a few other key industry leaders in attendance.
We started with opening remarks led by the wonderfully enthusiastic Julie Block, the CEO of the National Eczema Association. Julie asked, “how did we get here?” She then proceeded to explain how we got there and closed her statements with her infamous quote, “This is our time!”
Next up, we had Korey Capozza, the founder of the Global Parents for Eczema. After telling her story of what life was like raising a three-year-old with eczema. Then, She had everyone turn to their neighbor, introduce themselves. There was one word that she honed in on, unity. Let me tell you, that room was so united we could have called ourselves the United Patients of Eczema and formed our own country! She wrapped up by enlightening us on the 4 reasons why holding a meeting of this magnitude involving eczema was crucial.
Following that speaker, we had Dr. Jill Lindstrom. She holds the title of Deputy Director, Division of Dermatology and Dental Drug Products, and Food and Drug Administration. I thought she did an outstanding job informing the audience of the drug development process. Idea —> Identified —> Evaluated —> Clinical Trials —> Analyze It —> Market & Sell. She also mentioned that the FDA accounts for about 20 cents of every dollar spent by consumers, and their mission is to promote and protect public health.
When drugs are in the Clinical Trials stage, they go through different phases.
- Phase I – 1st administer the drug to see what it does
- Phase II – If the drug is not deemed toxic, administer it out to see what the effects are
- Phase III – If Phase II goes well, this is where it gets confirmed further to make sure it will be successful on the market. After all, this is a very expensive process.
Continuing, we had speaker Dr. Jonathan Silverberg, an Associate Professor at the Feinberg School of Medicine, Northwestern University. Dr. Silverberg did a tremendous job thoroughly explaining exactly what eczema was, a chronic itch that involves eczematous lesions. There were lots of hidden gems within his speech that opened my eyes.
- There’s no diagnostic test for eczema. Which I assume means doctors only go by symptoms, and examining the skin for themselves.
- Eczema isn’t mainly in small infants and children. *Onset eczema (developing eczema after childhood) is becoming increasingly popular.
- Flexural Involvement – different around the world
- Eczema ranges in broad spectrums…every single diagnosis is different
- People of color are grossly underrepresented in studies when it comes to eczema – making it harder for doctors to diagnose as they can’t distinguish the pigmented rashes.
- Unfortunately, doctors were wrong about all babies “growing out of eczema,” as a good portion carry eczema into adulthood.
- It’s unclear why eczema disappears for years, only to come back worse for some people
- Costs of AD is north of $5.297 Billion in the US (2015) this including emergency care, and hospitalizations
- $16.19 million loss in work wages, as patients had to go on disability and/or cease work altogether.
Succeeding this speaker, we were briefly introduced to Kelly Barta the President and CEO of the International Topical Steroid Awareness Network (ITSAN). Followed by our moderator James Valentine who received his MHS in health policy from Hopkins & his JD from Maryland Law. After introducing himself, we pulled our cell phones out to participate in a live interactive polling process. Three questions graced the screens and we were able to see responses from the audience flood in. It’s was a great experience, and cool to see where everyone stood when it came to eczema.
1st Panel – Symptoms and Daily Impacts That Matter Most to Patients.
Panelists: Joseph Cutaran, Brianna Cox, Sarah Pry, Kelly Barta, Raelle Brown, Keri Kelley
Joseph Cutaran – 4-year-old son was born with atopic dermatitis
“I remember taking turns with my wife lying awake at night holding Drew’s arms down so he wouldn’t scratch and peel the skin off his face and throwing away his blood-stained closed because we just didn’t want to wash them”
“I was even told by one of the professionals we went to that my son’s skin was because I’m Filipino and Filipino’s have the worse skin in the world”
“This disease strained my marriage. In fact, my wife and I are just now learning how to be a couple again. Because the past few years we’ve been tag team caregivers, let alone trying to be friends”
Brianna Cox – A fourteen-year-old eczema patient
“Most people couldn’t handle the burden of it. I’d be forced to go home early. I felt rejected”
“My dry, flaky, split, oozing skin would make kids in elementary school not want to hold my hand or touch me in fear of catching what I had”
“I spent time in the hospital with staph MRSA covered head to toe with hot raised lesions that hurt at the slightest touch. It made me not want to live anymore. I prayed for God to take me. I hurt, I itched, I bled for so long that I became numb.”
Sarah Pry – 11-year-old son Aiden was diagnosed with eczema at six months
“At two years old he had no eyebrows from scratching his face so hard”
“From 2014 to 2018, he’s missed enough school in time to equal up to a full school year, and had to be homebound multiple times.”
“His burden and mental scars are much deeper than the ones on his skin”
Raelle Brown – Life long eczema patient
“It came to a point that I lost at least 15 pounds, leaving me barely 100 pounds. It wasn’t really a visual difference between me and a cancer patient.”
“I spend hours researching for help that my doctors could not give me”
“Having my own ambitions throughout my entire life, I fulfilled a dream of having my own business at the age of 23. But now at 27 years old I have no – I have to question everything that I’ve worked towards in order to catch up again”
Kelly Barta – Lifelong eczema patient, President of ITSAN
“And I would just cry and cry, night after night just cry and cry. Memories would be coming up about, you know the stigma around this and the aversion I’ve sensed from people where I’d walk into a room and no one would even acknowledge I was there.”
“And then there was one of the topics I did not want to talk about, but someone needs to talk about and that’s physical intimacy in our relationships”
“I had to lie naked on towels because my skin was oozing so severely. I couldn’t even turn to my side because my skin burned so badly.”
“But then I was exposed to eczema herpeticum, which is a skin virus and within several days, I was in the hospital completely immobilized because the immunity in my skin had been shot and it couldn’t fight that virus. I almost died”
Keri Kelley – Mother of three, 1st born diagnosed with eczema at 6-week appointment
“We spent our babymoon living in a Ronald McDonald house doing skin pretests, blood draws, food challenges, and learning the messy art of wet wrapping”
“It means calling the pediatrician at 3 am begging for a sedative, just to let him get a little bit of sleep”
“And when my husband and I would catch a few moments of downtime we would just spend it sobbing together. He told me that he would dread coming home from the office because he knew the real work was about to begin.”
Continuing on, the moderator then asked participants in the audience to stand up, share their stories, while answering three questions that were asked. It’s then that you realized we’re all in the same boat. We’ve beat ourselves up, worse than any skin condition could do. We’ve blamed ourselves, you’ve blamed eczema. We’ve held back on becoming the people we were meant to be because our bodies wouldn’t allow up to live up to our full potential. It was moving to say the least. It was a force and a wealth of knowledge. I’m sure every nerve ending was hit, as there were more tears and goosebumps than ever before.
Tonya Winders the President & CEO, Allergy & Asthma Network (AAN) graced the stage by closing out the morning session. She thanked the FDA’s commitment to patients and reminded the room of how lucky we are to be given this platform, as other countries throughout the world do not have this opportunity. As the mother of five teens, her sixteen-year-old daughter lives with moderate atopic dermatitis. Some of the statements her daughter made were, “Why am I not the pretty sister?” “Will anyone ever love me?” She then goes on to thank all the panelists for being so brave and talks about what was next on the agenda. The biggest take away was her advocating for partnerships throughout the community. The patients, patient community, FDA, and industry can come together to advance the science and meet the unmet needs for millions around the world.
Session 2: Current and Future Approaches to Treatments
Panel/Caregiver Panel: Ashley Ellis, Angela Fox, Heather Sullivan, Kathryn Tullos, Lynell Doyle
Ashley Ellis – Mother, Pharmacist, 8-year-old daughter was diagnosed with severe eczema, additionally, her third-grade teacher also has severe eczema and they were watching the panel live.
“I took all that in to see Dr. Tangersly, and I told him said I don’t mean to discount others experiences, but I feel like I have a special needs child. My whole daily life and our entire family of five, we revolved our lives around making sure that Hadley’s skin was ok.”
“At the time her meds were, hydroxyzine for itching four times a day, moisturizing twice a day, hydrocortisone, Protopic, and Eurcisa twice a day but all applied three hours apart”
“One of the things she really struggled with was handwriting, and actually holding a pencil.”
Angela Fox – Son Cooper diagnosed with eczema at 10 months of age.
“His infection was so prevalent you could literally smell it on him”
“And the never-ending search for normalcy is mentally and physically exhausting for everyone”
“I ask why are we as parents forced to weight the risks that we may harm our child’s eyesight, stunt their growth, or possibly inhibit their ability to have children someday against their immediate need from their relieve from the painful itching and their weeping wounds”
Heather Sullivan – Daughter Hazel and son Sawyer were diagnosed with severe eczema
“The faces of eczema are so diverse and non-linear the treatment is inevitably hindered”
“Headaches, stomach upset, diarrhea, and vomiting were common side effects to many of his medications. And this added to that list significantly. Still, I defend our decision to increase our babies risk of infections, blood clots, kidney disease, and cancer so that we could introduce him to childhood”
“In 2018 we wheeled Sawyer through airports to meet Dr. Richard Aron from South Africa. Dr. Aron was willing to look at Sawyers previous prescriptions and tailor them to address the needs to his specific constitution.”
“This compound, widely known as the Aron Compound or AR operates on the research that bacterial infection staphylococcus aureus drives inflammation. So if that can be controlled by an antibiotic, the steroids will be able to work as designed”
Kathryn Tullos – Registered Nurse who’s representing her 10-year-old son who was diagnosed at 6 months old.
“Over the next few months, his problems intensified. All of his lymph nodes blew up, like golf ball size lymph nodes in his groin”
“His heart developed a new murmur and thickened heart wall. And he dropped from 75% percentile in height to 15%”
“Three of his specialist laid the problem at the feet of steroid overuse. However, his dermatologist still insisted on treating with steroids, thinking I was just steroid phobic. I decided to follow his other specialist recommendations and my own gut and discontinue topical steroids”
Lynell Doyle – Mother of a 13-year-old son with severe eczema
“He lost his eyebrows, got severe facial dryness and peeling as well as developing red bulging and itchy eyes.”
“The very last shot he took was the worse. Due to a malfunction, the needle twisted and broke off in his abdomen sending him into excruciating pain and unparallel panic”
“In my exhausted view, an ideal treatment for eczema would be easy to acquire, easy to use, and effectively due no harm to the individual using it instead of creating a lifelong dependence on drugs that don’t work. It would teach bodies with eczema to win the fight against their skin without having to give up other parts of their lives due to side effects”
Adult Panel – Lisa Choy, Tyler Berryman, Pamela Friedman, Lindsay Swire Jones, Steve Gawron
Lisa Choy – was diagnosed with eczema at age 6 or 7
“Maintaining this mild state is incredibly exhausting and time-consuming”
“And my vigilance leads towards paranoia. For example, coming here, to this meeting or traveling anywhere I think about – I know you guys do this too. I think about the bedsheets and the towels at the hotel and the AirBNB and wonder are they going to be 100% cotton? Have they been laundered with fragrant free, dye-free detergents?”
“As for treatment, I look for efficacy. But I also want minimal side effects. Trading a known evil with an unknown one gives me pause.”
Tyler Berryman – 25-year-old diagnosed with atopic dermatitis as an infant
“Like anyone else with eczema moderate to severe can tell you, there are good days and there are bad days”
“So I’d say the most annoying thing about current treatments is that it takes so much time”
“If I was to envision what the ideal treatment would look like. The ideal treatment is nothing obviously. No pills to take. No creams to apply. No injections to stick yourself with. Nothing. But at the end of the day, I have to be realistic. The closest thing that I could think of to what a truly ideal treatment would probably be is just a small pill that you can take. Let’s say every week”
Pamela Friedman – diagnosed with eczema as a baby, then developed childhood asthma and allergies
“I was compliant and I kept getting worse”
“In other words I was too sick for the non-steroidal treatments.”
“To manage all of this I had a primary care physician, dermatologists – more than 12 over the years if you count academic medical centers, an ophthalmologist, an allergist, an endocrinologist, an infectious disease specialist, and eventually a pain management specialist”
Lindsay Swire Jones – born with eczema, diagnosed at age 3 with allergies and asthma
“My body had gone into some sort of steroid dependency mode it was no longer reacting positively to prior dosing”
“I remember thinking it’s 25 years later, nothings changed. I’m still the insecure little girl all alone helplessly battling her skin”
“The majority of my life I’ve been encouraged to take over the counter allergy medication for itch and now studies are showing that these types of drugs can cause memory loss or even dementia. I have noticed an issue with my short term memory already and I feel it’s the start of something that will get worse as I age”
Steve Gawron – a 50-year-old lifelong sufferer of atopic dermatitis
“I was continuously told that I would grow out of it or a cure was just around the corner, always providing some false sense of hope. As I sit here before you today, I can say I’m still waiting for that day to come”
“When I was still young, my parents took me all the way to Boston to see some world-renowned dermatologist. Only for him to turn around after 30 seconds of examining me to stand before me and tell me, there’s nothing he could do for me and that I picked the wrong parents.”
“I continued to miss school and I was bullied so bad that I refused to continue on with further education”
“In my 30s I had not seen my father in over 10 years. Upon learning of his impending passing I visited him one last time in the hospital. With his eyes closed, he asked me ‘if he had any grandchildren?’ And I had to tell him ‘no.’ I watched the tears roll down his face when he asked me ‘was it because of my skin?’ And I said yes!”
This was followed by questions that the audience and online webcast participates volunteered to answer.
Closing remarks – Kenneth Mendez CEO of Asthma and Allergy Foundation of America (AAFA)
Two of Kenneth’s children and he suffer from eczema. Kenneth discusses Filipino culture and how everyone gave you a nickname. His was corky and his family remembers him always scratching. He mentions that we need to be talking about eczema more in public. Besides, he’s worried about the next generation of kids as the condition is officially in the family. Another fantastic point he made was how helpful it would have been for insurance companies to attend this meeting. This is the start and we’re ready to move the ball forward.
Eczema is more than just skin deep, it also includes the mind, body, and soul. For us to heal these three things need to also be aligned and well taken care of. This is just the beginning and I can’t wait to see what the future has in store!
- Eczema is expensive…hence why we need more funding
- Patients want a customized eczema treatment – not a ONE SIZE TREATS ALL
- Additionally, the chronic ITCHING is by far the worse part of eczema
- The eczema community is THRIVING and everyone is asking what’s next? How can we continue the conversation and destigmatize this disease?
- Isolation is one of the major components when dealing with eczema
- Eczema holds you back in imaginable and unimaginable ways
- Some parents have to deal with intolerant school boards, who dismiss the severity of eczema when children miss too much school
- Those without eczema, specifically children don’t understand eczema and therefore fear it
- Eczema is hard to diagnose and DOES NOT discriminate
- Patch testing is common, but identifying and eliminating triggers doesn’t mean eczema will go away
- The National Eczema Association “2019 Eczema Expo” WAS THE EVENT OF THE YEAR (before this one), and everyone stated how life-changing it was
- Dr. Aron seems to be the “Peoples Champ” and has truly changed the game!
- MRSA (Staph) is a huge fear amongst the community, as it could land you in the ER
- Topical Steroid Withdrawal is being heavily praised but is hell on earth to go through
- Dupixent (dupilumab) has been a miracle worker for some, others mentioned they’ve had bad reactions
- Huge lack of representation in people of color
- Bioderma is a patient favorite
- Previous treatments for eczema can be compared to as torturous
- Suggestions of a pill for adults and a chewable for children to take as medicine. Patients are jaded from creams, ointments, and injections Due to pills being easy to take and able to carry it anywhere
- Mental and physical health is just as important as taking care of your skin
- Support is out there, everywhere but you must be willing to seek it
- Atopic March – Eczema, Allergies, Asthma is common
- Eczema will take complete control of your life if you let it or can’t properly manage it
- The medicines tend to work…until you stop taking them or your skin becomes immune. This causes intense flare-ups which lead to desperation for the quickest treatment or abandoning treatment altogether
- Microbiome treatments are the future
- The skin-gut connection is something people are researching more about
- Caregivers also experience depression, anxiety, feelings of hopelessness, and guilt
- Patients gave up animals such as their dog and cat due to severe pet allergies
- Men tend to hold back when it comes to eczema
- The divorce rate is very higher among people who have eczema and/or chronic conditions
- It takes people YEARS to accept how they look due to eczema
- Many jobs have been lost due to flare-ups
- People feel like addicts when it comes to drugs they are given
- A recommendation for doctors to personalize and check in on patients, instead of handing them a prescription and sending them off
- Overall patients more options for eczema treatments that are affordable and tackle the underlying condition
- Ultimately we want A CURE!