About Clinical Drug Trials - my experience
Submitted by sureimsore on Fri, 05/13/2016 - 13:34
Obviously clinical drug trials on humans are a necessity to finding cures and therapeutic drugs. However, there has been a great amount of corruption involved as well; just do an internet search on 'clinical trial corruption' and you will find many papers and articles written on such.
I myself had participated in one almost 1-year ago today. The horrible adverse events I experienced as a result has brought about awareness of how little protection and recourse there is for volunteers. I want to share a little of this, because there are some of us that are vulnerable due to our pain that will try anything. So please take the time and just read the below and take it into consideration before agreeing to participate in any drug trial.
The study facility that you will be volunteering at: are they a private medical facility (ex: acme, inc.) or a learning institution/hospital?
This is very important. If it is a private facility or doctors office, you should do this very simple thing before agreeing to the research: do an internet search of the company name and/or the doctor if he has a private office. And here is why:
I started experiencing some bad adverse events on a weekend. I tried calling the 24hr tel. # on the informed consent. For 1.5hrs I tried and just kept getting voicemail.
So I tried googling the facility name, to see if I could get an alternate office number. The results were strange and perplexing. The company kept coming up on business listing sites, with all kinds of services listed. (ex: Acme inc, moving services).
I found business listings for them advertising carpet cleaning, duct/vent cleaning, restaurant supplies, etc.
Fast forward months later, in speaking with an attorney, this is common practice among the more unreputable clinical trial facilities. The reason they do this, is to receive volunteer retention bonus money from the study sponsor. In other words, if you want to drop out, and the study doctor talks you into staying (such as what happened to me), they will get a bonus.
Now, you may ask why bother: this is to avoid suspicion, when the study sponsor pays them this bonus, the check will be recorded as 'payment for carpet cleaning services.'
The dangling carrot of retention bonus $ will cause some doctors to overlook your adverse events and decide to keep you participating even though it may be of danger to your health, as what happened to me.
Every study has to have an IRB to report complaints to, but they are paid by the study sponsor, so they are not looking out for your best interest. In fact, when I called and tried to place a complaint, suddenly the receptionist said that 'it was a new phone system, and she did not know how to work it.' She took my name/number and said someone will call me back. 10 months later and I am still waiting (guess no one there knows how to work the phone).
I reported what happened to me, along with links to these sham online presence to the FDA (which they must be aware of); I received a nice canned response of 'we will take this under consideration.' Otherwise, this facility is still conducting clinical trials, and continuing their shenanigans.
I myself had participated in one almost 1-year ago today. The horrible adverse events I experienced as a result has brought about awareness of how little protection and recourse there is for volunteers. I want to share a little of this, because there are some of us that are vulnerable due to our pain that will try anything. So please take the time and just read the below and take it into consideration before agreeing to participate in any drug trial.
The study facility that you will be volunteering at: are they a private medical facility (ex: acme, inc.) or a learning institution/hospital?
This is very important. If it is a private facility or doctors office, you should do this very simple thing before agreeing to the research: do an internet search of the company name and/or the doctor if he has a private office. And here is why:
I started experiencing some bad adverse events on a weekend. I tried calling the 24hr tel. # on the informed consent. For 1.5hrs I tried and just kept getting voicemail.
So I tried googling the facility name, to see if I could get an alternate office number. The results were strange and perplexing. The company kept coming up on business listing sites, with all kinds of services listed. (ex: Acme inc, moving services).
I found business listings for them advertising carpet cleaning, duct/vent cleaning, restaurant supplies, etc.
Fast forward months later, in speaking with an attorney, this is common practice among the more unreputable clinical trial facilities. The reason they do this, is to receive volunteer retention bonus money from the study sponsor. In other words, if you want to drop out, and the study doctor talks you into staying (such as what happened to me), they will get a bonus.
Now, you may ask why bother: this is to avoid suspicion, when the study sponsor pays them this bonus, the check will be recorded as 'payment for carpet cleaning services.'
The dangling carrot of retention bonus $ will cause some doctors to overlook your adverse events and decide to keep you participating even though it may be of danger to your health, as what happened to me.
Every study has to have an IRB to report complaints to, but they are paid by the study sponsor, so they are not looking out for your best interest. In fact, when I called and tried to place a complaint, suddenly the receptionist said that 'it was a new phone system, and she did not know how to work it.' She took my name/number and said someone will call me back. 10 months later and I am still waiting (guess no one there knows how to work the phone).
I reported what happened to me, along with links to these sham online presence to the FDA (which they must be aware of); I received a nice canned response of 'we will take this under consideration.' Otherwise, this facility is still conducting clinical trials, and continuing their shenanigans.
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