Through my twitter I came across an article in the New York Times about a problem that many mainstraim doctors and patients are faced with.
The article is about doctors bending the rules of clinical trials in order to get patients enrolled in clinical trials for which they would otherwise not qualify.
The article presents a real and very poignant dilemma with which many patients and doctors are faced. As it says in the article, a compromised trial has no value, which may mean that admission of a possibly life saving treatment will be postponed or even denied definitely. But even if the problems do not come to light, it can harm patients because of flawed trial outcomes. So it is imperative that all the rules be applied as strictly as possible. But what about the patients?
Imagine your doctor has just told you that you cannot be cured, that all he can offer is palliative treatments and that you must expect to die in a foreseeable time. What would you do? I think all of us would be prepared to try anything to extend their time with our loved ones as long as possible. So when you hear of a clinical trial in which a new cancer drug is tested, but you are told they won’t let you enrol because you might compromise the trial, this is unspeakably bitter, for patients and their family, but for doctors as well.
No pain and all gain for the quacks
Alternative “healers” are not faced with dilemma’s like this. They do not have to carry out difficult and often very expensive scientific trials to get a drug accepted on the market, for their products are sold as “supplements” only and consequently, they are not burdened by the rigorous ethical rules that apply to real science and medicine. They can make far-reaching claims without having to worry about legal consequences, as long as they make sure the infamous “Quack Miranda Warning” is somewhere on their website. It is easy for them to lie to patients with stories of false hope and empty promises of cure. Not bothered by any ethical qualms, they step in where medicine and science stand with their hands tied by the ropes of their professional ethics.
What can we do?
Mainstream medicine and science are and should be bound by a great number of ethical rules and professional and scientific standards and bending the rules of science is never a good thing in our opinion.
Therefore, in mainstream medicine there is a thing called “Compassionate Use”. Compassionate use refers to the treatment of seriously ill patients with new, unapproved drugs or treatments when no other options are available.
Although compassionate use is also subject to ethical rules and standards, there often are a surprising number of ways to get treatments normally available only in a trial (or offered in one) outside of a trial, and frequently patients are simply not told that they may be able to obtain a treatment outside a trial (also called off protocol or expanded access to investigational drugs). So the first thing you should do is: ask.
You can click on the following links for more information on expanded use and how to obtain treatments:
Rules to Help Patients Gain Access to Investigational Drugs
Resources: Compassionate Use
Terminally-ill cancer patients to be offered ‘last chance’ experimental drugs
Brits Turning To Experimental Cancer Drugs