Sunday, January 15, 2012

Quack, quack

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.


Anonymous said...

I'm a regular reader of your blog.

I have nearly identical CLL prognostic indicators.

(1) I elected an insurance option where I pay 20% as well. However, I enjoy an annual out-of-pocket maximum ($3500 in my case).

(2) I inject in my thighs every other day in support of blood cell formation and maturation:
1cc Cyanocobalamin (B-12)
0.5 cc Folic acid (B9)
0.5 cc Thiamin (B1)
0.5 cc Pyroxidine (B6)

(3) I learned quickly that the spleen is the principal venue for RBC kill due to AIHA. I strongly recommend that all who suffer AIHA due to CLL undergo a splenectomy.

My hemoglobin values went from 5 to nearly 15 as a result of #2 and #3 above.

A nurse that administers my every four weeks IVIg informed me of a rule of thumb where hemoglobin values are concerned:

"One, two, three, four, five . . . stay alive . . . six, seven, eight, nine, ten . . . doctor think again."

Best wishes.

Anonymous said...

You might want to try this offering from GlaxoSmithKline to get your Arzerra treatment.

Commitment to Access is an assistance program for low-income patients who have no prescription drug benefits. An applicant may enroll by mailing a completed application, a current prescription and income documentation. A healthcare worker must call to first enroll Commitment to Access applicants.

To learn more about this program or to get an application, patients may contact Commitment to Access at 1-866-265-6491 or visit

Anonymous said...

This site might be better in your situation.

GSK offers the (CARES by GSK™) program.

David Arenson said...

Thanks for the helpful comments. I will have more to say on the subject of assistance from GSK in my next post.

To clarify, I believe my red cell problems now have to do substantially with marrow impaction and not with hemolysis as a result of AIHA.

As to the first comment: Did you notice an improvement in red counts after the injections but prior to the splenectomy? Is there any reason injections would work substantially better than taking the B vitamins in pill form?

BTW, I have heard that a hemoglobin of 7 is a pretty good marker at which a transfusion should be administered.

Anonymous said...

David, in answer to your Jan. 18 inquiries:

(1) I do not have data to answer your first question ~ "improvement in red counts . . . but prior to splenectomy." The hemolysis was massive and sudden in my case. My hem/onc later reported that it was the most acute case he'd ever seen (17 yrs of practice). In three weeks my hemoglobin value went from 14.7 (in contrast to my usual 15+) to in the range of 5 within 21 days.

It may interest you to know that I visited my primary care physician only hours (Friday PM) before suffering atrial fib, RVR, and a trip to an ER (Sunday early AM), all due to the hemolysis. After very nearly (2 second pause) undergoing electrical cardioversion in the ER, the pharma cardioversion kicked in. The ER doc shouted, "Stop. The drugs are working!" He'd just uttered, "Clear!"

I presented to my physician on that Friday complaining of discolored urine over a couple of weeks. I knew something was terribly wrong. My physician viewed a sample of my urine under a scope, looking evidently for RBCs. We both blew it.

There is considerable evidence that even healthy people do not absorb oral B vitamins anything even remotely like the resulting concentrations of B vitamins that are injected. I asked the same thing; my primary care physician scoffed at me. It is my belief that he was right.

Get packed red blood cells pronto. If for nothing else, you need not feel miserable. The value of 7.9 is considered borderline for infusion. Your seeming rapid decline makes even this determination moot. I repeat, get red blood cells now.

Rooting for you,
. . .

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