Advocacy Updates: Fighting for Myeloma Patients in Washington and Beyond

Danielle Doheny:
Hi everyone. My name is Danielle Doheny. I am the Director of Public Policy and Advocacy here at the IMF, and I'm just going to present to you today on a little bit about what's going on in DC and then a little bit about what we are doing as the IMF to advance patient priorities and make things better for everyone. Just how you can get involved as well. At the IMF, we really focus on access to care, but we really want patients to be at the heart of this. So I wanted to cue up a video just to show a little bit about the impact we're making.
It really shows how important your voice is, but I think I wanted to tell you a little bit about what are we actually advocating for. How we decide our priorities for what we're going to discuss with legislators. We want to make sure, one, does it impact someone's access to care or get rid of a financial barrier, or will it help obtain more research dollars.
This right here is just a little bit of a breakdown with some examples of things that we've worked on in the past. Some of it is a little bit in the weeds, but I would say telehealth reform is a big one that we hear from a lot of patients about. Some of the shenanigans that you might get from your insurance company that would make you wait to get your treatment. That's a really big one that we hear about. Or just something that is impacting your cost of care, whether that be your Medicare plan and how much it charged you, or just how much a specific drug costs.

And then lastly, in the last bucket, the research bucket. We want to make sure that anyone who wants to access a clinical trial can do so that there aren't artificial barriers such as you can't travel, what's too much for you. We want to be able to have ways for you to get there if you can. And one little thing I wanted to cover. This was covered really well and in depth yesterday. A big advocacy when we did have was the creation of a yearly out of pocket cap for Medicare. That was $2,000 in 2025, about estimated to be $2,100 in 2026. But that law, we fought for a very long time for that.

And a little bit again about what's important to us and what's going on, and this is kind of the elephant in the room. Some of the big things that I think if you talk politics with your friends that might be discussed, cancer and public health funding, that's something that we've been really activated on. We've been having our patients share their stories with legislators and with us. Just, I have this incurable cancer, this research funding is important to me. And then second, the big beautiful bill had some cuts to Medicaid that aren't immediate. They're in the future, but anything that would cause someone to lose their insurance coverage is something that we'll be active on.

People who have Medicaid have shared with us, this is the importance of that with them. And coming up in the future, also Affordable Care Act cuts that could be kind of looming if there isn't some congressional action taken. We are making sure that our voice is out there being heard just to make sure that nobody loses their insurance coverage, especially if they're a myeloma patient.

And lastly, access issues are something we get asked about often. We're kind of told, "Hey, there's a lot of noise going on. What's going on with this issue?" Specifically the Cancer Drug Parity Act, that Bill makes sure that folks that have an insurance coverage will have the same coverage for an IV therapy that they'll have for an oral therapy. We hear from a lot of people who are on some of those therapies that you take at home, the pills... the myeloma pill form, the chemo. We hear the Revlimids, the palmless, "Hey, that costs me a lot more." And we want to make that level. We've had success at 44 states there, but we're looking for a federal solution.

And just to kind of show the importance of this, we have some patients in this room that have advocated with us, and we have an advocacy masterclass that I'll get a little bit into later, but raise your hand if you have taken the masterclass or done any advocacy work with us. Yeah, I see several people here. We'd love to increase that number. I actually wanted to have one of the patients who has done our masterclass and will be joining us for something really cool that I'll cover later in the presentation. Just talk about his experience. Rich Armstrong, I wanted to see if you would be willing to step up and share some of your experience.

Rich Armstrong:
Can you hear me?

Danielle Doheny:
Yes.

Rich Armstrong:
Oh, okay. There we go. So thank you very much. I appreciate the opportunity. And so I will say that taking the masterclass was very humbling and very sobering. I learned a lot including how I was actually affected in a way by step therapy that I had not any idea about. And so I would recommend anyone, patient, caregivers to give it a try in terms of taking the advocacy classes and just being an advocate not only for yourself but for other people. All of our stories are ones that are potentially stories of advocacy. Anything that you can do to be an advocate. I didn't start out thinking I was going to be an advocate, but I realized that I made some mistakes that caused my treatment to be delayed, that I need to talk about to save other people. And now I coach other patients and tell them about all of the great things that I've done to help them to survive and have a better quality of life.

And so I love the International Myeloma Foundation because it is really all about patient advocacy, but we can help them along and we can help ourselves by thinking in terms of advocacy. And I think the more we know about our disease, the more we know about some of the circumstances in terms of barriers to care, in terms of how we can actually increase the access to care and how we can advocate for ourselves and for our community. I've gone to DC as a part of trying to help research funding, make sure that we have that healthcare funding. And so we all have the capability of doing that. All of our stories are important. We're all great at it because we just share it from our heart, our experiences. So hopefully this helps.

Danielle Doheny:
Thank you so much. So there really is something for everyone when it comes to advocacy. I think a lot of people think like, "Oh, I don't want to go to Washington." And that's okay. We don't all have to go to Washington. But we do have an email list of folks who get our emails that just have a pre-filled in email where you just click a button and it'll send a message to a legislator and tell them, "Hey, I support this." And that really will help us because when I go in and do my job, when I go to lobby or when our patients go in to share, "Hey, this is how this is affecting me," it really is helpful whenever you have 20, 30, 40 emails coming in from the community also saying like, "Hey, I support this measure, this opportunity to help somebody get more care."

So that's really, I think the most basic one is just sending the emails that we'll even write for you. The second piece, our master class, our advocacy master class is constantly evolving, but it started as a 12 week program. Now it's about 15 based on some of the feedback we receive from patients. But where it starts out is just how congress works, basic one-on-one. And then we'll go into some of the more in-the-weeds issues such as like what Richard mentioned, step therapy. And that's something that says, Hey, you have to try this drug and this one and this one before you can have this one. Or you can't... It's an insurance barrier. But we help patients identify what barriers may have impacted them, and we have legislative solutions for that. We have things that we're going to Congress for saying like, "Hey, this isn't okay."

And what you're really doing and helping provide us with is the human impact and the storytelling because I can come here, go to congressmen, whatever, with a big old page of statistics and saying, "This is how many people had this happen to them. This is how many people who live in California had this happen to them." But if they're not hearing from us as a community, they're not going to do anything with a bunch of numbers that I give them. They really need folks to come and share their story. But our... that masterclass is really tailored to that, helping people learn about how the system works and how to share your story. And we really want folks to feel empowered. And maybe you don't... It's not just for patients, it's for caregivers as well. It's for loved ones, family members, children, even medical providers should they want to.

But anybody can do this, and it's not political. You don't have to be really strong on one strong Democrat, strong Republican. This is for anyone, and you're just saying your story. And one thing I also want to make sure this room knows, I've had a lot of people come to me who have taken the class that when they start, they think, "Well, I don't have a story. Nothing has happened to me. My story's been pleasant. My experience with myeloma hasn't been bad." But then you start talking to them and that you find everybody here has a story. Everyone in this room either has a cancer that currently does not have a cure or cares deeply about someone who has a cancer with no cure. That is a story in itself to take to Congress. My personal story in that arena, I was previously a Capitol Hill staffer working for a member of Congress in Florida, and in 2012, my dad was diagnosed with myeloma.
So I think from my standpoint, at that point, I need to do something. I can't see other people go through what he went through. And I think that's what a lot of our advocates have experienced. Having a feeling of I don't want someone else to have to go through the pain of getting a diagnosis and looking on Google and seeing terrible statistics. Like when my dad was diagnosed, I think Google told us he had two to five years to live. He's still alive now. He's doing beautifully. But yeah, he's had it more than a decade and is thriving. And just to kind of finish my presentation, our ultimate goal is to be able to bring anyone who wants to come advocate with us to Washington should they want to do so. We are bringing a group of just under 20 folks to DC come in Washington... coming to DC in September towards the middle of the month for Blood Cancer Awareness Month.

And we're really proud. These folks have worked really hard to be trained and ready, and they're ready to share their stories. They're ready to help us shape the agenda with what we're going to ask the members of Congress for. But we would love to train you too if you would to. Anybody that wants to, whether you might not want to do it yourself. You might have someone in your mind like, "Hey, my family member might want to do this." We'd love to have them with us, and everything is free. So that's just my last little toss out there. Like we will pay for everything for your trip if you come with us to DC and the masterclass is also free. So I am quickly running out of time, but if you guys have questions for me afterwards, I will be at my booth. I'm happy to address any questions people have then. Thank you.