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Posted on July 11 2014 by Pat Killingsworth | 5,201 views

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

11 Comments For This Post

  1. Holt Says:

    Thanks. It’s always important to keep up on the insurance stuff. My reading of the language is that Medicare will routinely allow one PET scan as part of the initial diagnosis and 3 subsequent scans. After that they will deny “claims in excess of three for PET FDG scans for subsequent treatment strategy when the –KX modifier is not included”. A little searching around for the KX modifier provided the following:

    “Use of Modifier: When services qualify for either an automatic or manual exception, provider/suppliers should add a KX modifier to each line of the claim that contains a service that exceeds caps. This modifier represents the provider/supplier’s attestation of medical necessity.”

    So my uneducated guess is that you can qualify for additional PET scans if your doctor determines them to be medically necessary. I wonder if any of your readers have had experience with this clause.

  2. Pat Killingsworth Says:

    Good to know, Holt! Like I wrote, to be fair, private insurers have limits like this, too. Didn’t mean to overly alarm anyone. That’s why Bonnie was kind enough to speak to several people at Medicare and to find the helpful link she passed along to me. I held the story for almost a week. How hard will it be to get an exception(if that’s the right word)? Guess time will tell. All I know is if it were me and I was on Medicare, I would spend hours and hours investigating what various supplemental polices cover pertaining to myeloma and therapies I might anticipate needing. Oops! Another argument for being an informed myeloma patient! Otherwise how would one know what to look for. Need help? Email me anytime…

  3. Gary Petersen Says:

    Pat, Medicare is about $1100 per year and if you use it as your secondary provider it will cover the co pays, and deductibles which are not covered by your primary policy. Also, LLS will cover the cost of Medicare. It has been excellent for me and I usually have very little that is not paid for by insurance. To me it is a GREAT backup to Anita’s BCBS. BCBS has been a blessing. Gary

  4. Pat Killingsworth Says:

    I can use Medicare as a secondary? Did not know that. LLS covers my co-pays and insurance cost, but doesn’t cover diagnostics or a few co pays like Androgel. Any idea how I get started? If it works, I’ll add it to my book about Financial Aid next edition…

  5. Bonnie Tesh Says:

    Pat: When I was working in the medical field, you could indeed have Medicare as a secondary insurance. I think that is still the case if you qualify for Medicare as primary. You should check it out. Wish I had thought about that for you earlier.

  6. Holt Says:

    Whether Medicare is primary or secondary is not exactly a choice. It depends on your age, whether you are retired, working or disabled, and the insurance provided through your employer, former employer, or spouse’s employer. See the chart on page 6 of this site to see whether it would be primary or secondary for you

  7. margareta emnegard Says:

    After been reading all this stuff about insurance companies I understand that you need to be an informed patient not only about your disease but about your economic possibilities. Only one SCT? The good thing living i USA is that it seems to be possible to get the new medicines earlier, the bad thing is seems that you got to have the right insurance to get it.
    In that way it´s easier living in Sweden. I am never concerned about insurances. All my medicin and hospital visits are free. Just paying all very small amount and after that its all free for all citizens.
    I am going to a hemtologist who´s visting ASH in USA and have good knowledge, I feel comfort with him. And think his said last time I saw him, that POM is valuable in Sweden to, not Kyproprolis/carfilzomid yet but soon.
    I am following your journey and other`s, your menthal way of handling your disease is learning lessons for me.
    I am still in remission, got my MM diagnos in oct -10 and I don´t take any drugs, got an SCT in may -11, wonder for how long? The pressure thinking about this is sometimes overwhelming knowing how the future becomes for most of us.
    It´s summer here in Sweden, very hot weather for a few days, wé´ll soon be moving to our summerhouse permanently, looking forward to that.

    All my thouhgts to you Pat, I hope to have you around for a long time still.

  8. Pat Killingsworth Says:

    Thanks, Holt! Very, very helpful. Anyone out there know how I sign up to do that? Probably in the fall signing period? I’ve never been in contact with Medicare, simply declined coverage knowing that I could prove later on that my private coverage was better.

    On to Dear Margareta. How strange and convoluted our American health care system must seem! But we hold on to it in the face of daunting statistics that show its actually not that good. Sure, good for some, especially people like me that have good insurance and then get really sick. But many don’t have insurance at all. Medicare helps the elderly and disabled, but its not perfect. How did things get so messed up? Politics! A two party system. Deals need to be made to make both parties happy, instead of letting expert insiders work out something that makes sense. And to be fair, this is complicated stuff! I have always felt everyone here should be on Medicare, then shop the supplemental insurance market to help fill in the gaps. Sort of a modified single payer system. No nasty grams please! Margareta, people that don’t want the government involved in health care (and a lot of other things) feel passionately about that, too. But many of them protest with a sign in their hand and a Government Medicare card in their pocket! They would scream if you tried to take it away from them, even though they are protesting to get government out of health care. The bottom line: people aren’t always rational, are they?

    Thanks for reading. It’s so interested to hear about how our myeloma friends in other countries deal with what we do! Thanks for contributing! Glad you are doing so well!

  9. Holt Says:

    Pat – this might be helpful Getting above my pay grade.

  10. Pat Killingsworth Says:


  11. Beth Myers Says:

    When considering Medicare as a secondary insurance, be aware that it may not cover procedures or providers that your primary insurance does not cover. But if it helps pay copays and deductibles, terrific!

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