Farewell DC

Although I have enjoyed every moment of this past month and a half, this last week of my internship has definitely been the best. I say that because, in the past week, I saw my work here come full circle. I spent Monday being trained on how to train other youth advocates. The following day, I was to lead a group of young teens as they lobbied on the Hill for the RACE for Children Act as part of Kids v Cancer's Youth Lobby Day. I couldn't sleep on Monday night because I was so excited and nervous at the same time; I couldn't wait to meet my group and help them with their little speeches, but I was worried that they might not like or respect me. The day ended up going even better than I could've hoped for. I met with my group around 8:30am, and, with a little help from my extremely large iced coffee, we jumped right into the excitement of the day. My group consisted of Sarah (12), Emily (13), Julianna (14), and David (15). We all got along super well right from the start. We introduced ourselves and got to learn about each other's connections to childhood cancer. Sarah is a cancer survivor, Emily and David's father survived childhood cancer, and the same is the case for Julianna's older sister.

To say there was resilience in that group would be an understatement; these kids bounced back and then some.
The day continued as I taught them a little about the RACE for Children Act and how to conduct a meeting, and then we held mock meetings to help them prepare and build their confidence. I remember how nervous I was when I was going through this training, so I was beyond impressed by how well these kids carried themselves. They were so passionate, well-spoken, and downright convincing. I had no concerns when I sent them into their first meeting...or the four meetings after that. Kids v Cancer hosted this day in hopes of benefitting the kids, but I think the kids ended up benefitting our fight for RACE! Overall, I had so much fun leading my group. We were joking around and telling stories all day, but they got serious when they knew they needed to. I went into the day in hopes of teaching them something, but they were the ones who taught me. These kids took a day out of their beloved summer to come all the way to DC and advocate for something they believed in. It was beautiful, powerful, and inspiring. It was such an honor to meet them, and now I have four new friends (whether they like it or not)! I think we could all learn a thing or two from these kids, the most important being that it's never too early to start fighting for something you're passionate about.                    

It's Not Just About the Research. It's About the Kids

Most of our meetings are with young people. This past week, though, we had a meeting with a Senior Legislative Assistant who happened to be a bit older. This was a nice change of pace; she opened up a whole different dialogue with us and offered a unique perspective. When we were done with our presentation, she asked us if we had a stance on the republican healthcare bill. We all glanced unknowingly at each other and then told her that our organization has not taken an official position on it. it.

We told her that we support whatever would give kids access to the life-saving drugs and treatments they need.
She said she agreed and proceeded to suggest that we start advocating for this (a.k.a. against the republican healthcare bill) in our meetings along with the RACE for Children Act. She looked us straight in the eyes and said that no matter how hard we push this bill, even if it gets passed, it will mean nothing if kids can't afford their healthcare   I could feel the floodgate of tears about to burst as I walked out of that meeting. This just hit me so hard. I am not super educated about the republican healthcare bill, but based on what this staffer and others in the pediatric cancer community have been saying, I'm scared. If RACE passes, it will lead to new research and clinical trials. This will lead to the development of new pediatric cancer drugs. This should lead to saving kids' lives, but this won't happen if kids don't have access to the drugs through their insurance plans. I hope this is not the case and I intend to educate myself further on this issue rather than trust opinions. The idea of all this work I'm doing here going straight down the drain truly hurts my heart. Now, not only am I hoping for RACE to pass, but I'm also praying that whatever healthcare bill is passed ensures children have access to the best treatments. As a lobbyist for a bipartisan bill, I've been told to not get too controversial on other issues, but I cannot sit back while kids' lives hang in the balance of a piece of legislation that is being discussed behind closed doors. I won't accept it, and neither should you; we all deserve to know the facts and make informed decisions.  
 I will fight to make sure that RACE is passed, and I will fight even harder to make sure that it is enacted both fairly and effectively
Will you join me? Kira is currently in Washington representing Swifty as a Youth Advocate for Kids v Cancer. Her focus is educating legislators on the urgency in getting the RACE for Children Act passed. You can follow her updates on our Facebook page. www.facebook.com/swiftyfoundation

Catching the Law up With Science

 

The RACE for Children Act is an update of the Pediatric Research Equity Act (PREA) which requires drug companies to develop their drugs not only for adults, but for children as well.

The second loophole in PREA has to do with the scientific understanding of cancer. In the past, cancers have only really been identified by their physical location in the body. As a result, adult cancer drugs have been receiving PREA waivers because adult cancers often occur in different places than pediatric cancers (i.e. kids don't get lung cancer, so there's no reason to test this new lung cancer drug in children. Same for breast cancer, prostate cancer, etc…. see how this is a huge problem??)

However, in recent years, it has been shown time and time again that there are certain genetic mutations that cause cancer in both adults and children. In these cases, although the tumors may occur in different areas of the body, they can be traced back to the same molecular source. The RACE for Children Act provides that, if an adult cancer drug is developed for a specific genetic mutation that is also relevant in pediatric cancer, then that drug must be tested in the appropriate pediatric population. This part of RACE is all about catching the law up with the science. It’s about time, wouldn’t you agree?

  Kira is currently in Washington representing Swifty as a Youth Advocate for Kids v Cancer. Her focus is educating legislators on the urgency in getting the RACE for Children Act passed. You can follow her updates on our Facebook page. www.facebook.com/swiftyfoundation

Orphan Drug Exemption Loophole

Loophole 1:

I am in Washington D.C advocating for Congress to pass the RACE for Children Act. I bet some of you are wondering what is the RACE Act, why is it important and why is the Swifty Foundation supporting it.
The RACE for Children Act is an update of the Pediatric Research Equity Act (PREA) which requires drug companies to develop their drugs not only for adults, but for children as well.
Today I thought I'd share some of the information we share with our congressional representatives and why the RACE Act is so desperately needed. There are two loopholes in PREA that we are addressing with the RACE Act. One of the two loopholes that we're trying to fix in PREA is known as the orphan drug exemption. This exemption allows drug companies to receive a waiver for conducting PREA studies for an orphan drug. An orphan drug is a treatment developed for an orphan disease, which is a condition that affects less than 200,000 people in the United States. It doesn't seem like this should apply to cancer, considering how unfortunately common it is in our society today. However, since cancers are so sub-classified, many very specific cancers are designated as orphan diseases. When they occur in children, drug companies do not have to test them as required by PREA. From our own research, we found that 90% of cancer drugs developed in the past 5 years have been designated as orphan drugs. That right there kicks out 90% of these possibly life-saving drugs from being tested on children. The RACE for Children Act would completely eliminate the orphan drug exemption so that cancer drugs could be studied in pediatric populations. It’s only fair, right?   Kira is currently in Washington representing Swifty as a Youth Advocate for Kids v Cancer. Her focus is educating legislators on the urgency in getting the RACE for Children Act passed. You can follow her updates on our Facebook page. www.facebook.com/swiftyfoundation

Making Michael Proud

  I start every meeting by opening my padfolio (that frankly took way too long to find at Office Max). In it, I have a few talking points scribbled down that I make sure to cover in every conversation I have about RACE. I try not to make my pitch seem too scripted, but I almost always have to glance down at my notes at some point during each meeting. However, there is one part of my spiel that never requires me to break eye contact with the person across from me.  

"The reason I'm here is because my best friend, Michael, was diagnosed with medulloblastoma at the age of 10..."

As I begin to tell Michael's story, I see the immediate change of expression of the staffer I'm meeting with. Sometimes it's a half frown. Other times it's an awkward grimace. No matter what face is made, though, it always makes the atmosphere somewhat uncomfortable.

"...Michael was treated with drugs that were 30-40 years old, which is unfortunately a very common practice when it comes to pediatric cancer..." I usually get a nod after this, suggesting some sort of an understanding of this horrible issue. This seems to create common ground between me and the staffer, so things get a little more comfortable. "...Michael's cancer ended up metastasizing to his spine, and he passed away at the age of 15." Any ounce of comfort shreds away as the staffer anxiously tries to come up with an appropriate response as quickly as possible. I don't blame them; most people are extremely uncomfortable with addressing loss. That being said, I receive my fair share of apologies and awkward hums. I always prepare for these responses so that they don't throw me off in the middle of my meetings. But wow was I thrown off by the response from a woman I met with on Friday.

"Michael is very lucky to have a friend like you. He is definitely so proud of you."

I was completely taken aback. I couldn't verbalize to that woman just how much that meant to me, and I can't find the words to explain it here, either. Hearing those words just made my heart light up, and I think my face followed suit. At the end of the day, I'm just trying to honor the life of the boy that impacted mine so much. I don't do any of this for recognition, but making Michael proud is perhaps the greatest feat I could ever achieve. I just hope that woman was right.