I made the mistake of opening this email while I was sitting in a restaurant with my two boys. On vacation. For the last weekend of the summer before they both go to school. I should have waited. I should not have opened this email. Because, Mr. President, the anger, disgust, and disappointment that I feel at this moment are beyond words.
I guess on some level I should be thrilled that you took the time to direct someone in your office to draft a standard kiss off email to all us childhood cancer parents. The grammar is correct and the language is very…political. And, hey, I got a message from the White House! But, unfortunately for me and my son and the THOUSANDS of children like him, the message that we got LOUD and CLEAR from you and your administration is that YOU. DON’T. CARE.
To add insult to injury, your message uses the very statistics that we are railing against. Mr. President, the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, well then, I think we need to redefine “progress.” And had YOU, not your staff, taken some TIME to read our petition and really listen to the parents who are pleading with you, you would have known better.
And the icing on the cake… you throw in your Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like my son. And, I am paying quite heavily for the health insurance and medical care that saved his life. However, that is not the point. This was NOT the time nor the place to advance your politics. This was your chance to listen. To be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos.
What is also disheartening to me is that I am sure you already have the pink light bulbs that you need to illuminate your tax payer supported home in October. Because, you know, boobs matter more than kids. I have boobs. Nice ones. I will most likely get breast cancer. There is a link between my son’s diagnosis and my chances of getting diagnosed. And guess what. I would gladly go under the knife and lose them both if it meant that more money would go to the kids.
I think what upsets me most is that you are a parent. Your girls are smart, funny, beautiful, and well cared for. You would do anything for them. So, why not stand up and speak out for them and their friends? That is what we are asking. That you make a statement, that you take a stand.
Mr. President, I am disappointed to the point of tears. Good thing your time in office is almost over. Not only did you lose my respect, but you lost my vote as well.
And, no, I won’t be “staying connected” with you.
Fighting Pediatric Cancer
By Paulette Aniskoff, Deputy Assistant to the President and Director of the Office of Public Engagement
Thank you for your petition and for your ongoing effort to raise awareness about the important issue of pediatric cancer.
President Obama shares your commitment and, although we cannot light the building gold for the month of September, we’re issuing a Presidential Proclamation to help amplify your important cause, as we have in past years to commemorate National Childhood Cancer Awareness Month. And the President has continued to meet with cancer fighters — including 7 year old Jack Hoffman, a brain cancer patient and cancer research advocate.
President Barack Obama greets Jack Hoffman, 7, of Atkinson, Neb., in the Oval Office, April 29, 2013. Hoffman, who is battling pediatric brain cancer, gained national attention after he ran for a 69-yard touchdown during a Nebraska Cornhuskers spring football game. Hoffman holds a football that the President signed for him. (Official White House Photo by Pete Souza)
But we think it’s not good enough to simply make more people aware of the issue: The Obama Administration is committed to continued support for outstanding pediatric cancer research. Because this issue is incredibly important — too many children and their families face the devastating effects of cancer. And as you point out, it remains the leading cause of death by disease for American children under the age of 15.
That’s why the National Cancer Institute continues to support long-term research efforts to help us better understand and treat pediatric cancer. You can learn more about our scientific efforts here.
We are making progress: Success in treating pediatric cancers has led to large numbers of long-term pediatric cancer survivors with long life expectancies.
In addition, the Affordable Care Act offers a number of important benefits for children fighting cancer. For example, eliminating lifetime caps on care means insurance companies can’t set a dollar limit on what they spend on a child’s care. And insurance companies can no longer deny families coverage because their child has a pre-existing condition like cancer. And the law will help millions of Americans, including children, get health insurance so if an accident or illness like cancer happens, they can get the care they need and deserve and are protected from high, unexpected costs. You can learn more about these benefits and more at HealthCare.gov.
So along with the proclamation, we’re also committed to supporting families battling cancer through the Affordable Care Act, and funding pediatric cancer research to find more effective, safer treatments.
Tell us what you think about this response and We the People.
Presidential Proclamation: National Childhood Cancer Awareness Month, 2013
Every September, America renews our commitment to curing childhood cancer and offers our support to the brave young people who are fighting this disease. Thousands are diagnosed with pediatric cancer each year, and it remains the leading cause of death by disease for American children under 15. For those children and their families, and in memory of every young person lost to cancer, we unite behind improved treatment, advanced research, and brighter futures for young people everywhere.
Over the past few decades, we have made great strides in the fight against pediatric cancer. Thanks to significant advances in treatment over the last 30 years, the combined 5-year survival rate for children with cancer increased by more than 20 percentage points. Today, a substantial proportion of children diagnosed with cancer can anticipate a time when their illness will be in long-term remission or cured altogether.
My Administration is dedicated to carrying this progress forward. We are funding extensive research into the causes of childhood cancer and its safest and most effective treatments. We also remain committed to easing financial burdens on families supporting a loved one with cancer. Under the Affordable Care Act, insurance companies can no longer deny coverage to children with pre-existing conditions or set lifetime caps on essential health benefits. As of January 2014, insurers will be prohibited from dropping coverage for patients who choose to participate in a clinical trial, including clinical trials that treat childhood cancer.
All children deserve the chance to dream, discover, and realize their full potential. This month, we extend our support to young people fighting for that opportunity, and we recognize all who commit themselves to advancing the journey toward a cancer-free world.
NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Childhood Cancer Awareness Month. I encourage all Americans to join me in reaffirming our commitment to fighting childhood cancer.
IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.
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This is the best response I have read. You put my very thoughts into words. On a day we found another side effect of these “advances” in pediatric cancer care, in my son, I got this email. 15 years after surviving cancer, we are still finding side effects of treatment. Shame on you, president. Shame.
Totally Disgust!!!! And he is a “Father”!!!!
Don’t just let folks here know what you think, call the White House 202-456-1111 Monday to Friday 9-5 or email them via this link! Gold in September or no color any month of the year. Period. A proclamation without even a simple symbolic gesture means nothing. My bet is that this was all badly handled by the Health Care office which is why we have to make enough noise to get this issue noticed by White House staffers with more clout!
How disgusting of his administration!!! I wonder if the letter ever made it across his desk!!!! I guess children aren’t the future in their eyes!!! How disheartening!!! 😦 He lost my respect & vote also!!
I was also very upset when I read the same email. Ugh…I bet if one of his precious little angels got cancer the White House would be Gold 365 days a year. But so far he is one of the lucky parents that has not had to hear the words “Your Child Has CANCER”. I pray he never does because NO child deserves to go thru what my daughter and my family had to go thru.
I can’t believe he added all that health care cr.. in at the end either. Ugh like we all wanted to read that. I stopped about 2 sentences in and deleted the email. Disgraceful for him to use our plea for his personal agenda.
Why can’t you light up OUR White House in honor of OUR children, of All children!
The kids that are diagnosed next year are healthy children this year. They could be
YOUR healthy children this year! Light up OUR White House!
Dear Paulette Aniskoff,
Thank you for your support, however, may I suggest that to improve the fight against childhood cancer, then the President could identify either within his NIH budget or direct NIH to invest more than 4% of NIH research budget into research on childhood cancer. It may be also an excellent investment and a new approach to finding a cure for cancer overall!
Dr. Tibor Schonfeld
Grandfather of Alexis Agin, who lost the fight against cancer at 2 weeks before her 5th birthday.
Vienna, Va 22180