Honestly, I wasn’t sure that Angels for Change could help because we are not located in USA, but they really did a wonderful job in no time.
My name is Jennifer, and I am a childhood cancer survivor who has been impacted by the national drug shortage. Rhabdomyosarcoma became a common word in my family when I was three years old. By the time of diagnosis, the cancer had metastasized from the middle ear into the mastoid and eustachian tube. The oncology team told my parents there was less than a three percent chance for me to live out the year. There was no definitive treatment protocol to defeat this rare form of cancer, and the survival rate was extremely low. Over the next two and a half years, I underwent surgeries, full head and neck radiation, and a four-drug chemotherapy cocktail. Just before my sixth birthday, I became one of the rare survivors and entered remission.
Gavin started showing symptoms early on in life. Years of seeing specialists and countless tests and imaging only led to more questions. Our local team applied to the Undiagnosed Disease Network, and Gavin was soon accepted. During our stay at Duke University Hospital, a genetic test revealed a tiny mutation on the NLRP3 gene that was causing uncontrolled systemic inflammation.
Brannon’s treatment involved so many hospital visits and chemotherapy sessions. It is so hard to watch your child go through cancer treatment. This terrible crisis was made worse when a few months into treatment Brannon faced a chemotherapy shortage that disrupted her care.
During treatment, he had lots of obstacles and hurdles that he had to overcome, including several drug shortages. Our son faced 4 drug shortages during his treatment. Each one created a lot of fear and uncertainty that he was not going to be able to get the medicine he needed.
As parents, we lost the ground under our feet. How can crucial medicines for treating children suffering from cancer not be available? How do hospitals specialized in treating kids not have alternatives or a mechanism to prevent these kinds of shortages? Why do patients, like us, basically depend on one source supplying this medicine?
