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Adjusting to Your Growing Myeloma “Family”
Posted: Sep 16, 2022
Adjusting to Your Growing Myeloma “Family” image

Do silver clouds come with gray linings?  You know, the opposite of the cliché?

Could the good news of significantly more patients living with myeloma put a strain on access to their own health care?  Simply put, does the increased supply of patients create greater demands on a relatively static supply of physicians who can treat them?

What might that mean for a disease population of which an estimated 80% either never see or have indirect contact with a myeloma specialist?  Especially when it has been proven treatment supervised by a specialist could add as many as two years to life expectancy?

Two years in which researchers and clinicians may well have found a new drug or combination to add another two years, and so on.  Two years of annually welcoming 20,000 new members to our “club."

For those of you who generally see the proverbial cup as being half-empty, I can see you worrying, “Does that mean I’ll have to wait even longer than 90 minutes after my appointment?  And then have less time with my doctor!?!”

My best guess would be that if you’ve got a relationship with a specialist, it won’t change much, if at all.  The ones who will have to worry are the newly diagnosed who just figured out why a specialist matters and the 32,000-plus families that don’t know that they’ll be hit with the freight train of a myeloma diagnosis in the next year.

We, as a community, need to figure out how to deal with some of the predictable consequences ahead.  It’s important to all of us because the more people get the right treatment when they need it benefits every patient in the world.  It’s the kind of real-world evidence we need to share.  Now.

How might we help make the rest of the glass full?  I have three suggestions I believe can maximize the opportunities for our growing, living, healthy, optimistic, and realistic community; ideas I hope every member of our community will consider internalizing.

Patient education

The HealthTree Foundation exists for one reason: to engage patients in the treatment of their diseases and the achievement of cures.  The desire and need for education is the key needed to enter the wide range of offerings we have, geared to as many ways of learning as we can muster.

Why does it matter to each patient?  Simple.  Years ago I would have summed that up with something like, “because every minute of your life matters.”  Now I would amend it to, “because every minute of your quality of life matters.”

The best treatments for today and tomorrow are more geared to living than survival.   

One of the consistent frustrations of myeloma specialists and physicians is that they have to spend so much time explaining basic concepts to patients.  Ironically, this time spent also underscores why patients think so highly of their physicians, i.e., “I can’t believe how much time she spent with me explaining what myeloma is and what the next steps were!”

But here’s the rub: if you’ve just been diagnosed with a cancer you’ve never heard of, you want your physician to spend that hour with you.

Imagine instead spending an hour learning about the basics for the first time.  Or being given a choice between being guided by a nurse with information from the best experts about the basics of the disease or doing so at home to prepare for your next visit.

That could lead to thirty minutes of quality time discussing your treatment options and deciding what is best for you?  If you could do it all over again, which one would be more valuable to you, a better use of time for everyone involved or that someone spent an hour with you on something you could probably have learned more from by investing the same amount of time?

You couldn’t do much better than watching Dr. Morie Gertz’s Weeds in the Garden introduction to myeloma, perusing other Round Table program about Why Physicians Are Optimistic About Newly Diagnosed Myeloma, or even watch specific HeathTree University lessons or Community Chapter programs.

And if you want to do better, there’s another really good reason to consider maintaining a HealthTree Cure Hub profile than tracking your disease, improving your interactions with your health care team to achieve your best outcomes, or contributing your data anonymously with researchers around the world for years to come.

It’ll save you time.  And make the time you use for your health much more valuable.

In a world where there will be many more people like you clamoring for the same time with your health care teams, using your time in the clinic more wisely will be almost as important as making decisions about your therapy.

For some of you, the better you get at this—and the simpler it becomes over time—will make you think more about other patients and how you connect to them.

I’ll consider a couple of ideas about that right here next week.

The author Greg Brozeit

about the author
Greg Brozeit

Greg Brozeit has been with the HealthTree Foundation since 2015 when he began volunteering for the Myeloma Crowd.  Prior to that he worked with Dr. Bart Barlogie and the International Myeloma Foundation, inaugurating many myeloma patient advocacy and education programs.

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