My thoughts about the American Cancer Society
So this is written out of frustration and sadness. These are MY thoughts. If my view offends you, then I am sorry….I am speaking as an advocate for ALL our children. I DO CARE about every person affected by cancer, but our kids have no voice and sadly not many adults choose to speak on their behalf.
Recently there has been a lot of talk regarding the American Cancer Society and it’s lack of support of Childhood Cancer. There are days when I get angry and days when I think I should just stay out of this back and forth discussion with ACS which only leaves me with a nasty headache. I then tell myself I would be letting our kids down if I did not give my opinion and did not fight on their behalf.
So here are some of my reasons for being upset:
1) Relay For Life is a community event that raises money for ACS. Three years ago we raised $20,000 for Team Ishani. Later we realized that just 1% of that went towards childhood cancer (all types). It made me sick. People donated their money in honor of my daughter and in support of childhood cancer and we had no say in where that money went. We asked if that money could go towards childhood cancer and we were told “NO”.
2) If anyone wants to donate specifically for childhood cancer, ovarian cancer, pancreatic cancer and many other cancers, they cannot. The only cancer types that you can restrict your donations to are, Breast, Colon, Lung, Prostate OR “research” for which they will determine where the money can be used (i.e it could all be used for any cancer they choose). So we do not get a choice, even though we raise the money. Don’t get me wrong…….I will NEVER give ACS any money for childhood cancer…..I will direct it to a CC specific organization such as CureSearch, Alex’s lemonade Stand or St Baldricks. But I know many people who are unaware of this and with good intentions make donations to ACS. They do not know where their money is going. I know of many adults who have themselves fought cancer and still choose to donate to childhood cancer, because they cannot imagine ever having to watch their child fight cancer. I think ACS is afraid that if they have a donation tab for Childhood Cancer many donors would choose to donate to that cause. We have asked ACS many times why they have not got a donation tab for CC and their response always is “we have sent your request in for review”!
3) ACS considers childhood cancer as “exceedingly rare”. They do not think 12,500 kids being diagnosed each year and 300 kids dying each year and CC being the #1 killerdisease of children in the U.S being compelling enough to fight for them. However they have no problem in using our bald kid’s pictures or their stories to garner sympathy and money from their potential donors.
4) ACS is never consistent with their responses when asked about CC. They get very defensive and will never give any links to the studies they say they have funded.
5) In a recent conversation with a ACS employee, she asked me “how much do you think we should give for CC?”. She continued to say “when YOUR child is sick, no amount of money will be enough”. She forgets that we are NOT fighting for our kid…we are fighting for yours.
6) Many supporters of ACS do not want to hear what I have to say. Some probably think I do not care about adults with cancer. Actually I care very much. I have lost many friends and family to cancer. What they do not realize is that while they say “the next dollar may find the cure”, they forget that only 15% of all money raised goes towards all research. The next dollar may be going to fund the CEO’s >1 million dollar salary! Most of these supporters have children. Do they not care about the fact that their kid could be diagnosed with cancer. Do they not realize that if they do not take a stand now it might be too late. If you and your child had cancer and there was enough money to find a Cure for one of you, would you choose yourself over your child? Recently, the Susan.G. Komen Foundation reversed a controversial decision due to the outcry of people around the country. Do these same people not want to also speak up for our children who do NOT have a voice? Are we as adults that selfish?
7) The ACS states “Out of a total of $105 million given in research grants in FY2011, about 8% of our FY 2011 funding was related to childhood cancer”. They say this in response to our comment about less than 1% going to childhood cancer. Well guess what……8% of 105 million in research of 1 billion earned per year IS less than 1% !! Do they think I am stupid?
8) ACS claims that they are the “sponsor of more birthdays”. I don’t know about you, but when I think of birthdays I think of children. Think of how many more birthdays we could have if there was better treatments for childhood cancer.
9) A famous quote you hear from ACS and their supporters, is that cancer research helps ALL cancers. This is SO untrue when it comes to kids. Children get cancers that are different to adult cancers. There are no known risk factors. You cannot just treat them like they are tiny adults. And if they still do not believe me, then I challenge them to research childhood cancers and use their data on adult patients!
So, for those of you who actually read my note…..
I will NEVER support ACS until they show more concern for our children and show that by increasing funding and awareness. I will not support Relay For Life nor be a part of it, until the children we relay in honor/memory of are given more respect and until those supporting it demand answers from ACS regarding their lack of support of our children. I will continue to educate people about ACS and their poor donor stewardship.
For those of you who think I am selfish by asking for more funding for children….
This will NOT help MY child. This will help those yet to be diagnosed. I am fighting forYOUR child because I saw what cancer did to my child and our family. When my daughter relapsed we were told there was no treatment protocol for relapsed Rhabdomyosarcoma. We were one of the lucky ones. I still have my child. Many do not. I want every child diagnosed with cancer to be given the “hope” of a Cure. While advances have been made in some childhood cancers, many types of childhood cancers still have extremely poor outcomes. There have been only 2 childhood cancer specific drugs manufactured in the past 2 decades. Our kids are given adult drugs which gives them severe side effects both short and long term. When we talk about childhood cancer, we lump them all together, unlike adult cancers which are talked about individually. ACS gives less than 1% to ALL childhood cancer research.
Our children have no voice. They cannot vote. But they do have dreams. If you don’t step up and speak up for them, if you don’t challenge the ACS and it’s intentions, then you have put yourself first and your kids last. They deserve more. I will fight for them. WILL YOU?
(Mother to a 9 yr old who has fought Rhabdomyosarcoma twice since the age of 3)