Just a little update. Marilyn (She Who Battles Insurance) and I are working on getting our ducks in a row. I have an appointment in early February with a doctor who is managing some clinical trials of Btk inhibitors. And in the meantime we are working on getting O+HDMP set up as a fallback.
"O" stands for "ofatumumab," aka Arzerra. Apparently it is a strange and unusual beast. We're working with one of the largest hospitals (where the infusion would take place) in one of the largest metropolitan areas (Phoenix) in the country, and ain't nobody never asked for none of that fancy 'tumumab stuff before. The inventory control manager of the hospital pharmacy is trying to figure out what it is and how to get hold of it.
Of course, all of this
would be much easier if I could just have the infusion at my
oncologist's office. But she's out of network, even though insurance
will pay for me to see her. They just won't pay her to treat me. And
this is why my brain is turning to mush, which is an unexpected side effect not of CLL, but of having American health insurance.
Surprisingly, it appears that insurance will approve ofatumumab -- under my medical benefit, not my pharmacy benefit. Medical benefit means it has to be "injected at the hospital," and I will owe 20% coinsurance. Pharmacy benefit means it's a drug with a $35 co-pay. Near as we can tell, I am going to be on the hook for something like $17,000 in coinsurance if I can't get some help from somewhere. Which means I can't afford it, unless I'd like to consider going bankrupt.
I am reminded of the late Dr. Terry Hamblin's many posts in which he discussed the merits of one drug or another, compared often negligible differences in progression-free survival, and concluded that the beaucoup expensive drug was not worth the cost. O+HDMP could turn into R+HDMP, I suppose, or chlorambucil plus prednisone, which costs almost nothing.
Meanwhile, maybe a trial will work out. . . . The big question is how a Btk inhibitor might affect marrow function. My hemoglobin is down to 9.6, and slowly trending south. Welcome to Stage 3.
What I do know is that some kind of treatment has to come soon, and February looks like the month. I'll report back when I'm finally sitting in the chair somewhere, having something happen.
CLL Society, LLS and the Cleveland Clinic Present a Free Patient and Caregiver Educational Forum on Nov. 11 on Chronic Lymphocytic Leukemia - The CLL Society, LLS and the Cleveland Clinic are hosting a Patient and Caregiver Forum on Nov. 11. It is going to be a super educational experience with C...
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