We are the Warn-Johnston Family. We live in Washington State with our daughter Brannon, 15, and son Arly, 12. We love being active outdoors and always look forward to our annual backpacking trips. Last year our world turned up-side down when Brannon was diagnosed with bone cancer. This was devastating and scary news.
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.
We first heard of Angels for Change when a relative sent us a copy of a New York Times article about a series of chemo shortages throughout the United States. Two of the medications listed in the article were involved in Brannon's care. We immediately sent the article to Brannon’s medical team to see if we should connect with the organization to make sure Brannon would not be impacted by the shortage. The medical team assured us there was no way the chemo shortage would affect Brannon's care, and that we shouldn't worry about it.
Weeks later, while at treatment, the hospital told us “there is a shortage and Brannon won’t be able to get her medication.” They said they would give her an alternate drug. But that drug would affect her fertility, require additional surgeries, and would affect her treatment for the following many, many months. Most important, this alteration in her treatment plan jeopardized Brannon’s enrollment in her clinical trial. We couldn’t believe this was the only choice.
Eventually, we remembered the article and contacted Angels for Change on Brannon’s behalf. We filled out a simple form on their website and Laura got back to us very quickly–within just a few minutes. We had contacted a lot of people at this point, and no one was returning our calls, but Laura got back to us right away, over a weekend. It was such a contrast. Laura met us with such speed and efficacy and caring. Clearly Laura had an understanding of what we were going through. She immediately agreed to help. Laura said “In case no one has told you this yet, your daughter deserves her medicine and she deserves better than this. Let me carry this burden for you and help, so you can carry her through treatment.” We all cried together. Up to this point, we really felt no one felt the sense of urgency of this shortage. We struggled to get others to fight with us or for us. It felt very alone.
With Laura’s help we were able to get the medication again. Laura worked with our hospital and was able to help other patients in need in our area too! She even was working with Children’s Hospital Association to make sure no patient like Brannon was impacted by the shortage. This was a huge relief. We could stop worrying and scrambling trying to figure out how we would get Brannon’s next dose or who we needed to contact next. We could breathe again.
Yet prior to contacting Laura, the shortage had already changed Brannon’s scheduled protocol. We worried about the way these changes would impact Brannon. Her chemo is designed to alternate between two chemotherapy agents, and because of the shortage the schedule was changed, which meant she had to have the same agent multiple times in series, and it was really tough on her body. It affected her counts. It affected her immune system. It affected how she felt. And it made the last portion of her treatment much more difficult than it would have been. Even though she received the medication that she needed after the intervention from Angels for Change, her care was still impacted by this shortage.
So what we would like to convey is that for any family or individual with a serious illness the treatment of that illness alone is extremely challenging. When you add to that a supply chain or a drug shortage manufacturing problem that affects care and endangers their life, it's just really more than any family should be asked to confront. It’s been exhausting. It’s been scary. It’s challenged us in ways that I’m not sure we ever would have expected. It’s a lot. Too much to put on a patient going through an already difficult treatment.
We are grateful for Laura and Angels for Change. Having an organization to be there and help was so important. But we really hope, working together, we can eliminate the shortage issues to create a better future for all. Every patient deserves access to their medicines. Drug Shortages should not exist for anyone!
Dana and Jennifer
