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Financial constraints preventing international myeloma patients from receiving optimal care

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Financial constraints preventing international myeloma patients from receiving optimal care

My inbox is flooded with emails from readers wishing my father well.  How kind and uplifting!  I am buoyed by your positive energy and support; ready to tackle another day.   Dad is a tough old guy!  So much for hospice predictions that he would be gone in a matter of hours.  That was two days ago.  Today I would like to focus on a similarly dire situation: tens of thousands of multiple myeloma patients worldwide that are unable to pay for their medication.

Myeloma survivor and Blog Talk Radio moderator, Gary Petersen, saw a need and started blogging last year.  His goal was/is to post overall survival (OS) statistics from hospitals and cancer centers that treat multiple myeloma.  Gary believes that some institutions offer better care than others–and that OS statistics would prove that.  Turns-out Gary was right!

As he continues to compile OS data from different locations, a clear pattern has emerged.  Patients that seek second opinions and/or are treated at cancer centers with more than one myeloma specialist–and that treat a large number of patients–end-up with significantly better OS statistics.  Apparently these specialty centers have significantly better results; two to three times better!

In other words, patients that go to places like Dana-Farber, Mayo Clinic and UAMS live on average two to three times longer than those that never get farther than seeing a local medical oncologist.  That’s an amazing discovery!

Additionally, Gary has revealed that patients who attend myeloma support groups regularly also live longer.  Combining the two can make a real, measurable difference in how long a multiple myeloma patient lives.

The how’s and why’s are a topic for posts of their own.  Today I wanted to share a new passion of Gary’s: helping myeloma patients in financial need.

Knowing that people like me are working hard to help financially strapped patients and caregivers here in the States, Gary has turned his attention to the desperate needs of international patients.

Gary contacted me recently to see if I would co-author an expose’ about the problem.  I agreed, writing at my father’s bedside last weekend.   Cure Talk’s Pryia Menon, a resident of India, also stepped-up and contributed.   Here’s a link to our article that Gary posted on his website Tuesday:

Multiple Myeloma Life Expectancy Prognosis – Is Where You Live a Key Factor in Survival?  by Gary Petersen, Pat Killingsworth and Priya Menon


It’s an ambitious project.  Why would I expect any less from a fellow myeloma patient activist that seems to be as driven as I am?

Three unique perspectives about an overwhelming problem.  I especially love Priya’s international perspective; she’s lived in both India and England.  Give it a look and share suggestions with us when you get a chance.

Feel good and keep smiling!  Pat