Outdated financial rules

Outdated financial rules could hit me hard in 2015

Post in Books

It’s a new year.  For me, that means a number of challenging insurance and financial hurdles loom large.  ObamaCare has nothing to do with it.  It’s all about complications caused by something that should be making my life easier: taking oral chemotherapy.

The doublet of pomalidomide and dexamethasone is working for me.  But financially, the fact that it isn’t combined with an infusion medication, like Velcade or Kyprolis, is going to hit me where it hurts: in my wallet.  Let me explain.

I have private medical insurance, courtesy my hard working wife.  The policy requires I pay the first $1,000 out-of-pocket, then 20% until I reach $3000 ($4,000).  Other than the fact that the out-of-pocket amount was only $600 last year, nothing has really changed on the insurance side.  But $4,000 (and it always ends up being a lot more) for me–and what could end up being a similarly large number for my wife as she works her way through a number of different health issues–could cost us as much as 20% of our income by the end of the year.  And that doesn’t include the cost of travel or time she misses from work.  OUCH!

Fortunately, I have qualified for the Leukemia and Lymphoma Society’s (LLS) co-pay program since the year after I was diagnosed.  But here’s the thing.  The LLS co-pay program (and Chronic Disease Fund’s similar program) don’t cover diagnostics.  That’s a huge part of any myeloma patient’s tab.  Blood work, genetic testing, electrophereses, SPEP tests, X rays, PET scans–none of it is eligible to be reimbursed.

Myeloma related blood work isn’t cheap, you know; many must be interpreted by a pathologist.  And we all know how expensive MRI’s and CT scans can be.

Additionally, doctors visits will only be reimbursed if you see the doctor on the same day as treatment.  Here’s how it works.

You see your doctor on a Wednesday.  Everything looks fine, so you’re hustled over to the infusion center for your Velcade sub-q injection or Kyprolis infusion.  In that case, the visit ($200) and cost of a nurse to administer therapy (believe it or not, as much as $1,500) and the drug ($1,500 – $3,000) are all eligible for reimbursement.

So last year–when I was still on Velcade–I blew through my deductibles and out of pocket expenses in three weeks!  And the LLS reimbursed me for all but $400 or so for blood work (I made sure my doctor delayed any SPEP testing until February).  Of course I carefully planned it that way.  Still, AWESOME!  I ended up being responsible for less than $500.  That really helps.

One would think that means if I take POM the day I see my medical oncologist or specialist, that visit would qualify.  Think again.  That makes too much sense.

Additionally, the LLS reimbursed me (after a lot of pain-in-the-neck paperwork and verification) the money subtracted from Pattie’s paycheck for medical insurance every month, as well as remaining co-pays–between $5 and $250) for myeloma related medications for the rest of the year; I’m still responsible for paying that, even after my out-of-pocket maximum is reached.

Even with all of this, I never use anywhere near my total $10,000 LLS co-pay benefit.  I’m usually reimbursed about half of that.

But this year?  No infusions–at least for the first part of the year–which mean my doctors visits won’t be reimbursed, either.  I could end up paying the lion’s share of the $4,000.

I’ve thought about trying to get the sometimes painful lesion in my upper back radiated–not because the pain is so bad I desperately need it, but as a way to save a lot of money (the LLS reimburses radiation therapy expenses).  Another option: getting my medical oncologist to schedule another Zometa infusion after our next monthly visit.

I felt some jaw pain after my last infusion, so I was going to make sure the next one is infused more slowly and spaced more than a month apart.   As a matter of fact, I was thinking about asking my doctor to skip Zometa altogether, or going back to Aredia every three or four months.

But I would same a thousand dollars or more (that doctor’s visit and the cost of Novartis’ expensive bisphosphonate would be fully reimbursed by the LLS) if I push my next infusion up.  How crazy is that?  Not that I’d do it, but that the system–in this case foundations that reimburse patient expenses–work that way: another hidden cost many patients experience while taking oral chemotherapy.

So until the IMF and LLS have successfully pushed through oral chemotherapy equity legislation nationally, patients will get hit hard financially one way or the other.  This defies common sense, since oral chemo saves the time and cost of having a drug administered in clinic.