An Advocate's Perspective on the Latest Developments in Myeloma

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Susie Novis is the co-founder of the International Myeloma Foundation (IMF), one of the leading advocacy groups in the fight against myeloma worldwide. After losing her husband to the disease, Susie began traveling the U.S. and the world to raise funds for research and programs and to  educate patients, family members and healthcare professionals. Patient Power is proud to call the IMF a partner. In this interview at the 2012 American Society of Hematology (ASH) meeting in Atlanta, she explains how we are "turning a corner" in myeloma with more good things to come.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello and welcome to Patient Power.  I’m Andrew Schorr on location at the American Society of Hematology meeting in Atlanta.  I’m standing with an old friend, Susie Novis, who is one of the founders and the president of the International Myeloma Foundation that’s done so much good all around the world for families affected by myeloma. 

Susie, this meeting is sort of action central. 

Susie Novis:

Absolutely.  Every year we look forward to ASH, and we know that it’s going to be an amazing meeting.  We also know that we better get ready to put our running shoes on and get going because there’s just so much happening. 

I have to tell you, the first ASH I ever went to was in Denver many, many years ago, early 1990s, and it was small.  And just to see how ASH has grown, I think is really exciting because it sort of—the IMF almost mirrors the growth, obviously not on the same scale, but as ASH grew so did we.  It’s a meeting that is wonderful because there are so many more people working in multiple myeloma that makes it a really outstanding meeting for us. 

Andrew Schorr:

People working, and those benefits are paying off.  How do you see it for patients today?  Obviously, it’s not just one version of a disease. 

Susie Novis:

Right. 

Andrew Schorr:

There are different stories. 

Susie Novis:

Right. 

Andrew Schorr:

But just generally, which way is the wind blowing, if you will? 

Susie Novis:

I think how I’m seeing it is that when more and more people are working together in a collaborative way we’re going to have much more progress, and I think the progress that we’ve seen over the past few years is almost like one of those things out of Star Wars where whoosh. It’s like you’ve jumped ahead light years. 

It also means for patients that receiving the diagnosis of myeloma, while devastating, it’s not the death sentence it once was, and that is huge.  Yes, we’re still losing people to myeloma, but I have heard the word “cure” actually bandied about, and so that’s very, very good news. 

Andrew Schorr:

All right.  Let’s talk about the focus of your organization.  You are on the road all the time. 

Susie Novis:

All the time. 

Andrew Schorr:

Devoted, nationally and internationally.  In that spirit of making progress and people coming together, do you feel that happening now where there’s worldwide communication, worldwide education? 

Susie Novis:

Yes.  Like never before.  And you have to understand that when we decided to start this organization it was three people, Brian Durie, Brian Novis and myself.  And so it was a Scot, a South African, and I don’t know if you know, but I’m an American, but from the very beginning it was always about helping people and working on an international level.  We were the International Myeloma Foundation from the start, so it’s only natural that we have travelled around the world to help patients, to work with clinicians, to work with nurses, because that’s the only way. 

It’s a global problem.  It’s going to take a global answer to find the cure.  We’re constantly moving because you never know where the next best idea is going to come from, and there are people everywhere that are suffering from this disease, and we can make things better.  That’s definitely for sure. 

Andrew Schorr:

For our viewers, family members and patients—

Susie Novis:

Yeah. 

Andrew Schorr:

—obviously contribute if they can—

Susie Novis:

Yep. 

Andrew Schorr:

—but beyond that what can they do to play an active role so that we can all work together as a community? 

Susie Novis:

Well, I think that one of the most important things is that while we have done an amazing job of informing the world about what multiple myeloma is we still have only reached a certain percentage.  You can never tell the story enough.  We’re always reaching new and new people, but if you’re touched by myeloma, whether you yourself has it or a family member or a friend, when you get out there and you start spreading the word about multiple myeloma and, no, it’s not multiple this, it just helps people start thinking about, well, why are these diseases occurring more rapidly?  Why are we seeing a rise in cancer? 

It’s not just about finding diseases, it’s about creating a safer environment in which we can all live to try to start putting an end to these diseases. 

Andrew Schorr:

I can’t thank you enough on behalf of thousands and thousands of people worldwide for what you do.  You always seem to have boundless energy, and really I want to give you a hug, okay?

Susie Novis:

I want to give you a hug, too. 

Andrew Schorr:

All right.  Thank you.  Susie Novis, she and her team devoted, and for anybody affected by myeloma you have to just really thank them for all they do.  And as you heard, you can play a role.  And here, you heard about all the action.  It is very, very promising.  Let’s cure myeloma. 

Susie Novis:

And one last comment. 

Andrew Schorr:

Yes, ma’am. 

Susie Novis:

Okay.  If you want to know about multiple myeloma and how you can get involved and help, go to our website www.myeloma.org.  And if you have a question for our hotline coordinators dial 1-800-452-CURE.  Thanks so much Andrew.  This is a wonderful opportunity. 

Andrew Schorr:

Thank you.  And you are never alone. 

On location in Atlanta at the American Society of Hematology meeting and with Susie Novis with the IMF, I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on September 5, 2014