Fight for compassionate use reform goes to Washington
A proposed new law could make it easier for terminally ill patients to get access to potentially life-saving drugs. The process, known as expanded access, or compassionate use, was a topic at this year’s annual Childhood Cancer Summit in Washington, D.C., Friday.
The summit is the yearly meeting of the Childhood Cancer Caucus, co-founded in 2009 by Central Texas Congressman Michael McCaul, in order to better direct Congressional resources and efforts to the cause of preventing pediatric cancer.
McCaul was also a friend of Austin attorney Andrea Sloan, 45, who waged a brave, public battle for compassionate use in 2013 while in the final stages of ovarian cancer. After months of requests, an anonymous drug company ultimately granted Sloan compassionate use of a drug, but her disease had progressed quickly and she passed away on Jan. 1, 2014.
McCaul said he is ready to introduce new legislation in Congress in Sloan’s honor that would keep other patients from having to wait so long for their requests to be granted—time they do not have.
Father Of Cancer Patient Repays Act Of Kindness In Beautiful Way
To this day, Darren Greenwood doesn’t know who was responsible for the care package, but it couldn’t have come at a better time.
It was 2011 and Darren’s son, Joe, was about to be diagnosed with leukemia.
Joe, 17 at the time, had begun feeling ill during a family vacation and had gone to see his doctor upon their return. After looking at the results of his blood tests, the doctor told Joe and his parents they needed to go directly from their home in Ripon, outside of Modesto, to the Kaiser Permanente Santa Clara Medical Center.
They arrived late. They were tired. They were hungry.
That’s when they got the care package.
“Somebody at some time had made some kind of donation to the hospital,” Darren says, “so that new leukemia patients and their families would get one.” Darren says, in retrospect, it wasn’t important what was in the package, just that it was there.
“It was just the coolest thing,” Darren says, holding back tears, “that somebody somewhere was thinking about you.”
Erin’s Story: Being a Childhood Cancer Survivor
Now, in my late thirties, I look at my life, I am thankful I am a cancer survivor. It has shaped so much of my life. Yes, it has given me a scar, one kidney, anxiety and depression. But it has also given me more compassion, more empathy, more strength, a recognition that we are given just one life to live, and how we live that life for our faith, our family, ourselves is so important.
This Is What Pediatric Cancer Looks Like
“I never thought I’d hear those words, ‘Your daughter has cancer’ … and then one day I did,” says Melissa Bradley, whose 4-year-old daughter, Belle, is currently in treatment.
The devastating reality is that a parent hears that news every three minutes.
And while childhood cancer is the leading cause of death by disease in kids under 15, research remains underfunded — currently, less than 4 percent of the National Cancer Institute’s budget is allocated to research it.
That’s why families, medical professionals and advocates are Going Gold this September for Childhood Cancer Awareness Month — to give the disease, and the kids affected by it, the attention they deserve.
“People tend to shy away from such a subject because it is terrifying to even fathom happening to someone you love,” says Paula Crosby Flake, whose son and husband both died of cancer. “There is not enough ‘talk’ about pediatric cancer.”
While it is devastating to see children who have to fight this disease, or hear the stories of those who we’ve lost to it, their parents want their daughters’ and sons’ stories to be told — and no two are the same.
Helping Families Dealing With Cancer: Do’s and Don’ts
By Claire McCarthy, M.D.
DO
Reach out. Sometimes, fear and worry can be paralyzing. We can get so worried about saying the wrong thing that we don’t say anything at all — leaving our friends feeling alone. So, reach out. Send a text, an email, a card, a Facebook message; while talking on the phone or visiting can be helpful, too, it’s often best to let the family schedule the call or visit. Don’t worry so much about what to say; “Thinking of you,” or “I am here to help” are fine.Remember that cancer affects the whole family. Sometimes babysitting other children — or just taking them to do fun things — helps tremendously. Caregivers need support, too — whether it’s a meal, a shoulder to cry on or a gift certificate for a massage; don’t leave them out.
DON’T
Assume you know what the family needs. Every family is different, and you don’t always know what everyone else is doing. Maybe they are drowning in casseroles — but need someone to walk the dog. Offer specific ideas- – but also ask, genuinely, what they would like.
20 Things a Cancer Mom Knows By Heart
I learned that kids can get cancer when Jackson was 1 year old. He’d just learned to walk. He still wore OshKosh B’gosh overalls and loved to be rocked to sleep. There was nothing that he did wrong, or was exposed to; one day, there was just a lump.
Chemo. Radiation. Surgery. Stem cell transplant. Immunotherapy. Intensive Care. Oncology. Even though it’s been four and a half years since he finished treatment, some days it feels like it was yesterday.
At times, I think I was born the day Jackson was diagnosed. The world falls silent as cancer shuts out all the background noise of work stress, mortgages, that extra 10 pounds or what’s on TV. It awakens a level of empathy to suffering and an awareness to what’s truly important in life.
Once a cancer mom, always a cancer mom. These are 20 things I know by heart:
- It is the most unnatural thing in the world to be told your child has cancer.
- There’s nothing you can do or say to take it away from them. There’s no fixing it.
- Babies can be born with cancer.
- Toddlers can lie on the floor and throw a tantrum while having cancer.
- Little Leaguers will miss their games because of cancer.
All of Me (John Legend cover) #StepUp for Children featuring 6-year-old Lily Noakes and 14-year-old musician Emily Brennan
Nearly $400,000 raised for pediatric cancer research
Over 1,000 Devon Still jerseys were sold in the first two days, with all proceeds going to Cincinnati Children’s hospital and in less than a week, nearly $400,000 were raised.
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The Medical Minute: Research Continues Improving the Odds for Kids with Cancer
Dr. Valerie Brown, clinical director of the Pediatric Hematology/Oncology Experimental Therapeutics Program at Penn State Hershey Children’s Hospital, said that although cancer treatment has improved substantially over the last 50 years, there’s still a long way to go.
Survival rates have doubled from 40 percent to 80 percent among standard risk patients since the 1970s, Brown said. That’s the good news. But one out of five children still die from the disease.
“We’ve sort of reached our limitations for how to shuffle the different standard chemotherapy agents,” she said. “We have used these drugs as intensely as possible and in as many different combinations as possible.”
“We’ve reached the limit with these drugs, and yet a proportion of children will still die from their cancer,” Brown said.
That is why Brown and other pediatric oncologists and researchers have focused their efforts on understanding what gives high-risk patients’ cancer cells a survival advantage. Her expertise is acute lymphoblastic leukemia or ALL, the most common childhood cancer.
Recent findings have revealed a “kinase signature” genetically programmed within the leukemia cells in patients who have a harder time achieving remission. Those patients are predominantly Hispanic and Native American. This discovery has led to the incorporation of novel drugs that target this “kinase signature.” Brown believes this discovery will lead to genetic testing of a patient’s cancer cells in order to personalize the treatment course as being the standard at the time of a cancer diagnosis.