Beyond The Coat

Last week, it was announced that the Childhood Cancer STAR Act of 2017 was fully funded for the upcoming fiscal year.  While not perfect, this has been a big win for childhood cancer patients and their advocates.

The Star Act (Cancer Survivorship, Treatment, Access, and Research Act) authorizes the National Institutes of Health (NIH) to provide support to collect the medical specimens and information of children, adolescents, and young adults with selected cancers that have the least effective treatments in order to achieve a better understanding of these cancers and the effects of treatment.

Yeah…OK, but what does that really mean?

First, it means money.  Federal money.  We’ve been saying for years that our children are worth more than 4.   That term was coined because pediatric cancer has historically gotten around 4% of the National Cancer Institute’s budget.  The last hard numbers I could find was about that pediatric cancer research received 3.8% of the NCI budget. To read more about the NCI budget and how it relates to pediatric cancer, go here.

The STAR Act authorizes an additional $30 million a year to be specifically allocated to childhood cancer.   You guys.   30 million/205 million = 13.3% increase in money for pediatric cancer.  That’s fantastic. Do I think our kids deserve more than that?  Yeah of course, but it’s a place to start.   Let’s break down the STAR Act section by section and see where this money will be going.

Section 101

This section specifically outlines that money should go towards repositories and biospecimen research.  Repositories are just places where things are stored and biospecimens are samples that come from patients.  Biospecimens can be blood samples, DNA swabs, urine samples, tumor tissues..really any biologic material that comes from a patient.

I can’t tell you how important this is to advance the field of pediatric cancer.  Pediatric cancer is rare with a total of 15,000 cases each year in the United States.  When you drill down into the specific types of cancer, the numbers get to the level which makes it very difficult to research.   Take for example, osteosarcoma, there are approximately 350-400 cases in children each year.  It has taken me several years (at least 5…close to 6) to complete a project using 130 blood samples from osteosarcoma patients.  If I was studying breast cancer, I could have collected 130 blood samples at my own institution in a matter of a year.

Right now we are in a ‘genomics’ boom.  This means we are able to look at the genetics of the tumor and the patients in unprecedented ways.   If we don’t have a good record of where the specimens are physically located and the clinical information that goes with them, we will be 15 years behind the technology before we can blink.

I know, I know.  You are thinking, “how hard can this be to store some samples and some information about them?”  I thought the same thing when I first started research.  It turns out, this takes a massive amount of time, effort, and money.  A good biorepository is worth its weight in gold.  A poorly annotated or disorganized one is worthless.  Section 101 also outlines that funds can/will be used to maintain an “interoperable, secure, and searchable database” so that we know what the heck is available to study and what questions can be asked and answered.

Think about this.  There is a lot of media coverage on ‘precision medicine’ or ‘targeted therapy’.  This means that a drug specifically targets something wrong with that particular cancer cell, such as in Gleevec or larotrectinib.  We need these biospecimens and we need good clinical information with them so that we can continue to do these types of genetic studies so we can search for more effective, less toxic therapies.

Additionally we need the regular genetic information from people  (not just from the tumor) and their outcomes so that we can figure out why some people get more sick from chemotherapy than others.   This is important and I’m glad it is addressed in the STAR Act.

I’ll go into the other sections in the upcoming posts.  It’s been an exhausting week full of highs and crushing disappointments, so I am off to bed.

Like what you just read? Show us some love and share it too!