Danielle Doheny:
Thanks so much, Heather. Just a little bit about me. My name is Danielle Doheny. I'm the director of public policy and advocacy at the IMF. Before working at the IMF, I worked on Capitol Hill for quite some time, and my family was shook by myeloma diagnosis. My dad was diagnosed in 2012, and I've always been an advocate at heart, but I wanted to shift my career to helping people who were going through situations like he was. But I really think getting involved can be something that can really heal the soul of a person whenever you go through something or your loved one goes through something and you don't want to see that happen to someone else. Just sharing your story is really all that entails too. And to begin my presentation, I just wanted to talk a little bit about what it is we're advocating for, what it is we do exactly.
We do do advocacy globally, but I do it in the U.S. And how we decide what we're going to advocate for, we ask ourselves three questions. The first one is, will it help more people get access to care? And then the second and third kind of go hand in hand. Our info line gets calls every day about financial barriers, so we want to address those as well. And then the last piece is, will it help advance myeloma research? Because this is a disease that does not have a cure yet, it's extra important for our population that we work to advance research. And just some examples of some of those policy areas that we work in and that access to care, a lot of those are the pieces that Susan covered in her presentation, a lot of the insurance barriers there in one and two.
So the first one listed there is step therapy protocol. So what that essentially is an insurance company saying, "No, you have to do this test and this test and this test or take this drug before you can have this drug." And we hear from providers and patients alike that that's a big barrier for them to getting the care they need. Sometimes it can really delay things for them. The next piece I wanted to highlight here is telehealth and telemedicine. We want to make sure that everybody has access to a myeloma specialist, and sometimes that's really an integral piece of the puzzle there. And then in that eliminating financial barriers piece, one area where we're a leader in Washington is oral parity. And what that really is just ensuring that the patients are not paying more for the drugs that are taken at home in a pill form than they are for those drugs that they're getting in office.
We hear from a lot of people that that's a huge barrier. They're getting slammed with bills for those drugs they're taking at home. So we lead a coalition called the Coalition to Improve Access to Cancer Care. So we want to ensure that really the community is coming together to share the stories of patients. It's not just myeloma patients, it's really the many, many people in the cancer community having those issues. And then jumping over to bucket three, an example there is just cancer research in general. We do several areas there. The NCI, National Cancer Institute is one area, and then clinical trial access also falls into that bucket.
But I think the most important thing today is to just show you what our advocates are doing to advance these priorities. We have really worked to grow our program over the past couple of years to include the advocates. It used to be us as the IMF going into Washington and sharing maybe anecdotal evidence plus data. But coming from the position of a former Hill staffer, that's not where change is made. The change is coming from the people and people who look and come from those communities, people who really just embody the American spirit. So we have an advocacy masterclass where we train up advocates. It's a 12-week online program, self-paced. And many of those graduates of the masterclass have joined us in Washington D.C.
These are just some of the folks who have come in the past. And I like to put people in the slides that are here. So we've seen a few little celebrities around the room who've done this for us, but we like to bring people twice a year. For the IMF once in March, and that coincides with Myeloma Action Month. And then again in September, we'll be bringing folks for Blood Cancer Awareness Month. And what they do, they really just share their story and connect it to maybe one of the IMF's policy priorities or something that really speaks to them that's going on in D.C. There's no prior experience necessary. You don't have to be someone that's some political person in any way. You just have to be someone who cares and someone who has a story. And everybody in this room has a story, whether it's the person you love has this disease or you have it, or if you're a medical professional, you serve people who have myeloma.
And just as an example, I wanted to have one of our advocates share why they do it, what attracted them to it and what the experience has been like for them. I wanted to highlight Richard Armstrong right now and just hand the microphone over to him to talk about his experience coming with us.
Richard Armstrong:
Great afternoon everyone. I'm Rich Armstrong. Richard is the people that don't know me well and my mom when she's mad at me. So Rich is fine. I'm not that formal. But I have to say that I'm sad that we're all affected by myeloma and that we didn't choose this, but this is the life we have. I'm grateful that we've come together because I don't know how you do this alone. I don't know. I was diagnosed the height of the pandemic a little over five years ago and I could not imagine what the life of a myeloma patient would be, was going to be. At three days I was circling a dream, light chains over 43,000, at a five drug induction and I'm still on a clinical trial maintenance. I got my monthly treatment coming up on Tuesday. And so I'm saying it to say that I look at this and I have, including my name, nine sort of attributes here and it's a miracle.
I probably shouldn't be here, but I have to say that the International Myeloma Foundation, before I got involved with advocacy, I just needed information. And I remember just going onto the website and ordering this packet of just great information so I could learn about the treatment. I was on a five drug induction. "Oh, okay. Well, what are these things?" And so when it was kind of sort of realized that I was going to kick the can down the road, I was looking for something to do with my life. Literally, "Okay, so what am I going to do? I have to find a new life." And one of my great colleagues just pulled me in. He said, "I think you would be great to do advocacy work." And so I've been really fortunate to do advocacy work as a part of some of my life after myeloma diagnosis, coaching and advocacy.
Danielle talked about some of the priorities and it's interesting because I think one of the big priorities for me is clinical trial modernization, because everything that comes through, all of the drugs, all of the treatments have to be vetted by clinical trials. And so I think the more we have good clinical trials and access to clinical trials, that's going to help to accelerate the potential for treatments and cures. And so I'll leave you with this. A lot of people say, "Well, your voice matters in Washington D.C.," and it really does. But my friends and family and everyone that knows me are pretty frustrated with me at this point because I feel like, to be a good advocate is independent of even the things that I do in Washington D.C.
And so I've gone to Washington D.C. and I've shown them that I have... So I look okay now. Thank you. I look okay. It's amazing. A lot of us, we're challenged by myeloma, but we don't look like the disease and that's a blessing. And so when you show up in Capitol Hill and you're telling your story, there's a tendency for them to kind of sort of roll their eyes. And I don't know what made me do this, but during my worst, I have photos. So I've got spine surgery and catheter in my neck. I got a nice little photo when I was getting a bone marrow biopsy. And so I take this collage and I have all the ask on there in my name and I'll hand it to them, and that becomes very impactful.
But besides Washington, we all have a representative. We all have a government representative, all of us. And so these bills, we can actually contact our representatives and be impactful. And so I just want you to think about that. The advocacy is, yes, it's Washington D.C., but all of us, we can write a letter to our representative and say, "Hey, I need you to support clinical trial modernization." Any of these asks, we all can do that. And in that sense, all of our voices are equally powerful. So thank you so much for listening to me. Hopefully I didn't bore you, but I wanted to get that out there.
Danielle Doheny:
Thank you. And Richard is right. We're trying to make this so there is something for everyone. If you're somebody who's like, "I don't want to come to Washington," we are trying to really build up our digital system so there's an option for you just to click an email and it sends... Maybe Richard is in Washington sharing his story, but you click the button and they get 100 emails about what he just talked to them about. That's really, really powerful. So you can sign up outside with me, grab a business card. We really want to make this so that there's something for everyone. And we are preparing for our next master class. So if anyone would like to take it, we would love for you to join us.
And when we present, I also really like to show that advocacy matters and just maybe a success or two over the past couple of years. This particular one, I wanted to show that, prior to our advocates coming to D.C. last year, we were pretty afraid of what the cancer research funding spectrum would look like. But if you look here, there were supposed to be very, very large cuts to cancer research. Our advocates came, advocates from really almost every disease came to D.C. and said, "That's not okay. We do not want to see cuts to research." And we ended up getting increases in funding as opposed to cuts. The advocate voice was heard.
And I just wanted to show some photos from our last Hill Day. In March, we just had a really wonderful time. And when we were there, we did talk about clinical trials and clinical trial modernization. We talked about research. We talked about actually prior authorization, what was just talked about by Susan, that was an issue. We talked about having timely decision-making periods for that because we've heard from a lot of people that they have been waiting a very long time to hear back from the insurance companies. And we were able to visit over 40 different offices, a small group of 24 people. If you do end up deciding, "Hey, this sounds like something I'd want to do," you would not be going in alone as someone who has never done it before. We always like to pair a patient or a care partner who have done it before with somebody who has never done it before and maybe is a little bit nervous.
It was not the case for our first Hill Day. We were all nervous that day, but now we have a couple hundred trained advocates and quite a few of them who've made it to Washington to help us out. And I just wanted to leave this here. That is a way that, if you send an email to that [email protected], you can email me and it'll come to me and my team. We're just really excited to be growing this program with advocates, and the patient voice is what makes the difference. So thank you so much.
