The story of Rituxan and the weakest point in the system

[centenarian100]

I think the insurance companies should take it upon themselves to cover rituximab. It does not cost them any money because it is actually less expensive than many disease modifying therapies which are clearly less effective.

-C

[1eye]

I think there is only one goal in research by drug companies. They have been paying too little too long. Patients have been convinced they can cut the queue and treat their diseae with a newer treatment by being a guinea pig. That way drug vendors get a free ride. I think it's time patients stopped doing this voluntarily. I think we should all charge a fee. The only way the vendors will agree to this is if they cannot get subjects any other way.

Therefore I submit the following, for each person with MS to complete and have notarized. If it meets with universal solidarity, we MS paients will get paid.

Fees: 3 months of testing result in the tester paying the subject $100,000 US currency.
Non-withdrawing subjects are paid an additional $200,000 US currency at the end of the trial, regardless if it meets any end points.

Subjects who have been randomized to placebo are paid $200,000 US currency at the end of the trial, regardless if it meets any end points.

Being an MS patient, and in honour of all persons who have died of or with MS, I refuse to participate in any MS research unless paid according to the foregoing fee schedule.

Chris Sullivan

[centenarian100]

I think there is only one goal in research by drug companies. They have been paying too little too long. Patients have been convinced they can cut the queue and treat their diseae with a newer treatment by being a guinea pig. That way drug vendors get a free ride. I think it's time patients stopped doing this voluntarily. I think we should all charge a fee. The only way the vendors will agree to this is if they cannot get subjects any other way.

Therefore I submit the following, for each person with MS to complete and have notarized. If it meets with universal solidarity, we MS paients will get paid.

Fees: 3 months of testing result in the tester paying the subject $100,000 US currency.
Non-withdrawing subjects are paid an additional $200,000 US currency at the end of the trial, regardless if it meets any end points.

Subjects who have been randomized to placebo are paid $200,000 US currency at the end of the trial, regardless if it meets any end points.

Being an MS patient, and in honour of all persons who have died of or with MS, I refuse to participate in any MS research unless paid according to the foregoing fee schedule.

Chris Sullivan

This is absurd. It would be impossible to fund any project. A study with 400 patients, half receiving placebo, would cost $120,000,000 just to pay the patients. Also, this would invalidate the study because there would be massive incentive to participate in these studies. Patients would fake MS just to participate. They would sign up for multiple trials and not take any of the research drugs. They would downplay side effects to remain in the trial. You would not be able to rely on the results.

We should participate in research in order to advance the field. This is the only way to accurately test if new treatments are effective and safe.

[1eye]

Not absurd at all. $120 megabucks is a pittance. It makes the drug company more honest. There would be no incentive for healthy controls, who would not be paid. There would probably be fewer trials with drugs that have no chance of working (like the one I was on). These trials would less often be stock or other kinds of scams. If you don't think a risk of being on placebo, for a person whose health is disappearing, is worth the money, I hope you have the same happen to you. People should be paid. I you think it's easy to fake MS you ought to try it. If your doctor was not very certain you should never have been diagnosed. Incentive to participate invalidates nothing.

[centenarian100]

Not absurd at all. $120 megabucks is a pittance. It makes the drug company more honest. There would be no incentive for healthy controls, who would not be paid. There would probably be fewer trials with drugs that have no chance of working (like the one I was on). These trials would less often be stock or other kinds of scams. If you don't think a risk of being on placebo, for a person whose health is disappearing, is worth the money, I hope you have the same happen to you. People should be paid. I you think it's easy to fake MS you ought to try it. If your doctor was not very certain you should never have been diagnosed. Incentive to participate invalidates nothing.

For that amount of money, people would sign up for the study just to make money. They would not even bother to take the drug if they weren't interested in the study. People might also be willing to take more risk than they otherwise would if they were to receive monetary compensation.

Per the cedar sinai website on research: "Some studies compensate participants for the time they spent participating in a trial; generally this amount is given to cover expenses for parking, transportation, meals, and possibly for lost work time; however, payment may not be substantial enough to constitute inducement to participate for monetary gain."

This is a well known principle.

Would you trust the results of a study if the participants received thousands of dollars compensation?

Generally speaking, it is unethical to give a patient a placebo if you do not have genuine clinical equipoise, and this is why placebo controlled trials for relapsing multiple sclerosis should not be done in the united states where standard treatments are readily available.

No one is forcing you to participate in these studies. If you don't want to risk receiving a placebo, don't sign up for the study.

[1eye]

Why is it I think a letter-writing campaign to Trump is doomed to failure? Is it because he cares so much about sick people?

I am afraid so. But there are other countries in which such a proposal could work. What do you think about Canada or UK?

People could write to Justin Trudeau, and/or Kirsty Duncan, Canada's science minister.

On a completely different topic, what about the UBC trial? Isn't it Canadian?

Scientists should watch out for their reputations when associated with a piece of shoddy science. This also applies to members of the FDA, and people who promote Donald Trump's lies and defamations. How long do you think the truth about CCSVI will stay hidden? Do you think Canadian scientists and doctors will just accept it, and stop asking quesions? Not likely.

Somebody once said something like 'you will know them by their fruit.' He was talking about trees. I think most folks can understand the analogy. I think if I had listened uncritically to my several neurologists about my MS, this fruit would long ago have fallen off the tree and rotted.

I will be trying out a completed pair of balance glasses any day now. I will post a video.

[David1949]

We all want safe and effective drugs. But the FDA approval process has grown very cumbersome and expensive. If that stops the development of effective but inexpensive drugs then maybe they made it too safe. President Trump said he wants to streamline the process. https://www.thestreet.com/story/1397285 ... rices.html
Lets hope that happens.

[NHE]

We all want safe and effective drugs. But the FDA approval process has grown very cumbersome and expensive. If that stops the development of effective but inexpensive drugs then maybe they made it too safe. President Trump said he wants to streamline the process. https://www.thestreet.com/story/1397285 ... rices.html
Lets hope that happens.

I think tRump is just trying to make it easier for pharma companies to make a buck. Less regulations may very well lead to more dangerous drugs being approved.

[1eye]

Re: The story of Rituxan and the weakest point in the system

Postby centenarian100 » Fri Mar 03, 2017 8:46 pm

1eye wrote:

Not absurd at all. $120 megabucks is a pittance. It makes the drug company more honest. There would be no incentive for healthy controls, who would not be paid. There would probably be fewer trials with drugs that have no chance of working (like the one I was on). These trials would less often be stock or other kinds of scams. If you don't think a risk of being on placebo, for a person whose health is disappearing, is worth the money, I hope you have the same happen to you. People should be paid. I you think it's easy to fake MS you ought to try it. If your doctor was not very certain you should never have been diagnosed. Incentive to participate invalidates nothing.

For that amount of money, people would sign up for the study just to make money. They would not even bother to take the drug if they weren't interested in the study. People might also be willing to take more risk than they otherwise would if they were to receive monetary compensation.

Per the cedar sinai website on research: "Some studies compensate participants for the time they spent participating in a trial; generally this amount is given to cover expenses for parking, transportation, meals, and possibly for lost work time; however, payment may not be substantial enough to constitute inducement to participate for monetary gain."

This is a well known principle.

Would you trust the results of a study if the participants received thousands of dollars compensation?

Generally speaking, it is unethical to give a patient a placebo if you do not have genuine clinical equipoise, and this is why placebo controlled trials for relapsing multiple sclerosis should not be done in the united states where standard treatments are readily available.

No one is forcing you to participate in these studies. If you don't want to risk receiving a placebo, don't sign up for the study.

Who decides whether payment is "substantial enough?" Cedar Sinai is not a court of law. The aim here is to make a study believable. If everyone is always paid a predetermined amount, properly, no one study is more or less believable than another. Greed is the only reason people are not paid. That people got paid says nothing about the study itself. What about the thousands of dollars per subject the people are paid to run these studies? Funny how you never see anyone arguing against a study's conclusions based on that. "Oh, but we don't publish that." "OK, then I'll believe."

Just to make money? If people knew the real risks they were taking, they would really be giving "informed consent." Unfortunately they are "washed out" and it may be months or years before they have real progression. That is the risk that proper payment would compensate them for. Drugs mostly fail, Sometimes they kill.

In fact, if Cedar-Sinai said something about that, science might improve. Funny how people are about their own money compared to how they are about anyone else's. One could easily attack most drug studies on that basis if that, along with unfavorable results, were not kept secret. It's an incestuous world, this so called medical science.

Lots of bad results, paid for by the public purse, are kept secret. Hooray for truth, accountability, and the march of science.

No-one is forcing me to participate? To risk placebo? You won't find me on anyone's list of subjects again, thank you very much. I think MS patients should all go on strike. I have known a lot of patients, who went on after drug trials to continue taking the drugs. Somehow, none of them has managed to avoid progression. I have also met someone who had nerve damage, from PML. Lucky to have lived at all.

I hope someday you are faced with a similar choice, and face scientifc carelessness in all its glory, when you have to submit to it. You will find out how much fun that can be.