Many Cancer fighting families and the Physicians who treat them – think that last year our Nation spent $122 million, let’s say – on the research of one Pediatric (kids) cancer, specifically, Non-Hodgkin’s Lymphoma, and $631 million on just one adult cancer (breast), because kids are not old enough to vote and therefore politicians do not have to answer to kids. I personally have heard these words spoken on too many occasions over the last 3 years. This is complete rubbish. The cancer kid’s parents vote. Their older-than-18 extended families and biggest cheerleaders – vote. But we have a history of asking politicians the wrong questions. What IS on their platform? I made a promise to a cheeky 7 year old, from that day forward – I would know these things, and whether or not my representatives, congressional members and/or anyone I vote for ever – has childhood cancer research on their platform. If it is not even on their radar, they are not on mine. To be on mine they will need to so some research and see what we can do to right this injustice. No, I do not mean lip service. I like written plans. I’ll need to see those too before you get my vote.
I challenge local, state and federal legislators to discover why “everyone” says it is big Pharma’s fault that there has only been one new pediatric drug released in over 20 years on the market. “Everyone” says that big Pharma does not develop/manufacture new drugs for kids because they will not make money off pediatric drugs. WRONG! First, drug companies have very savvy business and marketing development leaders – and second – this subsection of consumers has 46 new customers every single day. The parents of these kids and those who love them most (and even complete strangers) will find the funds necessary to treat/cure- if the drugs that were needed – were out there. We’ve raised hundreds of thousands of dollars for local kids to get to watered down adult treatment centers across the nation – and sometimes out of the country – because it’s the best option we have. Last – the drug companies are already making money off kids with cancer, but they are not earning a good reputation when their drugs are watered down to a kid dose – have horrific side effects and the kid still dies. I have spoken directly to – and have had incredible conversations with the leaders in “big Pharma”. They have so many amazing potential kid-friendly drugs on the cusp – but they have difficulty getting governmental approval relating to the research/outcome protocols for Pediatric drugs. Now why would our government do that? Because they only want to fund/grant programs that have good outcomes – and they are doing a bang-up job with that across the board aren’t they? The governmental guidelines are too stringent and they only chose the studies with a very high chance of a great outcome (read propaganda garbage). The only drugs to survive this review are made for adults. It’s just not the American way – to take the easy road. It doesn’t make me feel better about myself and our government at the end of the day – and it shouldn’t you either.
I have worked for over two decades in healthcare and I have a special place in my heart for women’s healthcare. My true passion has always been in this field and I have been blown away by the advances. 21 years ago (and even more recent than that) – a breast cancer diagnosis delivered was almost a death sentence. Today, many women work throughout their entire treatment plan without missing much time from work. Am I angry about that? NO. Please do not misunderstand the semantics of my words. I rejoice in the news that yet another woman has beat this monster. I have two very good friends who have breast cancer right now – and whom I love dearly. I have spoken to both of them on this very subject. They themselves – cannot believe the treatment options they have compared to the non-existing options for children. I do not want the pink ribbon to go away (unless we abolish breast cancer) – but it should not be that hard to equally see the GOLD ribbon about. Pink is big in October, and every other month. Awareness works – and the pink ribbon campaign has proven this. GOLD needs to work just the same. September is THEIR month. Let’s see some GOLD. Own a business? Cover it in GOLD this September. Allow Clinton’s Club (www.clintonsclub.org) to place an awareness poster in your storefront – or host an event. You do not need money to do this. Donate your social media presence – even an hour a day can make a big difference. Think you can’t make a difference because you have no money? Wrong. Go to Google, select Google images. In the Search bar type “Clinton’s club”. As of this morning, the first 5 images you will find are either sweet Clinton himself – or a highly viewed photo tagged to Clinton. I am SO SORRY Bill and Hilary, “I have never had”…intentions to squeeze you off this page. I did partake in ousting Michelle Obama as the #1 trending hash tag for Nashville, TN the week we squeezed her to #2. It was a small week – in this country we call it – re-election week, in a decade where social media – clearly won an election. I believe it went something like this #pray4tay.
One last note to local community leaders, business owners and legislators perhaps you have been fortunate enough to never personally experience childhood cancer. I pray you never do. But if you are one that clicks fast over another bald kids photo or social media awareness page, stop it. We are not looking for nor asking for empathy. We are so sorry that it makes you sad, or maybe even brings you to tears. We have enough sympathy – we do not need that. We want you to know that ignoring this fact IS impacting the economic growth and development of our community. I’ll use Rutherford County, TN as an example. I personally know NINE local families who have health insurance and who have to spend $40k or more per year out-of-pocket to obtain necessary care for their kids. This does not count counseling for siblings, care for siblings, etc. It doesn’t affect us right? Well, one parent works for Nissan and continues to miss a lot of work to travel out of the local area for Neuroblastoma care (certain this impacts the production line); one works in healthcare herself – and the staff at her work missed an entire day to attend the funeral of her 7-year old. (only 40 patients didn’t receive their scheduled healthcare in RuCo that day, in a critical field that can have many social consequences); one owns her own business that was once thriving and is now nearly closed; ALL of them have gone from a two family income to one, or a single parent who once worked full-time to not working just so one parent can be with the child 24/7. Many have filed bankruptcy. Almost all – have or will be filing for divorce. Our children will most likely have a classmate during their primary school years who has cancer. If your child or grandchild comes home talking about a “monkey in their chair” the monkey represents their classmate who is out of school because of cancer. They will ask you for a few extra dollars to buy a plastic band with their classmates name on it to wear. Some schools ban these bands as not being a violation of dress code. So – yes, if affects us all. Emotionally, Cognitively, Socially, Economically. So, if you ask me how concerned I am about a new conference center and it’s ability for RuCo to compete in an economic arena – I might discuss this with you after you convince me that you have a plan that will really make a difference in the lives of the people who live and work here.
I hope you have your thinking caps on. I hope you do more than just think. Imagine, if tomorrow – a terrorist (foreign or home-grown) walked into Siegel elementary and killed 7 innocent children sitting in their classroom. We’d see action. But that’s not quite the right analogy to use. First, we’d have to gather up all of those who love these 7 children – and force them to watch them be tortured over the next year to several – knowing they will die anyhow. What would we do about that? No, this is not shock marketing, this is the truth. A quick visit to the Pediatric Oncology floor at Vanderbilt today – will prove, The floor is full and there are two kids who’s healthcare is at risk as they “wait” in a germ incubator we call the ER. They are waiting because the rooms are full. They shouldn’t have to wait more than 24 hours. Adult Oncology floor has beds immediately available.
Very powerful and eye opening. Thank you for helping to educate the public…myself included.