Every year, the Children’s Hospital Association (CHA) brings patients and their families to Washington D.C. for Family Advocacy Day, an event dedicated to elevating patient stories and educating federal lawmakers about the role children’s hospitals play in the overall well-being of children. Children’s Minnesota patient, Anna Wakefield, 12, and her family were among the many families from across the country who traveled to Capitol Hill this year to share their story and increase awareness about public policies that are impacting children’s health.
Anna’s story
Shortly after birth, Anna’s parents, Beth and Matt, brought their 5-day-old daughter to the Children’s Minnesota emergency department when they noticed Anna was having a difficult time taking her milk. Our kid experts quickly noticed that Anna was having apnea spells and was aspirating. Anna was immediately admitted to the neonatal intensive care unit (NICU) for the next 11 days, where she was later diagnosed with a rare genetic condition and chromosomal anomaly called ring 21 chromosome with q deletions. This would be the start of many more hospital trips back to Children’s Minnesota to get expert care for Anna.
“It [Anna’s diagnosis] completely changed everything. We had gone from living a typical family life to one tied very closely to the medical world, with frequent primary care appointments, many new specialist appointments and rehab therapies,” said Beth.
Anna’s initial diagnosis resulted in the need to get a G-tube placed to help with feeding. Since then, Anna has also been diagnosed with epilepsy and a rare autoimmune blood disorder. The family found that having access to the Tax Equity and Fiscal Responsibility Act (TEFRA) medical assistance coverage from Minnesota was crucial to getting the specialized care that Anna needed.
Family Advocacy Day
For the first couple of years of Anna’s medical journey, the Wakefield family solely used private health insurance to help cover her care as they were not aware of the full benefits of TEFRA.
“Every year, we planned to fully exhaust both our insurance deductibles and out-of-pocket maximums. It was costly but necessary,” said Beth
When the family learned more about TEFRA a couple years later, they decided to apply for Anna. The process was long and required lots of paperwork, but once it was approved the supplemental insurance was incredibly helpful in lessening the financial burden. TEFRA fully covered Anna’s feeding tube formula and allowed her access to other grants and waivers.
At Family Advocacy Day, the Wakefield family met with Sen. Tina Smith, Rep. Pete Stauber, Rep. Angie Craig and Sen. Amy Klobuchar’s staff. The family also shared their story and spoke about how crucial it is for families of children with complex medical needs to be able to access TEFRA as a supplemental insurance. Another policy the family spoke on and advocated for was the need for continued support and funding for programs that train pediatrics specialists to care for kids like Anna.
Thank you to Anna and the Wakefield family for being willing to share their story and advocate alongside patient families from across the nation. This work is vital to ensuring children in the United States can access the health care they need.
