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Partner Spotlight: Malecare

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Published on June 6, 2016

Shining the spotlight on our partner, Malecare, Andrew Schorr interviews Malecare's Executive Director, Darryl Mitteldorf. Learn more about this one-of-a-kind group that lives by the words "Connecting locally. Treating globally."

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Transcript | Partner Spotlight: Malecare

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 in San Diego, and I'm joined by a fellow who has been a leading patient advocate for so many years now, Darryl Mittledorf.  Darryl is in New York City on Delancey Street.  He's an oncology social worker by training.  Certainly, like so many of us, he's had cancer in his family, and back in, was it 1998, Darryl, you formed Malecare, which has been very devoted to people dealing with prostate cancer.  First of all, thank you for being with us, Darryl. 

Darryl Mittledorf:

Thank you, Andrew.  It's really great the work that you're doing and great that we can participate and support it. 

Andrew Schorr:

Thank you.  Darryl, so tell us about Malecare.  What is its purpose?  What is its mission?  What are you trying to accomplish for men?  

Darryl Mittledorf:

So Malecare started I think 18 years ago now, in 1998.  It started as a single prostate cancer support group here in New York City and has grown nationwide, has grown online, and is now a multinational organization with partnerships throughout Europe and Oceana, New Zealand, Australia and also South America. 

So a unique thing about Malecare is our focus on underserved populations.  We started looking at gay and bisexual men in prostate cancer and realized that they find themselves in pretty unique positions.  Most of the men with prostate cancer understand the sexual challenges that treatment presents around prostate cancer, impotence and also incontinence.  Well, imagine the disparities in psycho-social navigation around that for men who enjoy sex with other men.  Even heterosexual men who occasionally will have sex with other men find themselves challenged by a diagnosis of prostate cancer.  

Then around 1998, 2000, started looking at the African-American community where within our support group network we were finding younger black men presenting with higher grade disease, and through our initial investigations and our marketing other people's research we started to identify the unique disparity that African-American men face who had prostate cancer where they literally die at twice the rate of us white men.  You know, it's an extraordinary disparity. 

Then we started looking at the idea of advanced-stage prostate cancer as its own unique cohort, and I think that's what Malecare has become known for, for understanding prostate cancer as a disease that you don't die from prostate cancer, you die from advanced-stage prostate cancer.  And that's been a true game-changer both in the research community and in the patient community, and Malecare as an organization is entirely responsible for that change.  We're quite proud of that. 

And I work with other psychologists and social workers, all of whom are diagnosed, some with multiple cancers.  My dad died from prostate cancer.  You know, it's a big part of our lives.  And I suppose that represents another unique part of Malecare, that we have skin in the game.  Very few organizations, well-run organizations by professional managers, but very few of them can actually say that they're patient organizations, and we clearly do.  

Andrew Schorr:

Right.  Well, we're delighted over many years that Patient Power has been partnered with you, and we are particularly focused on advance prostate cancer, too.  And there have been a number of new drugs, different approaches.  I'm in San Diego.  The American Urological Association is having their conference about two blocks from here, and I'm going to go, and maybe you'll be there, too. 

You mentioned about different populations and I know often—I mean, there wouldn't be new drugs, the new approaches unless there were clinical trials.  I know often with certain populations clinical trials have not been offered to them or they haven't been aware of them, so it seems like that's a challenge, too, is have people understand research opportunities and just maybe the latest landscape that could lengthen their lives.  Would you agree? 

Darryl Mittledorf:

Yeah.  In fact, that's quite spot-on to our recent work over the last two or three years in sort of understanding clinical trial opportunities as treatment opportunities, particularly for underserved populations who don't have payers or insurance supporting them in the course of their care. 

It's a shame that clinical trials have the word "trial" in them, you know—and even the word "clinical."  I mean, these are opportunities to feel better and get better by state-of-the-art treatments and molecules that nobody's ever put in their bodies before.  The risks of those are really not that much dissimilar to the risks of conventional treatments.  And the opportunities for not so much cure but for better care are quite similar to conventional treatments. 

We find that clinical trial managers still to this day in 2016 don't get how to market to underserved populations or subpopulations.  We understand that.  We listen.  We are those populations.  I mean, I may not physically look like it, but my colleagues do—I could drag them in here.  But certainly our patients do.  And we're a fairly large organization now.  I mean, we have over 100,000 people that use our services.  And then if you include our worldwide services, understand post-border navigation of treatment opportunities, you know, a lot of clinical trials are conducted in countries like India, are conducted on migrant and immigrant populations in European regions such as the Caucuses or the Central Asian states. 

To be able to understand how patients fare in all of those, you know, territories is important for us in the United States since, you know, when you get down to it men are men, albeit we all have genetic and economic and social and racial differences.  To be able to coalesce all that understanding to one local opportunity of treatment is our goal for 2016 to '17. 

Malecare a couple of years ago started the Global Prostate Cancer Alliance, which is a coalition 37 like?minded national organizations around the world.  And through that organization, we got local opportunity to have conversations and understand the dynamics of patients that really have no connection at all is going to help us find ways to better treat people everywhere in a way that's affordable and accessible. 

And that's a big part of what we do as well, is to help researchers know that affordability and accessibility is just as critical as creating new treatments.  We're not interested in treatments for the Donald Trumps of the world.  We're interested in treatments for the 99 percent. 

Andrew Schorr:

Right.  Right.  Well said.  Well, it's such worthy work that you do so that everybody, like we like to say, gets the care they need and deserve.  They know about it, they have access to it.  If it's a research opportunity that's discussed with them and they can consider it wherever they may be, bringing people together. 

So just put in a plug for the Malecare website.  How do people connect with that? 

Darryl Mittledorf:

Sure.  So if you want to learn more about Malecare, connect with our support groups, if you know how to spell Malecare, it's M-A-L-E as opposed to M-A-I-L.  Simple to find, Malecare.org, also .com and .net will get you there if you forget the org part.  I urge people to join our online support groups, which operates under the theme of connecting globally, treating locally.  One of the really wonderful aspects of our online groups is that any English?speaking person no matter where they are, connects online.  So you can be in the most rural community anywhere or an Internet cafe in the Andes, Peru, and be talking about the latest treatments at Cleveland Clinic or Sloan Kettering and then share that information with your local doctor and see how you could integrate it into your own care. 

 

Andrew Schorr:

Well, the bottom line for people watching is you are not alone.  You're dealing with prostate cancer, maybe it's spread, it's advanced, there are options changing, and there are other people who are talking about it, and with leadership from Darryl as executive director and the team there at Malecare making a difference now in the coalition now worldwide.  Darryl Mittledorf, thank you so much for everything you do, for your leadership in this and for joining us today. 

Darryl Mittledorf:

Thank you, Andrew.  And thank you for the good work that you do, as well. 

Andrew Schorr:

Thank you so much.  Darryl's in New York, I'm in San Diego, and people are around worldwide to be part of the prostate cancer community so that everybody can get access and hopefully get the best for them. 

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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