Hey to All.
I know that the ALA study got everyone upset and I am happy we all emailed her.We all pretty much got the same response from Heather,defending the study and the integrity of the results.If only this investigation would conclude!
The Merck company contacted our Senator and indicated there was a conclusion and then ,they never got back to her before the weekend.I will have news early in the week.Please everyone just keep on voicing your concerns by reaching out any way you can.Sometimes it seems unbearable and I have to take a break with the communications on this website but,I continue my communication with my local contacts and the FDA.
I would love quick results and everyone would love this to get the publicity this story deserves but,if you look at how far we have come getting attention focused on this drug it is amazing.
This website has been here for years and people have complained and nothing has been accomplished until now.Our system is so broken it will take time to fix it.Drugs get approved everyday and when they are put out for multi use,the population benefit -risk ratio changes and there is little oversight on this matter.
The problem is much bigger than just notification of updated side effects,which indeed is why our son died from this drug.It is reporting adverse events to the FDA and the drug company and following up on your report.We can only fight within the system of the government that is in place at the moment and push for change to take place in there programs.
This is what has take place as of this year,The FDA's new 'Safe Use "iniative(which when it gets further developed will increase our partnerships with physicians as well as patients) and the July 2008 AAM report" Education in Safe and Effective Prescribing Practices" which aims to address the education of the next generation of physicians on how to best use medicines.This may help in notification practices and over prescribing but, we want the drug companies to lose the unprecedented control over the clinical research and and evaluation of there own drugs.What other company in the USA, gets to self regulate.Change will come ,we have asked for accountability by having a signature exchange when new and updated side effects are found.Full disclosure of all reported adverse events to doctors from the company representatives,with signature required upon full understanding of the benefit -risk ratio change. A prescriber should know all the good and the bad about a medicine they have chosen to dispense,if not then they should not be able to dispense it.If we were not knowledgeable about selling mushrooms and we sold the poisonous ones ,because we did not take the time it would take to educate ourselves about them,would we not be legally responsible for our actions.
Accountability is what we are asking for and maybe the candyland doctor prescribing practices would stop.They seem to ,not have a responsibility to their patients and the company has no responsibility to the prescribers,so who is responsible for our safety?
I will keep fighting for real change and all you people must do the same ,make an appointment with your representatives and have them contact our Congress representative of NY,maybe with enough onboard we can get the legislation we need to put a law in place for proper notification practices.Kirsten E. Gillibrand Member of the US House of Representatives 120 Cannon House Office Builing Washington, D.C. 20515
This is how change is made ,if you want to help please go forward and do this and don't stop until they listen.I am always willing to do whatever I can,it is physically exhausting and sometimes I just have to step away but, my daily review of this site has not stopped and my fight will continue.Dave and I sit here and our hearts just break for all but, we need people to push their Representatives they do work for the people just remind them of that.Any one with questions or that wants to communicate via private email just ask for my email address or phone number or leave me yours and a time and I will be sure to contact you,Kate M.
Kate, this website has changed our family life dramatically. After reading so many of the comments made by other families. We took our son off Singulair that night. He is like a completely different child. When I talked with our allergist on Thursday he said that our pediatrician probably put him on the medicine in haste and now FOUR YEARS later we find out it has been the Singulair causing the mood changes and "melt downs", the stomach PAIN, and leg cramps. We have done 2 controlled experiments with our son this summer and we are absolutely convinced that the Singulair was causing him these problems. It's people like you and Dave who make a difference. I am so very sorry for your loss and for the way this medication has hurt so many families. But at least you haven't given up. You have have risen to the occassion and you ARE making a difference in the lives of people just like my 7 year old son, who now can do homework without a "melt down", and he sleeps through the night and so many other wonderful things. I'm sorry this is so long, but I'm so thankful for what you are doing and for all the comments everyone has made that convinced me to take my son off this horrible medicine. When we talked to our allergist on Thursday, he said Singulair rarely causes these kinds of problems, BUT then he said, "You don't have to be a meterologist to know that it's raining." He fully supported us taking our son off the medication and has suggested alternatives that are not offered by the drug companies. Thank you again and you are in our prayers
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