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Since that was yesterday's HN I want to just say that as a parent who's son died of cancer at 12 that this shows how little resources in time and money is spent
by baldfat 11y ago
Since that was yesterday's HN I want to just say that as a parent who's son died of cancer at 12 that this shows how little resources in time and money is spent on children with "Small populations" of patients.
This includes every single childhood cancer out there. The kids get 4% of the federal research money and $0.01 from every dollar from American Cancer Society (Light the Night) (Notice they don't have any pictures of children for 4 years now due to parents being so mad at being the poster child that got the least.
Childhood cancers are different then adult cancers and adult cancer treatments don't work for the VAST majority of the kids due to their whole body is growing as fast as the cancer. Adult treatments kills kids. So we now have 1 new drug int he past 20+ years! Ok enough of a rant.
- 6stringmerc 11y agoWhat a heart-breaking introduction to the world of cancer research. I personally know an immensely bright person working on a vicious type of childhood sarcoma cancer, and his work is innovative and may, in time, lead to a highly specific form of treating cancer that won't have the same long-term side effects as the "one size fits all" type of chemo approach. It's important work, and he has received both private and public funding for his lab because he's making progress. It's slow. One thing I have learned though, is that once a parent discovers their child has a diagnosis of that type of cancer, they go online and look it up. Eventually they find his name if they look long enough. Some of those parents write pleading, begging letters to him looking for some kind of treatment - anything. Other than giving them a name for the best clinic in the US in his opinion, there is nothing he can do to help but continue his work. Such letters do appear to take a toll on him, emotionally, because he does care. As a person with a rare, permanent genetic condition myself, I have come to accept and live peacably with the outlook that people, as a group, simply do not find ways to care about other people's problems with a sliver of intensity that they do once one of those problems becomes their problem. It's just the way our species seems to be wired for now.
- cmdrfred 11y agoOnly about 60%[0] of the American Cancer Society revenue goes to charity to begin with so that is to be expected. Most of the cancer charities I've seen (Susan G Komen et all) are rather bad. [0] http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=6495 http://www.charitynavigator.org/index.cfm?bay=search.summary...
- baldfat 11y agoWell the issue specifically is Childhood Cancer Research funding. This link will state a good pissed off parents stance on ACS. They raised funds for their daughter and asked people to donate to ACS instead of flowers. Then they realized where their money was going after ACS pulled funding of summer camps across the nation with out any warning. http://curechildhoodcancer.ning.com/profiles/blogs/my-thoughts-about-the-american-cancer-society http://curechildhoodcancer.ning.com/profiles/blogs/my-though...
- melling 11y agook, can someone explain the best places to donate? I've donated to Fred Hutch in the past: http://www.fredhutch.org/en.html http://www.fredhutch.org/en.html Who's effective with the money and doing great research?
- vonmoltke 11y agoAre you reading that wrong? That site says 59.6% of the ACS's expenses go to "Program Expenses", which is what Charity Navigator calls the charity's core mission programs.
- cmdrfred 11y agoSorry flipped it around in my wording, I'll fix it.
- SeanDav 11y agoI never knew that kids cancers cannot be treated in the same way as adult cancers. I just assumed that the advances in cancer treatment applied to all ages. This message needs to get out. Truly sorry for your loss.
- mason240 11y agoI'm sure oncologists are aware of the difference.
- baldfat 11y agoYes but the political difference and money raised for cancer is not spent enough on cancer research. I love St. Baldrick's (They funded the new drug for Childhood Cancer that increases it's effectiveness over 40% (think cancer killed) with less side effects) and also Pediatric Cancer Research Foundation. The money goes to research to help the children of the future. I was surrounded by support and still receive support from my local community but little money goes to research funds and most money goes to help the family and children financially and emotionally (Think "Dream Come True" LOVE THEM and Ronald McDonald House LOVE LOVE THEM) We need both to be funded and more from the Government Research Grants. If we find a treatment for kids it usually will work even better on adults and with less side-effects since children's bodies are more delicate.
- baldfat 11y agoI should also say that my son's oncologists shaves his head every year for St. Baldrick's local fund raiser.
- paulirwin 11y agoTerribly sorry for your loss. My younger brother passed away due to leukemia and I feel your frustration. I do want to give some credit to Light the Night though. It is run by Leukemia & Lymphoma Society, not ACS. LLS has an 84% score on Charity Navigator, and while that score could be better, they do spend 73% of their expenses on the programs they exist to deliver, which is very good.
- baldfat 11y agoRelay for LIFE!!!! UGH! Sorry I was thinking I might have made a mistake and was going to look it up but didn't :(. We had several friends who passed away from stupid leukemia.
- dbbolton 11y agoJust wanted to add my perspective as a US medical student-- First I would like to say that I'm sorry for your loss, and please don't take my comment as defending or justifying our current research system. But the explanation as to why there is so little medical research for children has to do in part with the federal laws regarding Protection of Human Research Participants (PHRP), specifically the "vulnerable populations" subsections, which define additional protections that are required to perform research on such groups (for children, it is Subpart D). I won't go into detail, but the gist is that we err far on the side of caution. Whether that's for the best is another matter. There's a huge amount of red tape/obstacles for performing clinical trials on competent adults, and much more if your study includes children or other "vulnerable populations". There is a whole list of exclusion criteria that you have to get past before your study can be approved and you can start seeking funding (some of which may be difficult to prove or justify to the IRB), you need parental permission and the child's assent (which also may be difficult to prove, and doubles your chances of losing a subject), risk assessment and the associate requirements/protections are handled differently, and so on. Here are some resources if you want more details: http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html#subpartd http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html#... http://grants.nih.gov/grants/guide/notice-files/not98-024.html http://grants.nih.gov/grants/guide/notice-files/not98-024.ht...