REBECCA’S WISH PROVIDES GENETIC TESTING FREE FOR CHILDREN WITH PEDIATRIC PANCREATITIS
The national non-profit is partnering with Ariel Precision Medicine as part of its advocacy efforts to expand resources, support and treatment to children with this rare and misunderstood pediatric condition.
“Pediatric pancreatitis is regularly misunderstood and misdiagnosed. Often children have multiple attacks and doctors still don’t believe they’re in pain or know how to stop it. Families have to advocate on their own to get their children the help they need, and genetic testing is a critical tool to help evaluate treatment,” explains Christyn Taylor, CEO of Rebecca’s Wish. “But this testing, while useful, costs up to thousands of dollars. It’s too expensive for many families, and insurance often will not cover it. We are determined to remove that financial barrier for as many families as we can and are excited for our partnership with Ariel Precision Medicine to begin.”
As part of this partnership, families can request a genetic testing kit be sent to their house or get one at participating pediatricians offices. Once home, parents swab their child’s cheek and send the sample to Ariel Precision Medicine, which will return a report in 4-6 weeks.
Jessica M. Gibson, MBA, Co-Founder & Chief Executive Officer of Ariel Precision Medicine, says her company has been overwhelmed by the enthusiasm and engagement providers are expressing about this new initiative and the gratitude she’s hearing from patients and families who say this lifts not only the financial burden of genetic testing, but also bypasses a traditional barrier for many families - the risk that it will not be covered by insurance or the perception of how the information may be used by others.
“Genetics are one of the highest risk factors of pediatric pancreatitis so children are at the greatest risk for genetic mutations causing their disease. Families not only want - they really need the data that comes from genetic testing like this” Gibson explains. “Bypassing insurance lets families get access to this information without delays. We hope that by getting this testing, they are able to shorten diagnostic journeys, get definitive diagnoses earlier, gain a better understanding of what’s happening and why and learn of any implications for family members, including siblings.”
Gibson says traditional genetic testing has historically been very complicated for doctors to translate so the company also provides insights designed to make that easier. “One of the critical things we integrate into the genetic information we share with families is links to insights about what it means in patients and most importantly, what they can do about it,” Gibson says. “Unlike traditional genetic testing, we also update our system when new discoveries happen or new information is available and we push that information into patient reports so providers and families can be kept up to date about emerging knowledge in the field.”
“Through this testing, Ariel Precision Medicine provides families with a living document that is so helpful for rare conditions like pediatric pancreatitis that don’t have a lot of treatment options,” Taylor adds. “Having access to information like this will hopefully help in the future as these children grow and - more treatments, best practices and new guidelines become available to relieve their pain.”
About Rebecca’s Wish: Rebecca’s Wish is working to advance cutting-edge medical research, fund fellowships to train doctors, and provide resources, mental health support and more to families of children with pediatric pancreatitis nationwide. The organization founded in 2018, is run by Christyn Taylor and named after her daughter Rebecca who was 12-years-old when she wished to help other children with the rare, little known and excruciatingly painful condition she’s had since the age of seven. Learn about this foundation and join the fight at RebeccasWish.org.
About Ariel Precision Medicine This biotechnology company, based in Pittsburgh, PA, was founded to provide advanced intelligence to better manage complex chronic diseases. Ariel’s technologies are leading a paradigm shift from single-gene genetics to complex gene-to-gene interactions to move beyond simply assessing genetics and instead provide valuable insights that guide clinical decisions with a more comprehensive view of disease trajectory and precise therapeutic options. Learn more at arielmedicine.com
About Pediatric Pancreatitis
Long thought to be extremely rare, it’s now estimated there are 3 to 13 cases of pediatric pancreatitis in every 100,000 children. Chronic pancreatitis is a life-long affliction and progressive inflammatory disorder. There is no cure. It causes relentless and excruciating abdominal pain, vomiting and more. Severe cases require immediate hospitalization and intensive care treatment. The disease is often misdiagnosed and misunderstood because doctors don’t know to look for it in children and often confuse it with other conditions. Children often need a hospital stay and NPO status (not eating or drinking) plus IV pain medication. In severe cases, pancreas transplants, which are still considered an experimental procedure, may be required to save the child’s life.
Laura Manatos
Laura Evans Media
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