Hi,
I'm a stage IV patient who finished Ipi this summer (after having failed IL2) and it doesn't look like it's going to do enough for me so my doctors want me to try to enrol in a PD-1 trial. I had one lined up and was ready to sign the consent/start the prescreening when we found out our insurance won't cover anything if I'm in a clinical trial. We've been scrambling the last couple of days trying to figure out what to do. Our (or I should say my husband's as I have not been able to work for a couple of years due to treatment) income is too high to qualify for any of the financial assistance programs that seem to be available, but the financial office where the trial is being conducted said that the out of pocket cost to us for the first 4 cycles (about 8 weeks) would be upwards of $25,000. That's approaching half of my husband's yearly salary and is an impossibility.
In my research I found that with the ACA going into effect insurance plans are required to cover patients enrolled in trials beginning Jan 1, 2014, but when I looked further I found that our plan (through his employer) is one that will be grandfathered in and does not have to comply with that part of the law, so even if I delay (and pray) until Jan 1 I would not be covered. We have a wonderful cancer resouce center near us and I spent half the day yesterday with them helping me make phone calls to the state offices who regulate insurance only to find out that my husband's employer has a private contract (I'm not that clear on exactly how this works) so that the state has no jurisdiction over that contract and can't help me. Their suggestion was to enroll, start accruing charges, then when they're denied try to appeal, but even they admitted that wasn't likely to suceed on any significant level, which means we still can't afford a trial.
Now we're looking into dropping me from his isurance and possibly trying to buy a separate private plan for me, maybe through the state exchange for the ACA but are having trouble figuring out what the coverage for trials would be, if it's enough, and even if the hospitals I would need to go to would accept that insurance if we bought it. Add to that that it's likely going to be another $600-$700 a month I'm not sure we can afford that either. Again we (or he) makes just enough for us not to qualify for any of the discounts or subsidies offered by the ACA and there's even a chance that we won't be allowed to purchase one of those plans because I can be covered through my husband's insurance. I have a call in to a navigator to try and help sort this out, but I was also hoping that someone here might have some other ideas because we're running out of both ideas and time.
Anything that could help would be very much appreciated. We're in NY state, by the way if that helps.
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