One is driven to wonder why, as we spend billions of dollars on healthcare, often a patient's best alternative is to do their own (free) research. When my uncle was diagnosed with brain cancer, my grandfather spent hundreds of hours reading medical journals and looking for as many low-chance, high-risk studies and treatment plans as possible. He turned up many options my uncle's family had no idea about. That should not have been his job.Sonia Olea Coontz, of Long Beach, California, was one of those patients. Now 36, Coontz had a stroke in May 2011. She enrolled in the Stanford trial after finding out about it during an online search.
I'm going to bring this issue up at my next research meeting, because there are tons of studies that are starving for patients, even when the patient population is large because people just don't know about them. To hear this again, from the patient/family side of things (As opposed to other coordinators bitching about low enrollment) is disheartening. I also have some pretty strong feelings about compassionate use regarding experimental drugs /treatment protocols. I have heard some heartbreaking stories from neurology about an Alzheimer's trial that finished not too long ago. The people who were on the actual drug, not placebo had MASSIVE increases in day to day memory function and some of them regained the ability to have a normal conversation, regained some of their old personality, and after the study concluded, they had to go back to being... not-as -human as they were while on the drug. Which in my opinion is a criminally callous move on the part of the study sponsor and the FDA. These people had a taste of being a person again, a bit of hope, and they volunteered (Or were volunteered in some cases), proved the efficacy of the drug, and then were cut off cold turkey. The coordinator who worked on the trial said that it was enough to get her to switch out of geriatric neuro.When my uncle was diagnosed with brain cancer, my grandfather spent hundreds of hours reading medical journals and looking for as many low-chance, high-risk studies and treatment plans as possible. He turned up many options my uncle's family had no idea about. That should not have been his job.
The real bind is the 'No Better options' bit. That's coercion, which is something that we have to avoid. Nevermind that the 'coercion' is 'I'm probably going do die really soon and want to at least help out if you can't treat me/cure me/ improve my quality of life.' Research has to be voluntary, and being put between a rock and the hardest possible place makes conducting that kind of study very difficult both practically and ethically speaking.
So it's preferable to do the riskier studies on people with less risky options? That's counterintuitive, at least. I'm pretty sure I'd opt in for "I'm probably going do die really soon and want to at least help out if you can't treat me/cure me/ improve my quality of life" if I were going to die pretty soon, at least with a side of "and if it goes wrong in a way that hurts, make sure you give me the good drugs."
It's more a case of a lot of studies are intentionally being designed to focus on early diagnosis, early intervention type stuff. Of the set of 'Clinical Research Studies' a small portion are on high risk, ethically difficult populations. As it is, my research is difficult enough because we are asking people to participate in research in the same setting where they are receiving some of the highest quality care possible for the disease, which borders on ethically sticky. Lots of cardiologists have patients with this diagnosis, but not a lot of cardiologists have outcomes like my team, so we have to be very careful about how we approach the consenting process. We have an incredibly low threshold for disqualifying someone we believe is feeling forced to participate including kids not wanting to spend a whole day in the hospital getting poked, prodded and stared at. And that's for relatively non-invasive, low-risk procedures and interventions.So it's preferable to do the riskier studies on people with less risky options?
Maybe it's a good idea for a patient to hire out a medical librarian if diagnosed with a terrible disease that lacks well known treatments. Part of the problem is that doctors know their sphere of influence, but new information is cumbersome, constantly evolving, and diffuse. No one can keep up with it all, let alone any physician who is already probably working 50, 60, 70 hours per week treating patients. I would say it's always in a patient's best interest to gather as much knowledge as possible for their self. Second, third, and fourth opinions should always be sought for life threatening diseases (provided that it's not an emergency, obviously).
This is certainly the biggest problem. But if you're paying a hundred thousand dollars, or your insurance is paying five times that, relevant medical research should come with the package.but new information is cumbersome, constantly evolving, and diffuse. No one can keep up with it all, let alone any physician who is already probably working 50, 60, 70 hours per week treating patients.
Your insurance company has no interest in you having an excess of information. What they will cover in the majority of cases is limited to standard care. Sadly, they will not be paying for your bone marrow cells any time soon. The FDA will not help in this regard either.