Shortage Spotlight:
Tiffanie & Finn
My name is Tiffanie. I am a mom of two (Harper and Finn), wife, and nurse. In January of 2020 my son, Finn, was diagnosed with Acute Lymphoblastic Leukemia. No amount of medical education, training, or experience prepares you for the news that your child has cancer. It feels like an out of body experience. I felt helpless, heartbroken, and numb.
A few months ago, when Finn was completing one of the harder phases of Chemo (known as consolidation), he had an allergic reaction to a medication called Peg-L-asparaginase. This medication is well known for causing allergic reactions, many times anaphylactic (kids stop breathing). It is a proven and important medication to help with Finn’s type of leukemia, which is why they still use it, even with the high amount of reactions that kids have with it.
However, once a child has an allergic reaction, they have to switch to Erwinaze (it is given in a series of intramuscular shots over a 6-day period). Unfortunately, and surprisingly, Erwinaze has had many shortages so many times kids don't have access to this medication and have to skip it altogether. Studies have shown that skipping this medication can negatively affect relapse.
We live in the United States of America and children don't have easy access to life-saving drugs while fighting for their lives! This should never happen in a country that prides itself on our resources and accessible medical care.
So here we were in Consolidation, knowing we were nearing the end of that phase. This is a VERY important phase of treatment as we were waiting to see if Finn was in remission. If he didn’t reach remission during this phase, we would have had to start thinking about bone marrow transplant and many other scary options, so this was a BIG deal. Because of the miracle of medical research leukemia is pediatric cancer that can be cured, but the cure is dependent on a “cocktail” of medicines given in very specific timeframes. Without this cocktail, the chances of relapse can drastically increase.
Knowing that Finn may skip a medication in this phase was terrifying! What can I do? How can I help my son? I spoke with Finn’s doctors, our hospital pharmacy coordinator, and called JazzPharmaceuticals (the company that makes the drug) about this. Everyone said we would have to wait. When I spoke to Jazz, they said they didn’t know when the next batch would be available. They stated that this drug was nowhere to be found in the United States, that everyone was on a shortage, that it is an ongoing issue.
It appeared that we had no other options, until one night (on the many nights I stayed up researching all that I could about Finn's leukemia), I stumbled upon a website called Angels for Change. I read the intro and it was created by another mom (Laura Bray), like me, whose daughter was battling A.L.L., like Finn, and how she struggled to get Erwinaze for her daughter when she needed it.
I messaged this mom and the next thing I knew; we were having phone conversations on how she was going to help us find Erwinaze. She explained that we would need to call around to hospitals across the U.S. to try to find it. Later that same day, Laura (from Angels for Change) informed me that McKesson Corporation (the distributor of Erwinaze) put together a team that was willing to call hospitals across the U.S. to try to find the Erwinaze for our family, for my Finn!
I was floored by this news. Finn needed 12 vials of Erwinaze. Within 48 hours of talking to Laura(Angels for Change), we had found all 12 vials! A carrier personally came to take the vials to the airport and shipped them overnight to our hospital. All 12 vials arrived safely and Finn received all of this medication. A couple of weeks later, we found out that Finn had reached remission!
Angels for Change truly speaks to its name. This is an organization that represents what angels do, by providing for us and bringing comfort to an already stressful situation. Laura is amazing and an inspiration to all of us parents going through this battle! Hopefully one day she and I can meet in person.
Patients must have access to life-saving drugs when doctors prescribe it. Please join my family in the Angels for Change, change maker cause.