Published on June 18, 2019
How do multiple myeloma patients become advocates? What does advocacy work entail? During this Patient Café segment, a panel of patients living with myeloma, including Cynthia “Cindy” Chmielewski, Jack Aiello, Matt Goldman and Jennifer Ahlstrom, share how their advocacy journey began, tips for getting started and where to find advocacy opportunities. Watch now to find out more.
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Transcript | How Can People Get Started in Patient Advocacy?
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So would anyone like to share how they began that advocacy journey, if there were any challenges that you had early on, how to work through those challenges? Any words of wisdom on how to become an advocate?
Well, it was—becoming an advocate was sort of fear?based in some senses. You know, you feel like with myeloma that the clock was ticking, and I think for me it helped me overcome barriers or fears that I might have had before. I was willing to do things because I have this cancer that I wasn’t willing to do before, so that kind of propelled me to do interesting and different things and take risks where I wouldn’t have before.
What we’ve learned is that there are a lot of people—this summer we travelled through 50 cities across the United States and we met all sorts of myeloma patients in all different situations, and we realized that there are a lot of people who want to give back. They’re not quite sure how, so that’s why we’re developing this myeloma coach program because we want to be able to train them in how to become a myeloma advocate. Where to go for, like Matt was saying, some of the best resources? At which sites should you maybe not go to that might not be as current or relevant? And just going through that process, it’s work to do it, but, like Jack said earlier, you do it a little bit at a time.
You go to a meeting, you go, oh, I never knew that myeloma had its own genetic features, so what’s that all about? And so you start learning about that. And then you go to another meeting and you say, well, what is my monoclonal protein because that’s not even in my patient portal. I’m not really following that number.
So it’s just, it’s layers, and you pick them up over time. And it’s okay if it’s slow. It’s not a problem. But just do a little bit at a time, and then look to places who can help train you also in how to become an advocate for yourself and for others.
And that was the hard thing in the beginning. I knew I wanted to give back. I knew I wanted to do something and had the skills to do it, but I didn’t know how. So I mean that’s why I started by volunteering at the LLS. I went to a meeting actually that they were presenting, a local workshop, and after the meeting I started talking to the patient services director and asked, I said, I really need to do something. Can I come and volunteer for you?
And she said, of course, we’re always going to accept volunteers. And while I was there that’s when I—and in the beginning I was just stuffing mailers and putting tags on information booklets. Like just—I was doing office work. I wasn’t really doing any education or (?) Inaudible.
I found out about the First Connection program and asked to be trained as a First Connection mentor. In the beginning there was even a learning curve that were locally doing the LLS First Connection program because they told me I needed to be out of treatment for two years before I could start mentoring. So I had to let them know that for the most part myeloma patients will be out treatment because we’re in maintenance therapy, and that was a learning curve for my local LLS. But they saw that I was capable of doing mentoring, so I did some mentoring there. And I just think there’s connections. You just ask people, well, how can I get involved?
For me in the very beginning it was hard to find that path. Where am I needed? I think it’s also important for you to find that right path for you. For me it’s education and talking to others and helping them understand their myeloma and what resources are available for them. Although I do some fund?raising each year with our support group. The Philadelphia Multiple Myeloma Network does a 5K each year where we’ve raised over $100,000. That’s not where I feel the most comfortable. I’m not comfortable raising funds, so I kind of steer away from that type of advocacy.
I didn’t think I would be okay with political advocacy but I started small, I got trained. And people who may not even want to do that face?to?face meetings with their legislators or senators may be able to sign up like in the IMF or the LLS, or any other cancer organizations have news alerts where they have alerts that say send your senator this letter to promote this, you know, more funding for cancer research or oral parity for cancer drugs.
There’s just so many different ways that you can get involved, maybe very basically at the beginning and very small, take baby steps.
Anybody else, how they got started in that advocacy work in the advocacy community?
I’ll jump in here. I think this best—your question is a really good question, and Jenny made a really good point. I think you start slow and you do what you feel comfortable with in terms of being an advocate, but I think when you get sort of at a certain point with your diagnosis your comfort level or what you’re comfortable with changes.
To speaking personally I know before I was diagnosed I probably wasn’t the best person—and you could ask my family or my wife about this—I wasn’t the best person about sharing how I’m feeling or what I’m thinking or anything personal. That was not what I was about. And the longer I’ve had myeloma the more okay I am with sharing my story and sharing my experience because it’s important to share.
I think we all have—everybody, not even just us on this call, but we all have a story and we all have a story to tell and there’s values to all of it. So it took me a while to get comfortable with that, with opening up, but I think it’s important. And I think it’s important just for me also.
I think also when you’re diagnosed your priorities in life change and having a new car every couple years and sort of all those sort of things that seemed important don’t seem important, and you want to do something. You want to do something that has some value, and you want to be able to give back. And being an advocate and just speaking at whatever level I think allows one to feel like they’re contributing and giving them some sort of self-worth and self-value.
So both you and Cindy and Matt mentioned LLS, and I think that’s a great place to start because they can—they love to have people in the office help out as volunteers, and you can get involved in programs like First Connection and working with their Information Resource Center and such. When I had to go on medical disability I contacted my local LSED as well as the founders of IMF and MMRF and said I still had a head on my shoulders and I’m happy to volunteer. And those organizations and Jenny’s Myeloma Crowd are happy to have people help out in any capacity.
And you begin to learn more about your disease in doing that. You begin to meet up with other patients. You might get asked to participate in public policy events. You will certainly get asked if you want to be involved in any kind of fund?raising and such. And so it is a great way do that and get involved with your local support group maybe to give back. And as a result you are able to also continue to get more educated about your disease.
Good points. I know the LLS was very good to me because it started building per se my advocacy resume. There were things I wanted to do in the future. I knew I wanted to be part of the AACR Scientist (? Arrows) ?Survivor Program, but I knew that was an application process, and I had to talk about what advocacy work I had done.
Well, if I had no advocacy work I was doing I couldn’t move on to the next level, and the LLS gave me a great place to start with their First Connection program, their Light the Night, just anything like Jack was saying. I think another place to start too is I know Patient Power, which is now starting a patient engagement program where there are Patient Power ambassadors who may go to different events to share their story. So you may contact Patient Power to see if you want to be one of their Patient Power ambassadors and share your story with others to help inspire them.