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Home/Diagnostics, News, Tips, Transplants/MYELOMA MEDICARE ALERT!


After the obligatory 2 year waiting period following my approval to receive Social Security Disability (SSDI), I became eligible to receive Medicare.  I respectfully declined it.  Turns out my instinct were right!

First, a comment.  Being forced to wait for medical coverage for two years when many patients need help NOW is wrong.  It’s just wrong!

How do I really feel?   Fortunately, I had an option.  My wife’s Cigna insurance through work was less expensive and performing well.  I knew patients with private insurance sometimes get priority service and access to additional services not available to Medicare patients without quality supplemental plans.  But the primary reason I took a pass: Medicare only allows one autologous stem cell transplant for multiple myeloma patients.  One.  As much as I dreaded the thought of undergoing even one SCT, I knew that there may come a time when I needed a second or third.  Worse, Medicare will not cover an allogeniec (Donor) SCT at all.  They’re considered experimental.


Earlier this week, one of our ever diligent readers, Bonnie, alerted me to a new Medicare restriction on PET scans.  Apparently the program now has a lifetime cap of three PET scans  allowed per diagnosis.  As a non-secreter, Bonnie was very concerned about this.  Looking over the corroborating evidence she forwarded, I interpret it to be limited to three PET scans after a diagnosis is confirmed.  Does that mean a PET used to help diagnose a patient early on doesn’t count against the three test limit?  I believe there is an appeal process; not sure being a non-secreter qualifies.  And do high end supplemental plans pay for additional scans?  Maybe some of you could check and let us know.

In some ways these limits make sense.  I just received my Mayo Clinic bill (insurance is covering it) for my recent PET.  It was well over $7,000.  But for someone like Bonnie, news like this is an understandable concern.  Most don’t have an option like I did.

The good news?  The Leukemia and Lymphoma Society (LLS) is still taking applications for their Co-Pay Assistance Program that includes reimbursement of payments made for Medicare and supplemental insurance.  And income restrictions are surprisingly high; well over $80,000 for a husband and wife.  And there’s no asset test.

Worrying about side effects or how long you’ll live?  Don’t forget to stress over if you have the right insurance, and if it covers expensive diagnostics, stem cell transplants (allo and auto) and the latest, greatest and most expensive new myeloma therapies…

Isn’t this where we all scream together, “CANCER SUCKS!”

It’s still early.  Time for a walk on the beach.

Feel good and keep smiling!  Pat