All of Adrienne's doctors have agreed that SGN-35 is the best option available to her. Unfortunately, she doesn't qualify for the trial because of her allo transplant and the company has refused exceptions. Her doc at City of Hope made a plea for single patient access or compassionate use, even offering to cover some of the costs, and they have again refused. None of this is a surprise to us. The company, thus far, has been totally unwilling to work with anyone so we decided to wait until we really needed it. So, now we need it and the battle lines are being drawn.
After several days of contemplating the right approach, we decided to start with the big Seattle Genetics investors, asking them to open the lines of communication. Just this morning, I put letters in the mail to Bill Gates and Paul Allen asking for their help. Well, you know Bill Gates. Paul Allen, another Microsoft alum and one of the wealthiest men in the country, is also a Hodgkin's survivor. I have calls into Dr. O'Connor who offered to contact the president of the company, and the doc at City of Hope hasn't given up yet, scheduling a call with the chief medical officer who turned our request down. However, I know of other docs who have advocated for their patients to this company and have gotten nowhere. It seems that they have the keys to the castle right now and aren't willing to let anyone in. We know that the media is an option but we'd like to try work on this amicably first. Please, if you have any suggestions, send me email at alison95070@yahoo.com.
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5 comments:
oh wow alison. i hope your fight is swiftly successful. what a great idea to contact bill gates and paul allen! it's a shame that this has to go so far though.
i wish i had some great advice, you know that i have learned just this past week with one of our board sisters that not all want to help in these matters. that just blows my mind.
if you haven't already i can only suggest you contact congressmen and senators. my dad did that for me and it did help, they are elected by us so it makes sense that they should want to help us.
i think the fact that adrienne's doctors are willing to help with costs says a lot. but if it does come to a point that public awareness is needed, please call on us to help get adrienne's story out there!
you amaze me as does adrienne!!! you are both so very strong. please keep us updated.
Alison,
This is crazy, but Bill Gates is giving the commencement speech at Harvard tomorrow. Do you know any of the medical staff or anyone who might be able to give Gates a copy of your letter? Don't know if it would be possible to approach him, but I would think someone high ranking enough could.
Janet
Ugh......can't believe you're having to go through this. Bad enough to have to fight the disease for this long but now you know there's a drug which would help Adrienne and you can't access it.......so infuriating and desperately sad.
You keep so level headed, Alison - Adrienne is so lucky to have you in her corner. Heather's right about contacting politicians....this is exactly the kind of situation when they should be trying to use their power for good.
Wishing you speedy success and sending you both continued love and support..........if only I had a magic wand.............x
Hello my friends <3 I've been following the discussion on the forum about the trial denial. I know you will write some very powerful letters to anyone that may be willing and able to help you in this fight to get this very promising trial started for Adrienne. Hoping and praying that it won't take long for you to hear the answer you want.
((HUGS))
Susan
Hi Alison,
When it comes to the media stuff, I'd be happy to help. If we make it complelling enough we could shoot for some national broadcast outlets or even 60 minutes.
I'm so annoyed for you guys!
Oh and PS I used to date a guy that now works in the radion oncology technology and Seattle Cancer Care Alliance... I know you mentioned that hospital at some point... if there's anything I can get him to do, let me know.
XO
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