Seems like in many cases, just trying many things on many tissues is whats needed to find solutions. I know there are groups like Opentrons and there are groups out there working on snythetic tissue generation, but I wonder is the bottle neck tissue availability, researcher examination time or studying long term effects. Seems like we need to open all these bottle necks up to really iterate.
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.
I 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.
Yes 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.
Terribly 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.
Relay 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.
What 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.
Only 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.
Well 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.
Are 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.
Well, that depends on how the non-charity money is used. If that 40 cents on dollar is used to effectively raise another 3 dollars, then it is still worth it. In other words, would you still feel OK with contributing to an advertising campaign that ends up getting other people to contribute to a charity fund that they normally wouldn't?
Just 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.
It likely wasn't picked up by Big Pharma because the research was for a disease that affects a couple hundred people in the states. There's no money in that disease, but if the research had been in cardiovascular disease, Big Pharma would have been all over it (which it looks like is now the case).
Kid A could be the control group? It's done for a lot of other important research, and they could stop the trial and give Kid A the drug once they prove it makes a difference.
I see your point. And I don't think it's quite as horrible, and might actually be somewhat more responsible to only give the drug to one kid to start with.
Assuming, of course, the kids aren't at risk of death any time soon (they seem fairly healthy in that picture), and the results could be measured fairly readily.
This does sound promising. The compound (2-Hydroxypropyl-beta-cyclodextrin, or CD) was approved by the FDA in 2009, but only for compassionate use in children for treating Niemann-Pick disease intravenously (IV). Clinical trials are ongoing for non-compassionate access (again, only for treating Niemann-Pick).
However intramuscular (IM) use for treatment of atherosclerosis in the general population probably will have to go through the entire Phase I-II-III clinical test cycle before CD will become available to that end. That's likely to take another 5-10 years, since such trials have not yet begun. I can't guess whether the Niemann-Pick trials might expedite acceptance of CD for a secondary target using a different delivery method (IM vs IV). Maybe.
https://news.ycombinator.com/item?id=11450451
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