DIA (Drug Information Association) Patient Fellow, Kayte Thomas, shares Avery’s Angels update.
Published in the October 2014 issue of Global Forum
Kayte Thomas serves as Medical Liaison and Director of Patient Advocacy for Avery’s Angels Gastroschisis Foundation. She attended the first DIA Rare Disease Meeting in 2011, and participated as a Patient Fellow in our DIA 2012 Annual Meeting in Philadelphia. Since 2012, Kayte has simultaneously served as a medical grant reviewer and reviewer mentor for the Patient Centered Outcomes Research Institute (PCORI), and on a Parent Advisory Group (PAG) with the National Birth Defects Prevention Network (NBDPN) and Centers for Disease Control (CDC).
This past July, Avery’s Angels remodeled their website to include, among other enhancements, an extensive list of FAQs that Kayte wrote especially for parents of gastroschisis children – parents just like her. “This relaunching of the Avery’s Angels website was a huge collaboration between multiple people. There were so many gastroschisis parents involved in the entire process,” she explains. Kayte describes these and other steps in the journey of Avery’s Angels, and in her own journey as a gastroschisis mother and patient advocate, in the following Q&A.
How did you become a PCORI mentor and what does a PCORI medical grant reviewer mentor do?
I was selected as a PCORI reviewer at the end of 2012. My first review was so exciting because it was more than gastroschisis and it put my hand in policy a little bit because we helped determine what research is funded. Since my first review cycle, my primary capacity with PCORI has been as mentor. Each mentor works with a pool of between six to ten reviewers. Mentors guide reviewers through the process as they review grants and provide support when there are questions in order to maximize their voice in review sessions. Then, we go to the in-person review and assist with activities such as role playing scenarios to practice the session experience because it can be a little overwhelming to discuss an application when there are thirty people in a room and half of them are scientists.
What does the NBDPN Parent Advisory Group do?
The Parent Advisory Group was formed with five parents and six clinicians from the CDC, the March of Dimes and various birth defect tracking agencies or health departments. It was spearheaded by Dr. Marcia Feldkamp, one of the country’s primary gastroschisis researchers and a clinician based at the University of Utah, with Cara Mai from the CDC and Melanie Lockhart from the March of Dimes, all of whom wanted parent input on policy because parents are the ones dealing with birth defects.
Our goal for that first year was to raise awareness about birth defects and we managed to accomplish a lot: We assisted the CDC with their “January is Birth Defects Awareness Month” informational packets. We also created and filmed a public service announcement video in English and in Spanish, in 30-, 60- and 90-second increments. This video was distributed nationally and internationally; at last count, it’s been seen in more than twenty countries. The message was that “birth defects affect us all”: Every four and one-half minutes a child is born with a birth defect and one in thirty three people have a birth defect – statistics the average person doesn’t know. It aired on YouTube, a couple of TV stations and one enterprising person got it played as part of the “coming attraction previews” in a movie theater! Four of us also co-authored a paper on caring for a child with a birth defect that was published in The International Journal of Environmental Research and Public Health. And at the National Birth Defects Prevention Network’s Annual Meeting in 2013, they presented our group with an award.
Raising awareness was step number one. Now, we are creating an entirely different entity called the National Birth Defects Action Coalition. We’re trying to get even more parents involved as regional leaders; we need parent advocates to commit to creating a national discussion about these issues.
Let’s turn to some topics from the new Avery’s Angels website. This sounds like the beginning of a great story: “The two chose the gastroschisis ribbon color in their living rooms from a box of crayons one night, which still remains one of their favorite stories of their journey together.”
This is my favorite story because it was when Meghan Hall (Avery’s Angels CEO and Founder) and I first got really excited about impacting the gastroschisis world. We had chosen the first awareness day and needed a color to go with it. Meghan is a teacher assistant at the time and my kids were pre-school aged so we both had crayons; we pulled them out and began to think about what color would be meaningful. We pulled out lavender – no, that’s kind of “little old lady.” Pink and blue? No, that’s the colors of the prematurity ribbon. So we pulled out this green. The color is actually Crayola inchworm green; everybody calls it lime green but the official crayon name is inchworm green. We looked at it and said, “Yes! This is the color! It’s hopeful!”
Then we realized this: In the NICU (neonatal intensive care unit), a tube is placed down the mouth into the stomach of gastroschisis babies to suck all the bile out of their stomach. These children can’t eat until their intestines are working, and we know this is starting when this fluid being sucked out changes from a really dark green to a lighter green. The green that we picked is essentially the color that you wait to see before your child can eat! We didn’t even realize it at the time but later knew that it was the perfect gastroschisis color!
Why was the timing of the publication of these FAQs so important to you?
My daughter Ashley was born with gastroschisis in 2005. At that time there was no gastroschisis support, no Avery’s Angels, no gastroschisis ribbons, not even one website you could turn to for facts, and of course I had all these questions. The first thing that most parents who get this diagnosis do is go to the internet and google it; when you google it and nothing pops up, that’s scary. That FAQ page was published on July 2, 2014. We wanted it published in July because July is Gastroschisis Awareness Month. I went back through the sonograms I had – you go through so many medical appointments that I kept a photo album! – and on July 2, 2005, I was in the hospital on bedrest for low fluid. Through this experience with my daughter, I swore that if I could ever help another parent, I would support them because I didn’t have that. I wanted to put information out there for parents. Amazingly, nine years to that very day was the publication date. It’s a legacy for my daughter.
How did you decide that these were the right number (22) and topics for the FAQs?
In the past near decade that we’ve been doing outreach, these are the most common questions, the basics that everyone wants to know. Why does this happen to my child? What’s going to happen when we go home? The mental health aspect is a really big deal: It’s just now starting to come out – not only with gastroschisis but with a lot of birth defects and other adverse outcomes – that parents can suffer from PTSD (post-traumatic stress disorder), which is usually associated with military veterans. The progression through topics was intentional and I made sure that all of the annotations were linked back to the original source so that the reader could read them on their own.
Would you further expand on “Rates of gastroschisis are increasing worldwide and this trend is being called a ‘pandemic’ by many researchers”?
I first heard that word at the gastroschisis conference in Spain in 2010, where more than ninety doctors representing nearly twenty countries all said that this was a global problem. I began to learn that this is happening everywhere; the only difference is that in developing countries, and even in some more industrialized countries, all of these children die. Every single one of them. So we don’t have the numbers on it. Our children are lucky because we have access to medical care and resources, so 80 to 90% of them survive. But there are still some places with a 100% mortality rate. The big thing we’re missing is that research piece – nobody knows why rates are increasing or what causes gastroschisis in the first place. They’ve come up with some correlations: If you have this, this and this factor, you’re at greater risk for having a child with gastroschisis. But nobody can tell you, “This is what causes gastroschisis.” Nobody has answered that.
There’s that gap – the actual cause gap – and then there’s the quality of life throughout the patient lifespan gap: We don’t know what happens to kids who are having surgery now because thirty years ago most of them died. We do have some survivors in their thirties, forties and fifties, but they’re few and far between and their complications are often related to not receiving the type of care that we have now. Also, there haven’t been many studies on long-term prognosis. But the one thing that we know is that the prevalence is just huge. When my daughter was born less than ten years ago, it was one in 10,000 births. Now, it’s one in 2,229 and climbing. There are some places in where it’s one in 800 births.
Because it’s still classified as a rare disease/birth defect that people don’t know much about, it’s not on the radar for research. It so obviously needs to be, particularly because the greatest risk factor is being a young mother, so teenagers and young women in their early 20’s are the mothers most likely to have these kids and we don’t know why – and that impacts everything from education to employment to healthcare in this demographic.
If you could change one thing about clinical research, what would you change?
I would raise the level of public awareness about the importance of clinical trials. That’s where the national budget is cut every year, funding to the CDC and the NIH and others who are finding the answers to our questions. People have no idea that they’re cutting funding to these things until their child is born with something and then they wonder why there isn’t more research. I would want the public to be given more knowledge and be empowered to say “research and prevention matters.” Conversely, I would want researchers in the US to do what researchers have done in Spain: “We’re never going to have all the money to do this trial, so let’s just do it anyway.” I know there are a lot of laws tied up with this approach but I would like to see the research just get done. Somehow.
Since I attended that first DIA Rare Disease Meeting in 2011, there has been a definite trend toward patient and advocate participation, much more than before. I would like to see more clinicians turn to patient support groups and ask us what needs to be studied. Ask us for more input. Ask us for more help. Reach out to us. Involve us. So many of us are willing and waiting for the opportunity, but sometimes parents and advocates don’t know where or how to reach out. So please reach out to us.
Meghan and I also envision a medical component to our website, where clinicians and physicians can share their own information and research so that a gastroschisis doctor working in a rural town can log in and access the latest information from a medical center in Boston or someplace like that. I communicate with a doctor in Nigeria and 100% of his gastroschisis patients die because they don’t have access to recent information on best practices. We want to provide doctors around the world with some type of forum where they can learn from each other so we can raise global health everywhere, not just in places with modern technology and access to care. So if anybody’s interested in hopping on the clinician-physician portal bandwagon to share ideas and practices, please contact me at Kayte@averysangels.org.