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A letter from a friend
Below is a letter I just received from a friend--a woman who used to work for me in another life! Her son is dying of kidney failure and is desperate for a transplant. Her other son is a perfect match but they will not allow him to be a donor--read below to see why. I am posting this to see if any of your readers, Kate, might have ideas or suggestions. I did forward this to Niki Tsongas, to Sue Tucker, to my friend Deb Silberstein who is running for Sue Tucker’s seat and asked all of them to continue to forward it. I suggested to my friend she try to get in touch with John Kerry and to even try Scott Brown although I seriously doubt he would care one way or the other. Any ideas you might have would be welcomed. Thanks.
Cyn,
I apologize for being such a bother but I need to ask this favor. So, I am going to explain the situation as best as I can.
Last Tuesday, the 22nd both my sons met with the surgeon and she outlined the situation on paper so they would be able to understand it better. My oldest son is out as a donor because he has the same gene and because the disease is rare they don’t have a whole lot to go on other than that Peter needs a kidney transplant. But, he also has a 50% chance of reoccurrence and in order to stop that at this time there is only one (1) drug on the shelve and it costs ---$300, 000 per year --- and the insurance does not cover it.
Where is our government Cyn? that allows these Pharmaceutical companies to make their own prices and make their own rules at people’s expense? This disease attacks mostly children and rarely grownups. How can families afford such a price?
I have heard that some pharmaceutical companies are helpful for people that cannot afford their medication. I am not sure if this applies to this high priced drug but I thought..... If you can tell me how to get in touch with Niki Tsongas maybe a letter to them from her office might be helpful OR she might be able to tell me what else to do. It is all I am asking because you have met her and maybe she can help.
Again, and again I apologize but I have to reach out and do what I can do to help my son. Thank you, Martha
Comments
I wonder if it wouldn’t be worth while to get in touch with the pharmaceutical company. I simply can’t believe they actually expect anyone to buy a drug that would require a 30 year mortgage. What’s the point of making the drug if no one can afford it? I assume that’s a naive question where pharmaceuticals are concerned, but in the real world where real people live.....
Kate, the whole thing is insane. Now she has called the doctor back to ask more questions and it turns out this drug is very experimental and cannot be given to just anyone--still in drug trials. Apparently there is another one that might be effective and I guess it will only require a 20 year mortgage. I have, through people I know, gotten her in touch with some political people--all of whom are either running for office for the first time or up for reelection this year. They have all reached out to her and apparently getting involved.
Sure puts things into perspective, doesn’t it?
And on a happier note, looks like the weather people might actually be on the money this weekend and there might be 3-4 days of warm sunshine and gentle breezes. Heart be still!!
Happy 4th of July!
This is an entirely cynical view, but probably true nonetheless...the only time politicians pay any attention to us is when they’re begging for our money and our votes. I have noticed recently that my mailbox is suddenly full of begging notices from the Democrats. They have been completely quiet in the last year and a half. Now they want something from me. And I’m not sure they’ve even earned it. I hope your friend takes way advantage of their campaign consciousness raising and voter empathy. It’s the only time they have any.
Happy 4th back atcha! It’s going to be hotter than blazes here, but better than being drowned out or frozen out as has happened nearly every 4th for the past half dozen (or more) years.
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