Washington Lip Service

WashingtonLipService

Editor’s Note: Since this article was written, the Gabriella Miller Kid’s First Act was passed by the U.S. Senate by unanimous consent vote on March 11, 2014. The President signed the bill into law on April 3, 2014. So far, it has not been appropriated. It will be a shame if our legislators do not honor their promise and fail to put this in the budget.  

Dear Senators Toomey and Casey:

It is a rare occasion for me to be short and to the point, so when I wrote to you about the House-passed Gabriella Miller Kids First Research Act, it took every ounce of restraint to not go on and on and on about the problems facing children with cancer.  To recap, I wrote a short and to the point e-mail to each of you on December 13, as highlighted below.

Dear Senator, I sure hope that the media has it wrong, but I am hearing that the Senate plans to snub HR 2019 Gabriella Miller Kids First Research Act, which would redirect taxpayer convention funding to pediatric research.  I am asking that you collaborate with other Senators and  do everything and anything in your power to ensure that the proposed legislation is discussed, voted on, and passed.  Kids with serious conditions like cancer deserve to be a research priority in this country instead of being relegated toward the bottom, as they have been (with an estimated 4% of the NCI funding going toward pediatric cancers).  Please give this your immediate attention, regardless of other priorities.  I have not had to personally deal with childhood cancer, as my daughters have been healthy to date (knock on wood), but this legislation is of utmost importance to me.  I hope you share my sentiments. Thank you!
Laurie
Laurie Orloski, PharmD
 

You both came through on your promise for a guaranteed written reply for me, your constituent.  Your timing (first full week of January) was not horrible considering the holiday but still could have been quicker, considering that you both sent me back a canned blah, blah, blah response that failed to address my inquiry or merely acknowledge the Gabriella Miller Kids First Research Act.

SenatorToomyThe content of your “letters” themselves speak volumes, so I don’t have too much to say and will be relatively short and to the point again.  Just to be clear, this is where we all stand right now, per my perspective:  I wrote to you about a specific piece of proposed legislation to benefit children that is in jeopardy of never even making it to the Senate floor—in which $126 million dollars of taxpayer money slated to support political conventions (including but not limited to meals, goodie bags, and balloons) would be redirected to support research for childhood cancer and other poorly understood and difficult-to-treat conditions like autism and Fragile X—and you wrote me back with generic prose in which you plugged your own SenatorCaseypolitically motivated messages that are not relevant to the matter of importance to me.  Yes, you insulted my intelligence by thinking that you could pass off a form letter/template/canned reply for a tailored response letter, but luckily for me I was not born yesterday.  Far more importantly, you overtly insulted children with serious medical conditions and their families by allowing a response letter to go out (with your signature attached to it) that failed to mention not only the Gabriella Miller Kids First Research Act but also fundamental words, for instance, children, kids, pediatric, cancer, or autism.  I am so taken back by that–no mention at all of “children” or “pediatrics” in a reply to an inquiry about, of all things, the Gabriella Miller Kids First Research Act.  Senator Casey, I am particularly surprised that in your laundry list of accomplishments, there was no mention of the Creating Hope Act of 2011, why not?

I don’t need to ask you where you stand on the bill, as I think it is pretty obvious that you are opting to sit back and do nothing.  I would like to ask, however, if you personally read my e-mail and thought about it at all, or if one of your staffers or an intern took the lead in pulling the template letter for “healthcare” and adding my name to it.  Quite frankly, I’m not sure what is worse: if my e-mail wasn’t deemed important enough to reach your desk, or if it did reach your desk and you made the decision to dance around the subject 447915420_640of the Gabriella Miller Kids First Research Act while taking the opportunity to instead deliver political messages to one of your constituents.  Maybe I was too short and to the point, maybe I needed to explain to you what the Gabriella Miller Kids First Research Act is and why, although not an end-all-be-all solution, it is such an important step forward for children in this country.  Regardless, please abandon the blah, blah, blah and rah, rah, rah letters and do better the next time someone contacts you about something they are passionate about.

I am not trying to be dramatic or snarky here, but as a life-long Pennsylvania resident (having been born, raised, and educated in the Commonwealth), you really have made me want to pick up and move elsewhere.  I have to wonder though; would the grass be any greener across state lines?  Unfortunately, I am thinking no, given that childhood cancer has been and continues to be a low priority for funding on a national level–so low of a priority that US Senators like you would, in writing, pretend like it doesn’t exist at all.  Kids with serious medical conditions for which current treatment is lacking or inadequate deserve so much better, needless to say, and the Gabriella Miller Kids First Research Act is a means of doing just that.  If you agree, you need to speak up and give this bill a chance.

Sincerely disappointed,

Laurie Orloski

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This entry was posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized and tagged , , , , , , , , . Bookmark the permalink.

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