One Mom's Mission to End Drug Shortages: "The Most Hopeless I Ever Felt"
“There were a lot of things I had considered from the day I was told my child had cancer. But never once did I consider that she wouldn't get the medicine on this protocol map that I was given. That never even crossed my mind. And then it was a terrible place for me to be in, to then also think: I have to find that drug. Or else -- what? What happens?
Trying to navigate that myself was truly the most hopeless I had ever felt as a person. And my daughter heard. She was in the room when we were told. She knew that she was supposed to get that medicine that day. She knew what was supposed to happen when we were told to go home, that we were just going to have to wait.
She asked me: Am I going to die if I don't get my medicine?
And I did not have an answer for her.”
- Laura Bray
In the most recent episodes of our Conversations Series, we talked with Laura Bray, Chief Change Maker at Angels for Change. The mission of Angels for Change is to end drug shortages through advocacy, awareness, and a resilient supply chain. Laura is driven by her personal experience when her daughter Abby was diagnosed with leukemia at age nine — and the treatment she needed was on a national shortage with a 15-month wait list. “It is this hopelessness I felt when my child needed life-saving therapies, and there were none around that really haunted me and led me to start Angels for Change,” she says.
In this four-part discussion between Laura and our CEO Steve Wosahla, we examine the scope of the problem and dive into the supply chain problems that lead to shortages. Laura also explains what families should do if they find themselves facing this unimaginable barrier to care, and she tells us some of what Angels for Change is doing to help eliminate these bottlenecks and work towards solutions.
Tragically, shortages like those faced by Laura’s family are all too common in pediatric oncology. We’ve heard stories like Laura’s many times over the years. In a 2017 survey, one childhood cancer survivor shared that her treatment regimen was altered due to a shortage and she was given alternate drugs. They worked for a short time but she suffered a relapse within months.
One mom shared: “The chemo drug was no longer available, and my daughter had a life-threatening allergy to the only available alternative. We had no choice but to start the alternate drug in the ICU at a low rate in hopes of breaking through the sensitivities and reactions.” Another family told us that a shortage delayed the start of their child’s clinical trial by a full three months. Some families report having to travel a significant distance - further from home and support networks - in order to find a treatment center with the available therapy.
As Laura explains, “Children are actually uniquely vulnerable to shortages. In the last five years, 75% of the 20 most essential pediatric cancer drugs have been in shortage.” Not only are pediatric oncology drugs more likely to go into shortage than adult essential therapies, but those shortages also last about one-third longer than adult shortages, she says.
A 2019 Food and Drug Administration report (updated in February 2020) found similarly alarming statistics, noting that in the ten-year period from 2009-2019, nine of the eleven drugs used to treat acute lymphoblastic leukemia were in and out of shortage. The report went on: “Despite recent evidence that adding nelarabine to children's treatment regimens improves survival rates and is thus becoming the new standard of care, nelarabine has been in shortage recently, causing much anguish and grief for patients, parents, and clinicians."
→ Read more about this report, including potential solutions identified: FDA Releases New Report on Drug Shortages — Children's Cancer Cause (childrenscancercause.org)
In 2019, there was a national shortage of vincristine - the single most widely used chemotherapy agent in treating childhood cancers. The childhood cancer community sprang into action to ensure that the crisis received much-needed attention by national media, Members of Congress, and federal agencies. Grassroots advocates worked through organizations like Children’s Cancer Cause and the Alliance for Childhood Cancer to put pressure on the pharmaceutical industry and demand a speedy resolution to the crisis. Within weeks of ringing the alarm bell, new shipments of vincristine were on their way to treatment facilities around the country.
The drug shortage issue is complicated and involves multiple factors such as aging manufacturing facilities overseas and a consolidation of suppliers. Most experts believe the US is impacted by shortages more than Europe and payment polices are the root of many of the shortages. There isn’t one simple solution but the work of advocates in the childhood cancer community is going a long way to ensure families in the future are not faced with devastating shortages of drugs needed to treat their child’s cancer.
Laura notes that the COVID-19 pandemic has opened the door to additional potential solutions to this problem, including legislative changes from the Coronavirus Aid, Relief and Economic Security Act (CARES Act) of 2020.
“I’m not a researcher. My experience is not as a physician. But I’m experienced in what it feels like to be told three times: your child doesn’t have the drug she needs to survive. That’s an unthinkable statement to ever give any patient anywhere.”
→ Read more about shortage reporting changes as a result of the CARES Act: Drug Shortage Reporting Rules Prompt Questions as Deadlines Loom (Bloomberg Law, November 10, 2021)
“COVID has not only brought awareness to shortages: it has actually broken down barriers,” she says, urging the medical community to remember the lessons we have learned from the pandemic. "Let's not let those barriers come back up. Let's keep them moving forward in a transparent, collaborative, collective way."