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.
This Mother’s Day, St. Baldrick’s CEO Kathleen Ruddy reflects on the strength of the moms of kids with cancer, the gifts they give every day, and what we can do to give back.
Ambassador Julia cuddles with her mom, Melissa. When she was 8 years old, Julia was diagnosed with a grade 2 ependymoma in her brain. After many tough treatments, she’s now stable.
Over the years that I’ve worked at St. Baldrick’s, I’ve met thousands of cancer moms. I have cheered with them when times were good and I have ached for them when times were bad. Most of all, I look at these strong women and I am inspired. These women are dragon slayers. They are rocks – steady, stable and present. They are advocates and warriors, fighting for their child’s best interest, and at the same time, trying to keep their own fears at bay. These women are thrust into the role of nurse and teacher and therapist. They are master jugglers, balancing career and relationships and home and hospital.
From the child who donates his piggy bank to help kids with cancer, to the volunteer who matches every gift raised, there are many reasons to be confident that researchers will gain the upper hand against childhood cancer. In honor of Volunteer Week, here’s the story of two female volunteers who made an indelible impact on me and showcase why I am constantly amazed, surprised and humbled by St. Baldrick’s volunteers…
Bride-to-be Corrine goes under the clippers (held by her fiancé) during the Fado head-shaving event in Chicago.
On March 9, 2018 at the Fado Irish Pub head-shaving event in downtown Chicago, I was humbled by two women who defied convention by shaving ahead of one of life’s most important events.
St. Baldrick’s CEO Kathleen Ruddy has seen it all. From the years before the Foundation was officially established to today, she has watched St. Baldrick’s grow from a few passionate volunteers to become the largest private funder of childhood cancer research grants in the country. Now take a trip down memory lane with Kathleen, to where it all began.
A shavee is all smiles at the St. Baldrick’s Space Coast Conquers head-shaving event in Viera, Florida, which is one of thousands of events across the country and beyond.
18 years ago, St. Baldrick’s was a tiny group of passionate volunteers that aimed to do a big thing – conquer childhood cancers. The first event, established by the reinsurance industry in 2000, intended to raise $17,000 and raised $104,000 instead. Shavees scratched those newly shorn domes and said, ‘Maybe we should do this again!’
In 2001, these intrepid volunteers set forth to grow St. Baldrick’s throughout the U.S. for the following St. Patrick’s Day.
Kathleen poses with the St. Baldrick’s office’s honorary Knight Crusader, who wears a medal and crown.
In an age of storytelling, St. Baldrick’s has an interesting one. Three resourceful men – John Bender, Tim Kenny and Enda McDonnell – founded the charity based upon a challenge to shave their heads bald. Eighteen years later, St. Baldrick’s helps children worldwide, has engaged volunteers on six continents and is the largest non-government funder of childhood cancer research grants in the world.
That is the power of individuals. But John, Tim and Enda didn’t do all of this on their own.
If you’re like me, you often have to remind yourself to slow down and appreciate the here and now. It seems everything in modern life encourages us to focus on tomorrow. Stores promote Christmas shopping while children select Halloween costumes, and those same children spend their childhoods awaiting summer vacation or anticipating their next school year.
During the holiday season, St. Baldrick’s CEO Kathleen Ruddy likes to reflect on the blessings of the past year.
Sometimes I feel I’m wishing my life away, which is why I appreciate the season from Thanksgiving to New Year’s Day so much. It’s one of the few times we officially take stock of our blessings, treasure our time with those we love, and encourage each other to reflect upon the past year.
Usually, I’m most grateful for the things that are new, like the approval of Kymriah, a CAR T cell therapy for kids with a particular type of acute lymphoblastic leukemia (ALL) and the first gene therapy approved in the United States. Given to children with few or even no treatment options for their cancer, this St. Baldrick’s-supported therapy is effective in 83% of the children who receive it – children who can now celebrate the holidays and the promise of a future thanks to research supported by St. Baldrick’s.
Kathleen smiles with (from left to right) Beau, Hannah, Charli, Kathleen and (front) Josey at the Hannah’s Heroes event in Grand Cayman.
Before my recent visit to Grand Cayman for their annual Big Shave, I had only read of the concept of CaymanKind; now I have experienced it firsthand. The people of these three tropical islands are remarkably hospitable, sunny in outlook and overflowing with philanthropic spirit.
A foundation unlike any other needs a one-of-a-kind leader — and Kathleen Ruddy, the CEO of the St. Baldrick’s Foundation, certainly fits that bill. But you don’t have to take our word for it — read on to get to know our CEO!
Kathleen has been with St. Baldrick’s since the foundation wasn’t much more than a new kind of event to raise money for childhood cancer research. Needless to say, it’s come a long way – and so has Kathleen.
We think it’s time you all got to know our fearless leader a little bit better, so we asked her a few questions about how she got started, her goals for St. Baldrick’s, and her hopes for the future.
President Obama recently announced a new national effort to conquer cancer. See how St. Baldrick’s is already at work and how you can help.In Tuesday’s State of the Union address, President Obama announced a “moonshot” to cure cancer: a new national effort to conquer cancer once and for all.
We fully support this effort, and together, I believe we have the passion, creativity, and energy to help make it happen.
Had it really been a year since my last skin cancer screening? Yes.
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