What can we do to make the necessary changes for our children fighting cancer. We know 4% IS NOT enough! I write letters and emails and they go something like the letter below. Many talk but WE need to know how to take ACTION. I have researched and I have to admit I stole this very doable idea from several reliable sources. It seems likely that it can work. Baby steps to get to the bigger CURE. I believe if we can cure cancer in our children we will also cure cancer in adults. Childhood cancer is not the same as adult cancer and this is a fact people need to understand. We know what causes many adult cancers. Many times the cause of adult cancer may be environmental and sometimes they are preventable. This is not the case for childhood cancer. At the time most childhood cancers are diagnosed 80% of the time it has already spread; this is unacceptable. It is time for things to change. I hope you will join in the fight with me. Feel free to change the following letter to best fit your needs and send to your local legislators. Let's spark a change!
I am a parent of a child in Heaven. I know this isn't necessarily unusual, many people are like me. Many people have children no longer on this earth and they also believe their children should still be here just like me. But what is different is the fact that I believe we were cheated by our government, our lawmakers and our medical institutions. I believe if our children's lives were given importance and made a priority then maybe my beautiful Mary Elizabeth would still be here alive today.
These are the facts: The National Cancer Institute only allocates approximately a mere 4% of its entire federal budget to children. That includes all types of childhood cancers into that budget. The most common childhood cancers will get the most funding, therefore the "rare" types such as my 12 year old daughter Mary had (AML) gets almost 0% of the funding included in that budget. This even though approximately 500 children a year are diagnosed with her type of cancer in the U.S. every year. It is left up to private organizations to raise money to fund research studies for these children. Some types of childhood cancers such as DIPG still have an almost 0% cure rate at diagnosis. This is absolutely unacceptable.
What I would like to ask from you is this, I would like to ask you to lobby for more funding for our children from the NCI. Just 1% more. 1% more can do so much. It is just a start but it is also a beginning to bring about needed change. This amount would open up approximately $50 million dollars a year gain from the NCI budget. That opens up that much more opportunity for investigators to gain funding for new trials and research. 1% is probably not enough but it is a beginning and you have to start somewhere. Any little bit helps and makes a difference and saves many lives.
Where is the money going to come from? I believe it can come from removing a small percentage across the board along the lines of each cancer type funded. This would add up to a single percent in a short amount of time. I am aware that other cancer lobbyist will be resistant to change but I would like to argue this fact-how could taking a small amount of money from your much larger budget in order to help children dying of cancer be negative to your cause? I don't believe the NCI budget would not be dramatically altered for any single sub-disease by changing the proportions in such a minimal manner?
Now, what do we do with the money? We open up more childhood cancer specific research grants across a broad collaborative of researchers. The NCI could increase the projects that they currently fund on their own campus while also encouraging outside researchers to apply for additional funding for projects that they are currently unable to execute due to lack of support. This can in turn benefit those "rare" cancers like my Mary had that desperately need more funding and progress.
When you hear there is a cure relate of "80%" for childhood cancer this is extremely flawed for many reasons and doesn't take into account all the many other statistics that come into play. Such as how little progress has been made in childhood cancer in our lifetime, the toxicity of cancer treatments, some cancers still having a 0% cure rate. 75% of childhood cancer survivors have significant medical complications from treatment, and an only 5 year survival being considered as cured. Children are our future and should be treated at such. They deserve much better.
Sincerely,
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