Laurellynne
Member
What is the name of your state? North Carolina
Tysabri had been fast tracked to treat Multiple Scleoris due to it's glowing clinical trials. Shortly after general participants of the IV montly dosage had began, it was discovered that three patients in the clinical trial had contracted a rare brain wasting disease, called PML caused from the JCVirus.
Having had a progressive course of Multiple Sclerosis I was already on steroids and a chemotherapy drug, Novantrone. We felt that Tysabri may be of huge benefit to slow my disability. I had to have a port/cath inserted as my viens viable but concerns that they would give out down the round as Tysabri IV infusion is for the life of the MSer. Feb. 2005 I received my first and only infusion of Tysabri. The drug was pulled from the market 13 days later. Obviously I was and still am frightened that due to the massive immunosuppresion drugs in my body, that the addition of Tysabri may well create this horrible disease called primary multifocal leukonencephalapathy. This disease has been discovered in AIDS most recently.
Obviously I've lost trust in Biogen and Elan due to the fact that their own scientist did not discovere these three patients in a timely matter. As a matter of fact two patients are dead, one MSer and one Chron's patient and had to be exhumed to determine the true cause of their deaths. The MS patient was young with mild symptoms and the clinical doctors missed the diagnosis.
My questions: Can I sue inorder to recoup some of the cost of the surgery for the port/cather. I would not have had it placed in otherwise. It is however having to be flushed every 4-6 weeks(expensive for life of the port) and has been used for steroids and Novantrone (Mitoxantrone) chemo on a few occassions. But I would not have had the surgery for the part had I been aware that Tysabri would be leaving the market place, as I had planned on using that drug every 28 days for the rest of my life
Next: There was very fishy timing on the removal of Tysabri by Biogen timewise. Some reports indicate that Biogen was alerted to the potential for this horrible disease (PML) the first week of Februaury and did not pull it till the end of Feb. Plus the maket timing showed massive sell off by the head honchos during this sesitive time period. WOuld the SEC not be interested in the chairman and other honchos selling millions of their dollars. This drug was suppose to be blockbuster for their company and I guess they were trying to grab as much money as possible and sell before the losses were too high.
Third, I was assured by Biogen the drug would be $2300 every 28 days, induction to be done in a onocology set up. My god when I received my first bill it was $4900, $4600 for the drug only! I do not have this in writing, but numberous telehone calls to my insurer and to Medicare (a seconday insurer for me) agreed as to the $2300 dollar figure, I also saw the $2300 in newspaper articles and hints from Biogen that it would be very competitively priced as they were going up against one of their own MS drugs (probably didn't want to canabilize those sales) it posted in a few medical pamphlets and releases. I have to pay20% of the $4600 figure and frankly can not afford it. Even at $2300, not sure how long we could have held up financially.
ANy chance that I have a legitimite lawsuit to recoup moneies lost from the port/cath surgery (which by the way trigged a huge exacerbation and had to receive steroids to help reduce the inflammation from the attack) and what about anxiety and the stopping of the current protocal of Novantrone that I was on. Frankly I'm disgusted with the whole thing and have to return to using the chemo based drug.
FOrgive my rambaling...THank you , Lauellynne
Tysabri had been fast tracked to treat Multiple Scleoris due to it's glowing clinical trials. Shortly after general participants of the IV montly dosage had began, it was discovered that three patients in the clinical trial had contracted a rare brain wasting disease, called PML caused from the JCVirus.
Having had a progressive course of Multiple Sclerosis I was already on steroids and a chemotherapy drug, Novantrone. We felt that Tysabri may be of huge benefit to slow my disability. I had to have a port/cath inserted as my viens viable but concerns that they would give out down the round as Tysabri IV infusion is for the life of the MSer. Feb. 2005 I received my first and only infusion of Tysabri. The drug was pulled from the market 13 days later. Obviously I was and still am frightened that due to the massive immunosuppresion drugs in my body, that the addition of Tysabri may well create this horrible disease called primary multifocal leukonencephalapathy. This disease has been discovered in AIDS most recently.
Obviously I've lost trust in Biogen and Elan due to the fact that their own scientist did not discovere these three patients in a timely matter. As a matter of fact two patients are dead, one MSer and one Chron's patient and had to be exhumed to determine the true cause of their deaths. The MS patient was young with mild symptoms and the clinical doctors missed the diagnosis.
My questions: Can I sue inorder to recoup some of the cost of the surgery for the port/cather. I would not have had it placed in otherwise. It is however having to be flushed every 4-6 weeks(expensive for life of the port) and has been used for steroids and Novantrone (Mitoxantrone) chemo on a few occassions. But I would not have had the surgery for the part had I been aware that Tysabri would be leaving the market place, as I had planned on using that drug every 28 days for the rest of my life
Next: There was very fishy timing on the removal of Tysabri by Biogen timewise. Some reports indicate that Biogen was alerted to the potential for this horrible disease (PML) the first week of Februaury and did not pull it till the end of Feb. Plus the maket timing showed massive sell off by the head honchos during this sesitive time period. WOuld the SEC not be interested in the chairman and other honchos selling millions of their dollars. This drug was suppose to be blockbuster for their company and I guess they were trying to grab as much money as possible and sell before the losses were too high.
Third, I was assured by Biogen the drug would be $2300 every 28 days, induction to be done in a onocology set up. My god when I received my first bill it was $4900, $4600 for the drug only! I do not have this in writing, but numberous telehone calls to my insurer and to Medicare (a seconday insurer for me) agreed as to the $2300 dollar figure, I also saw the $2300 in newspaper articles and hints from Biogen that it would be very competitively priced as they were going up against one of their own MS drugs (probably didn't want to canabilize those sales) it posted in a few medical pamphlets and releases. I have to pay20% of the $4600 figure and frankly can not afford it. Even at $2300, not sure how long we could have held up financially.
ANy chance that I have a legitimite lawsuit to recoup moneies lost from the port/cath surgery (which by the way trigged a huge exacerbation and had to receive steroids to help reduce the inflammation from the attack) and what about anxiety and the stopping of the current protocal of Novantrone that I was on. Frankly I'm disgusted with the whole thing and have to return to using the chemo based drug.
FOrgive my rambaling...THank you , Lauellynne