Published on January 16, 2019
How can patients find purpose and contribute to progress in multiple myeloma care? What does it mean to be a patient advocate?During this Myeloma Patient Café, a panel of devoted patient advocates including authors, support group leaders, clinical trial steering committee members, political and research activists, fundraiser and volunteer participants and more, discuss their advocacy work and share how people can get involved to make a meaningful impact on the lives of others in the cancer community. The myeloma patient panel includes Patient Power host Cynthia Chmielewski, patient advocates Jack Aiello and Eric Hansen, myeloma survivors Matt Goldman and Reina Weiner and Jennifer Ahlstrom, founder of Myeloma Crowd. Watch now to learn more about advocacy opportunities for myeloma patients.
Produced by Patient Power. We thank AbbVie, Celgene, Sanofi and Amgen for their support.
[Editor’s note (11/27/2018): Eric passed away in late 2018. Eric was a devoted husband, father and beloved member of the myeloma community.]
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Transcript | Advocacy Opportunities for Myeloma Patient/Care Partners: The Benefits of Paying It Forward
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.
Hello, everyone and welcome to the Myeloma Patient Cafe, which is being produced by the Patient Empowerment Network. Today we are going to be speaking about advocacy opportunities for myeloma patients and caregivers and the benefits of them.
I am delighted to be here today with a panel of superstar advocates. We have authors, people who raise funds for myeloma research. We have support group leaders. We have people who are sitting on steering committees for clinical trials, so we have a gamut of myeloma experts with us today. And before we start our actual discussion, I think it will be best if we all take a few minutes to introduce ourselves and talk a little bit about our advocacy work. And I will get started.
My name is Cindy Chmielewski. I live in Lawrenceville, New Jersey. I was diagnosed with multiple myeloma in 2008, and at the time of my diagnosis my myeloma was kind of behaving badly, and I did not respond to induction therapy or a stem cell transplant, so I was almost forced to retire from teaching. But luckily some of the newly approved FDA therapies finally put my myeloma into a very good remission. As I was happy about that, but then I was feeling—once my myeloma was under control I was feeling this emptiness inside that there was just something missing. I no longer had a purpose in life.
Prior to my diagnosis, I had been teaching for almost 30 years, and I knew I had to find a way to use those skills to make a difference in the lives of others. I wasn't quite sure how to do that. I never heard of a patient advocate before. I really didn't know what patient advocates were, and I guess maybe part of that was because as time went on I learned that advocacy can mean many different things to many people.
Some people use their advocacy skills to educate their communities and patients about their disease. Other people advocate by raising funds for research or patient services. There are political advocates that share their experiences with the disease, with cancer to advocate for cancer-friendly research, and there are also advocates out there who are working with researchers, research advocates advocating for clinical trials.
So I started my advocacy work by volunteering. I volunteered at the LLS, and shortly thereafter I became connected with the International Myeloma Foundation and started doing some political advocacy advocating for what was then the oral chemo parity bill, and I was able to go to Washington, D.C. a few times to talk to my representatives, and I also had some local meetings.
And then I was fortunate to attend the AACR, which stands for the American Association of Cancer Research. They have a meeting each year where they have a program called the Scientist (-Arrows) -Survivor Program, and as part of that program I learned about research advocacy, which interested me very much, and I was able to connect with other research advocates from across cancer types. And I knew that was something I wanted to be part of, but I didn't know how.
So the first thing I did was I joined an IRB, which is the Institutional Review Board of my local Cancer Institute where I was being treated, and that opportunity led me to other research opportunities. And more recently I was able to review some NCI grants, which was pretty cool.
And finally one of the things I get the most pleasure out of is using social media to advocate, to educate others about myeloma, educational opportunities, clinical trials, just anything myeloma. So that's my advocacy work in a nutshell.
And let's learn a little bit about everyone else here. Just tell us your name, maybe where you live, when you were diagnosed and a little bit about your advocacy work. Jack, do you want to start?
Sure. Thanks, Cindy. My name is Jack Aiello. I live in San Jose, California. I was diagnosed with myeloma 24 years ago. And one of the important things to me when I was first diagnosed is somebody directed me to the Bay Area Myeloma Support Group, which was actually founded in 1991, and that really helped educate me. So I've been around a long time with myeloma.
I have been involved with many of the advocacy functions that Cindy mentioned. For example, I now facilitate that San Francisco Bay Area Myeloma Support Group. I've been both to Washington D.C. and Sacramento, our state capital, to advocate for a public policy on various bills that have come up. I have probably fundraised a half-million dollars in the last 14 years or so.
And more recently, I'm pretty well connected on the research advocacy side. I sit on a myeloma steering committee for the NCI. I am part of SWOG, which is one of the cooperative groups that develops trials on their myeloma committee. Locally I meet with the Stanford Review Committee, which looks at proposals in terms of whether Stanford wants to be involved in them or not. So that's my story, and I'm happy to follow up if you have additional questions, Cindy.
Okay. Maybe we will as we go along. Just get backgrounds on everyone.
Jenny, how about you sharing a little bit about yourself.
Thanks, Cindy. So I was diagnosed in 2010, and I was younger. I know a lot of us actually may have been younger when we were diagnosed. After I went through treatment and finished my maintenance therapy, I just saw a lot of gaps that existed for patients. There were things that I wanted as a myeloma patient that I didn't see, and there were great organizations already doing really good things and amazing work, but I just wanted to address those specific things.
So I started the Myeloma Crowd, which is part of the Crowd Care Foundation and the Crowd Care Foundation and started really understanding clinical trials. So my first question was why aren't patients joining more myeloma clinical trials? Because we were looking for ways to help accelerate this cure, and I realized how difficult they were to join and how confusing they can be for patients, so we started the Myeloma Crowd radio program interviewing doctors.
Then we expanded and built a website helping patients find relevant myeloma information that is accurate but in patient?friendly language. That grew to some live educational meetings. It also grew to a software tool that we were using that we developed called HealthTree that also helps patients, because we realized that a lot of patients are being seen in a general oncology setting, and sometimes their doctors aren't as up to date on myeloma as they could be by going to a myeloma specialist. And then there's data that shows that going to a myeloma specialist can help you live longer.
So we wanted to bring that—we didn't like the disparities that we were seeing in the types of care, and we wanted to help bring expert opinion to everybody. So that's one of our big projects.
And in order to help share, and what's something we can talk about later, is a myeloma coach program that we'll be introducing in a couple weeks. And that's to invite more of us like here on this panel to become educated by myeloma and to sit down and help other people at the same time.
That sounds great. I'm interested in hearing more about the myeloma coach program. Something new.
Eric, how about a little bit about you and your advocacy work.
Yeah, good morning. Well, I'm Eric Hansen, and I was diagnosed in 2012, totally blindsided, had no clue until the diagnosis. And that was as we've all come through this we all realize that's a devastating experience, but what pulled me out of a funk there was getting in touch with a couple of myeloma patients who had been going well for years. And so while I was initially told to expect three years and that they wouldn't be good years, suddenly I'm talking to people with six years in and working out every day and traveling and so on.
So that really set me up to become an advocate myself, because, as I've learned since, a lot of people when they're diagnosed tend to have two roads to go down. One is to withdraw and just hunker down, and the other one is to get involved and get up to speed, up their game to start getting into this. And so I've been writing articles, going to ASH. I've testified to the legislature on the drug parity bill and volunteered to talk to anybody about it that suddenly finds themselves in our particular situation.
There are only two of us up here in Juneau, so support groups aren't really a thing, but people now do contact me and want to know what there is to know. And I always them the same kinds of things that all of you are talking about, and that's to get connected and start looking at your lifestyle and be sure you're involved with a specialist at a research center if possible.
And learn the language of myeloma, because I had never heard of things like bortezomib (Velcade) and daratumumab (Darzalex) and on and on and on, but it is a new language. But it is very important to speak it I think so that you can converse with your doctor in making decisions about future health decisions and so on. So I really believe advocacy is crucial—and knowing where the right websites are.
I always point people to Myeloma Foundation, Patient Power, Myeloma Beacon. I check those all myself every day. I follow Cindy's and Jenny's blogs and post every day. And it's hugely helpful. And so I believe in it absolutely and want to continue doing it as much as possible.
Thanks for sharing, Eric. One thing we maybe we need to come back to is you were talking about is connections, and that's something we can talk later about as a way for others to get involved in advocacy work is becoming mentors either like in the First Connection program or the 4th Angel. That's a really easy way to get started in the area of advocacy. So maybe we'll come back and talk a little bit more about that too.
Reina, can we hear from you?
Sure. Good. Hi. I'm Reina Weiner. I live in Asheville, North Carolina now. I've been here for a couple of years, and my myeloma story was a longer one in that I had a very smart internist who back in '99 diagnosed me with MGUS, and I had followed it for years until I actually had active disease in 2012. So it's been a long journey.
But my background professionally is I've been an oncology representative for years, and then I became the National Oncology trainer and then a nursing instructor, so my job was to talk about clinical trials every day. So this was like, wow, guess what? Now I get a chance to participate.
So my first trial was over at the National Cancer Institute back in 2012. That was CRD, now KRD, and it was very successful for me. And then another trial comparing filgrastim (Neupogen) too for apheresis, collecting the cells. And then, then what? Then I had another trial at MSK—oh, but initially—that was lenalidomide (Revlimid), but initially when I went to the NCI, because I asked the doctor who was covering me who was a myeloma specialist who never even mentioned clinical trials to me, and I said is there something going on at the NCI? Because they used to be one of my customers. And he said, wait a minute, flipped around, put his computer on. He said, yes, as a matter of fact there is.
And then I was in smoldering disease, so I joined this observational trial, no drugs, just watching and waiting to see what was going to happen next. Anyway, and then things changed and so forth. So anyway it's been four clinical trials, so I'm a huge advocate of trials, because I believe that's the only way to move medicine forward for myeloma and all diseases in general.
And how do I advocate? Well, I do speaking to anybody who will listen and even people who won't, and I have an e-book on my website called “The ABCs of Trusting Yourself,” have become an empowered patient. I'm all about asking for what you need, very politely but still very directly because otherwise how do you know. And then my new book, as I call it, my real book, is my second book but this is called “Trust Your Doctor But Not That Much.” “Be Your Own Best Healthcare Advocate” —that should be out in January.
And I just believe that that's really important to advocate for yourself. Like today I was in Costco because that's very important—ha—and while I was in there my phone rang, and it was a friend saying a friend of a friend just was diagnosed with multiple myeloma. He's an old friend of mine who has known my story for a long time and said this newly diagnosed patient is having a lot of pain. You didn't have any pain. I said, well, that's because I knew about my journey much earlier than many people do. So I said, sure. And that happens, you know, every now and again.
I feel like people are somewhat reluctant to call somebody they don't know to share that information, but I hope to help where and when I can. And I have to say, I'm humbled by what everybody does here, everybody who has been so actively involved that it's seriously gratifying. So thank you.
I did go with my husband to Raleigh, which is about four hours away, to try to get them to consider oral drug parity and, boy, I'll tell you what. They were so resistant I even bought my bottle of Revlimid to say, see, this bottle costs $16,000, just to really give people the visual—but anyway kind of didn't do too much.
So I try to stay really positive, stay active. I did have a transplant about a year-and-a-half ago, and now I'm on a maintenance treatment of carfilzomib (Kyprolis), which to me seems like my drug. I've been on it mostly six years, and so far so good. So, yeah. We'll see—you know, I do today and then I do tomorrow, and we'll see what happens after that. So thank you.
Thank you for sharing all your advocacy work, and I think you said something key too is people need to learn first to advocate for themselves before they can start advocating for others, and sometimes that's a learning curve for many people, so thank you for sharing that.
And, Matt, can you tell us about your experiences? I think you did some Moving Mountains for Myeloma.
Sure. Thanks, Cindy. So I am Matt Goldman. I live in Long Beach, California. I was diagnosed May 2nd, 2011. I was 49 at the time. I had been sick for probably three months leading up to my diagnosis, and they were testing me for just about everything except cancer and definitely not myeloma. Eventually I was hospitalized. I was just so anemic and in the hospital for about a week. My kidneys were starting to fail, and we got the diagnosis. I've been doing treatment ever since then, seven-and-a-half years.