Kids with cancer and their families are in a constant state of worry. While we can’t always ease those burdens, we can prevent them from worrying about whether their lifesaving medication will be available. We must do more to prevent drug shortages.
Over the past decade, pediatric cancer drug shortages have become more and more common. The most recent is a widely used chemotherapy drug called Vincristine. Vincristine is a sterile generic injectable that has been approved to treat children with cancer for over 5 decades. It is utilized by nearly every child with cancer and is a critical component of treatment regimens for children with leukemias, lymphoma, brain tumors, bone tumors, neuroblastoma, Wilms tumor, and rhabdomyosarcoma.
Doctors and families are particularly concerned about the Vincristine shortage because there is no alternative or recommended substitute for the drug. Given the lack of a comparable replacement, doctors will be forced to ration the drug by either skipping or lowering doses. The shortage is already causing pediatric oncologists to alter clinical trial treatment protocols and even delay trial enrollments.
For years, Vincristine was manufactured by both Teva Pharmaceuticals and Pfizer. In July, Teva notified the Food and Drug Administration (FDA) that they planned to discontinue the drug leaving a single manufacturer responsible for the entire U.S. supply. Pfizer has encountered a manufacturing delay but is working to produce additional shipments to try to address the shortfall. Pfizer recently notified the FDA that they hope to rectify the problem by the end of October, but that there may be significant supply problems that could last until the end of the year.
St. Baldrick’s is committed to helping solve the childhood cancer drug shortage crisis. We are already working with our champions on Capitol Hill on longer-term solutions and continue to work with the broader childhood cancer community on advocacy solutions to encourage the government to do more to guarantee safe, uninterrupted and sufficient cancer drug supplies for children in the United States.
For any family that is currently having difficulty obtaining vincristine for your child, the FDA recommends that you contact them at firstname.lastname@example.org.
Read the letter from Dr. Peter Adamson, Chair of the Children’s Oncology Group, to the childhood cancer community on steps to resolve the shortage.
Project:EveryChild is an ambitious initiative to find better cures for every type of childhood cancer, no matter how rare. And it is only possible because of the combined efforts of researchers, families of children with cancer, and you.
There are about 14,000 new cases of childhood cancer each year in the United States, and the most common – acute lymphoblastic leukemia – accounts for about 3,500 of those. But there are some types of cancer that are diagnosed in fewer than 100 children a year. The rarer the disease, the more challenging it is for researchers to make progress.
No matter how common or rare, each child deserves the best chance at a cure. That’s where Project:EveryChild comes in.
September is here, or as we call it: Childhood Cancer Awareness Month (CCAM) – which, as you’d imagine, is a pretty big deal at the St. Baldrick’s Foundation, the #1 private funder of pediatric cancer research. Every year at this time there are blogs, social posts, invitations to change your Facebook profile or use a hashtag on Twitter related to CCAM – but this year you’ll also be seeing something new.
Although CCAM helps build awareness of pediatric cancers, there’s a need for a more permanent rallying cry. We don’t want September to be one month when people tweet and share Facebook updates about kids with cancer and then move on – after all, somewhere in the world, every two minutes a child is diagnosed with cancer. We purposely created this campaign to bring this reality front and center.
First, though, a little background.
Most St. Baldrick’s Foundation supporters know they are making hundreds of childhood cancer research projects possible. They may not realize the research they supported has been published in more than 1,350 research publications since 2005.
We’ll touch on just a few of those here. But first, why are publications important and how do they help find cures for childhood cancer? The answer started long ago.
One of the most vexing problems in pediatric cancer research is trying to find out why certain treatments work for some kids and not for others, or why some kids suffer more health consequences from the same treatment that others do not.
If you’re dealing with something concrete – like plumbing issues in your home, or a car that has suddenly stopped working – it’s usually a trial and error process that will tell you why. Why does the faucet leak? The pipe wasn’t properly tightened. Why did the timing belt go out on the car? Well, those things are only good for so many miles.
Pediatric cancers are much less concrete, and way more complex than plumbing or maintaining a car. And, given the life and death nature of pediatric cancer diagnoses, it’s of vital importance to ask the right questions and get the right answers.
When the St. Baldrick’s Foundation announced its latest grant recipients today – via a press release that you can see here: Press Release – we were pleased to report that more than $17 million was awarded to a total of 55 recipients.
To put that into perspective, we award $27 million toward grants and advocacy efforts this year, so this represents the largest of our funding cycles during the year. (A complete list of the institutions that were awarded grants can be found at the end of this blog post. )
The League of Legendary Heroes is an order of dedicated volunteers who’ve participated in St. Baldrick’s Foundation events for three or more years. Each year, St. Baldrick’s names a League Champion to lead and inspire this group to raise money for lifesaving childhood cancer research.
Georgia Moore, our newest League Champion of the League of Legendary Heroes, just celebrated her 19th birthday on Dec. 30. The following day, New Year’s Eve, marked nine years since Georgia was diagnosed with acute lymphoblastic leukemia (ALL).
Our 2019 League Champion, Georgia Moore (third from left), appears with her family at Tufts University.
Each year, the St. Baldrick’s Foundation picks five kids to serve as Ambassadors. In this role, they represent the thousands of kids affected by childhood cancers and remind us of the importance of supporting childhood cancer research.
Take any group of kids and they’ll all have their own way of talking, their own opinions on books, movies, and video games, their own favorite foods.
But there is one thing the St. Baldrick’s 2019 Ambassadors have in common: childhood cancers. Beyond that, they share the support of loving families and a desire to inspire others to raise money for childhood cancer research.
Our 2019 Ambassadors, from left to right: Aiden, Arianna, Sullivan, Gabby, and Brooke.
A new drug approved by the Food & Drug Administration (FDA) is great news for childhood cancer patients.
The drug – known as larotrectnib, or Vitrakvi – is the first developed to target a key genetic driver of cancer, rather than a specific type of tumor. In this case, the drug targets a gene fusion called NTRK, found in some patients with many different types of cancer.
Dr. Federman, a St. Baldrick’s Scholar from 2009 to 2014, was directly involved in Vitrakvi’s development.
With 2018 winding down, it’s time to thank this year’s St. Baldrick’s Ambassadors for their help raising funds and awareness for pediatric cancer research. This group of five kids and their families inspired us with their unique stories of courage and their refusal to give up hope.
We’ll be welcoming a new group of Ambassadors in the new year. For now, let’s check in on the 2018 team to see how they’re doing and what they enjoyed about the Ambassador experience.
Our 2018 Ambassadors, from left: Brooks, Kellan, Maya, Zach, and Julia.
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