"Husband and father of 3, age 31, high grade spindle cell sarcoma, stage 4 with mets- help! nuclearcouple@hotmail.com or find me (spouse) on fb, Heather Cimino in Fort Myers, Fl, willing to travel anywhere, just save my husband!"
"my wife has tumor that are killing her will you hurry up and get this sorted - is there anyway one can volunteer for a trial tim.parry@xtra.co.nz"
There has got to be a way to address this need.
Yes, there is. Fight for the right of each individual to follow his best judgement in regard to all matters pertaining to his own life. (If someone doesn't know enough to make the call, he knows enough to choose a physician who can.)
Right now, timely experimental treatments are basically outlawed. What good is it to say that there's an FDA procedure to get around the controls if you're treated too late? What right does anyone have to deprive anyone else of what might be their only shot at life?
It can be frustrating, but the rules weren't created in some blind bureaucratic power-grab. They're responses to actual problems that existed in their absence. They aren't without their downsides, but they remain better than the alternative on balance.
I'm sure you mean well, but this type of thinking really bothers me.
For example, many of us here on HN, possess the critical reasoning skills to determine snake oil from a credible research lab. Given that there are almost no practicing oncologists present, we'd all likely qualify as lay people.
However the central issue is a medical doctor is not even qualified enough to choose, due to malpractice liability. On top of that even a specialist can find difficulty prescribing experimental treatment lawfully, unless it's part of an FDA trial. This is in addition to the incentives drug companies push. [1]
I speak from first hand experience dealing with Psoriatic Arthritis and establishment CYA (cover your ass) thinking. After spending $1000+ per month on Anti-TNF blockers [2], I'm doing just fine on lifestyle changes and have seen no disease progression after 3 years of being off meds. I wouldn't bother mentioning it if it weren't for the thousands of credible patient stories that point to fixing what we eat as a means to being healthy. Yet the paradigm for the last 30 years is one of treatment, not prevention.
Guess which makes more money for Pfizer, GSK etc? Hint: it's not vaccines (prevention). Chronic treatment (autoimmune, psych drugs, cvd etc) are dominating the top 10 sales charts. [3]
I would feel incredibly angry and upset if myself or someone close to me, were in a position to try an experimental cancer treatment, but were unable to, because of regulatory snakes and ladders.
I'm not saying the FDA is useless or provides no public benefit, but I would question the wisdom behind entrusting authority of one's life, to a single decision making body.
[1] http://www.nytimes.com/2011/11/25/us/payments-to-doctors-by-...
[2] http://en.wikipedia.org/wiki/Etanercept
[3] http://en.wikipedia.org/wiki/List_of_largest_selling_pharmac...
The gullible are already getting snake-oil in the form of herbal remedies and homeopathy.
That's not a credible claim. Tell that to either of the two people that left those comments.
Sure, there's risks inherent with experimental drugs, but these people are dying or losing loved ones. They don't give a damn, and none of us has any right to stop them from taking those risks with their own persons. Their bodies are their own, they are not yours.
And frankly, the snake-oil salesman claim strikes me as little more than FUD. People can get recommendations from multiple MDs before making up their minds.
So because some people will be duped, let's doom everyone to death.
Unfortunately that is demonstrably not the case. There are many qualified, experienced, doctors who are happy to peddle nonsense. Even limiting yourself to conventional medicine it's hard to tell the effective medication from the less effective medication.
> What right does anyone have to deprive anyone else of what might be their only shot at life?
What right does anyone have to manipulate desperate dying people out of vast amounts of money on unregulated, useless, gambling?
I'd agree if you're suggesting that people should be able to volunteer for trials - but double blinding means they may not be getting the experimental treatment.
This already happens. I don't really see how allowing dying people to access experimental procedures is any worse than allowing dying people to pay for crystals, and "charged" water.
Yes, it sucks for the people who won't survive until the drug reaches the market, but the overall outcome for society is better.
Also, at the end of the day, taxpayer money is used to pay for most EOL care. The taxpayers have a vested interest in not exposing dying people to expensive and unproven treatments which could make their conditions even worse.
Morally speaking, the judgement of a patient (and the physician he has chosen) must not be impeded even for an instant. The FDA renders individual judgement on these matters irrelevant, and the result is often death and slowed medical progress.
Edit: perhaps a set of crowd-sourced, extremely explicit instructions about how to manufacture, purify, and test such antibodies would be a start. With such a set of instructions, they might be able to find experts to help them under the table.
Cancer research is too important to use misleading, link bait headlines to attract attention.
Nothing more useful to add to this comment. Sorry
This is the original article: http://www.pnas.org/content/109/17/6662
You can actually get the antibody yourself, FTA: "The anti-hCD47 (B6H12) hybridoma was obtained from the ATCC" [http://www.lgcstandards-atcc.org/Products/All/HB-9771.aspx]
Purifying it is easy, if you have a lab.
However... you can't use that antibody directly in humans, since it is a mouse antibody, which the human immune system will recognize as foreign. So, even if this treatment were to work, it is necessary is to first "humanize" the antibody so it won't be rejected, and then you can see what effect you get in a clinical trial. I imagine this is what the $20mil funding is for.
You can find clinical trials for new drugs here:
May this be another 'lost' case, appeared once and never again?
That's great -- does anyone know if any other cells in the body express CD47? Especially ones that can't be replaced so easily?
That's why fighting it is so difficult. I highly doubt there ever can be one chemical substance that reliably fights all sorts of cancer.
And you can't really cure cancer anyway.
Our only hope at this point is genetic engineering.
See http://www.lef.org/magazine/mag2010/jul2010_Life-Extension-F...
Also, I believe there is an organization that helps cancer victims by arranging travels outside of USA for innovative treatments, LEF can refer you to them.
