"Ring the bells that still can ring/Forget your perfect offering/there is a crack in everything/that's how the light gets in...."
Leonard Cohen wrote those words, and they've been getting me through some pretty difficult days lately. For the past year, I've been the advocate and primary caregiver for Will, my neighbor, my friend, my inspiration, who has a mild developmental disability and stage IV melanoma.
Will fought an amazing battle to maintain his dignity and independence while part of an agency funded by the state to help persons with disabilities become more independent; an agency which did exactly the opposite. With the help of friends in the progressive community, Senator Richard Durbin, and Governor Pat Quinn, Will was - just last week - able to leave this agency and for the first time, truly direct his life. It was one of his most fervant goals, and he still can't quite believe it.
But he may not have much time to enjoy this new freedom.
Since Sept 2008, Will has been fighting another battle, a battle with melanoma. In 2008/2009, he participated in a clinical trial through Bristol Myers Squibb involving a placebo. The drug used in the trial is now being offered for compassionate use and his doctor ( a major melanoma oncologist) believes it would help him. However, the company will not "unblind" the data to let us know if he received the drug or the placebo and will not cooperate in assisting us in getting this drug for him. We are in a fairly desperate situation; and are seeking assistance in simply getting Bristol Myers Squibb to let us have this drug, as his oncologist, has recommended. Here are the facts:
This is the company link: Bristol Myers Squibb. They manufacture the drug, Ipilimumab, that we are trying to get for Will.
http://www.bms.com/...
This is the clinical trial Will was in - it is "ipilimumab versus placebo". We are trying to get Bristol Myers Squibb to "unblind" the trial data on Will to say whether or not he got the drug or the placebo.
http://www.yaletrials.org/...
This is the link that describes the "compassionate use" (e.g. if the doctor thinks the drug might benefit you, he can just request it and get it without going through clinical trial hoops). Will's doctor said that Bristol Myers Squibb won't let Will have the drug under this program because he was part of the clinical trial and they haven't written protocols for compassionate use for such patients. Again - we don't even know if Will GOT the drug. If he didn't, he should be eligible for immediate compassionate use.
http://www.cancer.gov/...
It's incredibly frustrating. Although everything at this point is experimental, they are getting good results with this drug and it's of low toxicity - Will could carry on with his life quite normally while using it; the other options are grim at best. The alternative: Will would probably have to first go into liver failure and then enter an inpatient treatment, which, if he survived, would render him very ill and quite helpless for some time.
There may be help for Will. But we don't know how to convince Bristol Myers Squibb to, at the very least, give us a chance to get the help in time. If you know the best way to appeal this decision, please let me know. Will is carrying on as best he can, trying to make some plans for the future - a future that is most uncertain. As always, he's focused on "ringing the bells that still can ring." As for me, I'm just desperately hoping that light gets in....