myeoma therapy

We can learn a lot about myeoma therapy from Europe

Post in Transplants

I’m excited about this weeks morning Cure Talks broadcast, featuring Dr. Antonio Palumbo, the outspoken myeloma expert from Italy.  I feel like I know Dr. Palumbo well.  Although I’ve only met him briefly, I’ve watched him make dozens of presentations at ASH and ASCO.  It wouldn’t be a stretch to call Dr. Palumbo the preeminent multiple myeloma specialist in Europe.

Our broadcasts are usually late in the afternoon.  But as Jimmy Buffett sings, “It’s always 5:00 somewhere!”  9 am our time transplants to afternoon there.  You can read more and register below:

Cure Talk panelists, Gary Petersen, Pat Killingsworth, Jack Aiello and Lizzy Smith–along with listeners like you–can question Dr. Palumbo about similarities and differences between treatment in the U.S. and those in Europe. 

Never shy to give an opinion, I like listening to Dr. Palumbo.  He brings a different perspective to the table.  Since European docs aren’t able to use myeloma drugs off label, AND it can take an extra year or more to gain access to some of the newest, experimental drugs,  myeloma docs in Europe to be more creative, working with what they can use.

As always, a link to a broadcast replay will be available if you can’t listen live on phone or computer; a written transcript should be ready a few days later, too.

Switching gears, my email box has been flooded with concerns and suggestions about the cost of oral chemotherapy meds.  My good friend and contributor to my book, Financial Aid for Myeloma Patients and Caregivers, Richard Blustein, passed along this suggestion for me as I struggle trying to find ways to rearrange my myeloma therapy early in the calendar year so as much qualifies for reimbursement from LLL Co-Pay Program as possible.  I’ve highlighted a few key points:

Here is what you are missing that could save you thousands. You are entitled to Medicare with a Supplemental plan. Switch to Medicare and then get the best supplemental plan there is. In my case, it is UHC Aaarp plan which is now up to $530 a month and a supplemental drug plan (Blue Cross) for $62. The LLS pays for my insurance including the financial part of my social security. The premier supplemental plan covers everything that medicare does not cover. Therefore, in my case not a penny out of pocket, since I qualified for medicare. I have helped all of the people in my group and gotten them to change their plan, this way.

Great advice!  But as with anything complicated, there are a few possible downsides.  I just heard from a reader that was denied benefits from the Chronic Disease Fund, even after they qualified.  The reason: not enough funds available at this time.

My point?  Richard’s plan only works if LLS is reimbursing his high Medicare supplemental insurance premiums.  This year, so far, so good.  Next year?  Now you’re stuck.  Not saying don’t do it.  Just be prudent.  Second, technically, Medicare only pays for a single stem cell transplant, and no allos.  While it may be possible to wear them down and get exceptions, there are no guarantees.

And that would be Richard’s point.  There are no guarantees.  We do the best we can for this year–maybe next–and then do what we must to make the most out of a bad situation.  Thanks for all you do to help myeloma patients and caregivers save thousands, Richard!  They should probably build a statue of him out in front of Oak Hill Hospital