February: Why Access and Equity Matters and Why Madelyn James?
On September 25th, 2021, our lives and perspectives were forever shifted when we brought our four-month-old, twin daughter, Maddy, to the ER and the doctor said, “your daughter has cancer.”
Immediately, I started writing and sharing our story, Maddy’s story, on Caring Bridge. I posted on social media and was honored and amazed by the amount of support and love we received from family, friends from all walks of life, co-workers, and friends of friends. Our network was large. We always felt the embrace. And, we felt like the “lucky ones” because of our very generous community.
I left my job as an Executive Director at a small nonprofit. We recognize that this was a privilege to make this decision. My partner and co-founder, Dan works at a big company, and in order to care for our twins, now one with a critical medical condition, we’d have to learn a whole new language of oncology to advocate for Maddy.
My mom moved in. We moved to Philadelphia to switch Maddy’s care to The Children’s Hospital of Philadelphia, CHOP, because Maddy’s cancer was so rare and needed the best care possible. Then my sister-in-law moved in with us. Then my mom again. Then my other sister-in-law. Our daughter, Hannah, Maddy’s twin sister, could be loved on by our family in the ways we wanted for her when we had to go to the hospital at night to be with Maddy. Friends quarantined to see us and stay with us. Maddy and Hannah experienced life beyond the walls of the hospital.
We know that this is not the story for most people. Our social workers were constantly in awe of not only our community of support from GoFundMe and Meal Train, but also, from our very generous insurance plan that allowed our family to stay together, create moments of joy, and not go bankrupt.
Every year, 15,000 children are diagnosed with cancer. Out of those 15,000 children, 4,000 of these children live in poverty in the United States. According to the work of Dr. Kira Bona and her research from the Bona Pediatric Cancer Equity Lab from Dana-Farber Cancer Institute. “Children with ALL (Acute Lymphoblastic Leukemia) living in high-poverty areas experienced a 5-year Overall Survival of 85% as compared with 92% for those in low-poverty areas—despite treatment on the same clinical trial.” Imagine your survival rate is dependent on how much money you make or where you live? We must do something about this. It’s solvable. We can save lives. We must speak up for our children.
Further, our nurse practitioner, Katie Oranges, from Children’s Hospital of Philadelphia shared that, “for some patients, cancer isn’t even one of the top 10 needs a family can worry about.”
That’s why we created Madelyn James.
We know we can do more to increase awareness and to create access and equity in pediatric cancer. Small interventions. Supporting a family holistically.
“Families should not be faced with the decision to choose between the most novel treatment option or keeping a roof over their head,” Stephanie Fooks-Parker, Social Worker at Children’s Hospital of Philadelphia and Madelyn James Board Member, shared.
We are here to support and partner with families in the way they want to partner with us. Direct support. Transportation to and from the hospital that’s best for your child; an apartment close to the hospital so you can enjoy life when you get to be home; food gift cards for each family so every day is easier; equipment to set up your new, temporary home with materials so you can care for your child (if they have a line you have to flush every day or if you have to give chemo/medicine at home); if you need to take time off work; if you want to keep your family together in pursuit of a cure.
This is what we do at Madelyn James.
Maddy’s cancer was rare. It was aggressive. There is a 50% event-free survival rate, according to the latest Children’s Oncology Group study. And, we tried everything. We had access. And, Maddy did not make it.
We want to see outcomes change so that as a system, we can focus on the truly refractory children, like Maddy, whose cancer we can not yet cure with modern medicine. And, in order to do that, we need organizations to focus on access and equity. We need to stand up for our children, our babies.
We imagine a world where no family has to decide the fate of their child based on where they live, how much money they make, or how they identify. Every child has an equal right to a cure. Every family has the right to stay together.