Hello everyone, and welcome. Oh, that says I'm muted. Let's see. All right, perfect. You guys can hear me okay? Thank you. Hi. I see Jason on, I see Stephanie. Welcome everyone, hi, and welcome to the International Myeloma Foundation's Facebook Live. We are counting down to the end of Blood Cancer Awareness Month right now, and we have some merchandise to give away today, and we are also just here to talk about advocacy.
Hi, I see Monica, I see Gwendolyn, I see Carlton. Welcome everybody. Just let me know where you're all coming in from. I'm so excited to see everybody. Welcome. As I said, for the next half hour, we're going to chat about advocacy and health policy, and all things in the realm of those things that are impacting the myeloma patients, their families, caregivers. Wow, Orlando Florida, Jason. Monica from Norway, wonderful. An international audience, this is fantastic. Oklahoma, Maryland, welcome.

So we're just going to talk about health policy and patient advocacy tonight. My name's Danielle Doheny, and I am the Director of Public Policy and Advocacy for the International Myeloma Foundation. I work on the US side, and because IMF is truly a global organization, I do also have some wonderful colleagues who work on these issues outside of the US and globally. I see multiple folks on the international side. Toronto. But I do have colleagues, Mimi and Sirdar, who do that amazing work across the globe, and I do that in the US. As I mentioned, we put together this Facebook event for Blood Cancer Awareness Month, and we've really been working hard this month to raise awareness of myeloma. It's through our Know Myeloma campaign.

And I see Annabelle from New Jersey, I see Steve from Boca. I wish I was in Boca right now, it's just raining here like crazy in DC. Australia, welcome. Lots of folks here. So again, we are here just to let you know about our Know Myeloma campaign, that's K-N-O-W. And you can use this campaign to learn about myeloma, anything myeloma related, whether it's the education side, the science side, the advocacy side, even the fundraising side. Anything myeloma is being promoted through this campaign so that we can really let the world know what myeloma is, and the impact that it has on our patients.

So we at the IMF as you know, we're just here to support you through your myeloma journey, and I'm just so excited to talk to you about how we can do that through advocacy. Thank you so much, we will share that in the chat. And I guess before we start today, I just wanted to tell folks a little bit about my personal story and why this is important to me, why I really want to help myeloma patients, and why I've dedicated my career and my life to doing so, and to shaping public policy in a way that'll help folks that have myeloma.

My father is a long-term patient. When he was diagnosed more than a decade ago now, his GP basically told our family don't look at those survival stats, because there's just been so much progress on the drug development side, on the therapeutic side, that what you're going to see isn't reflective of what the patient experience is now. You're not going to live that two to five years or less. And of course, my family, the first thing we do is Google the survival stats, and yeah, spoiler alert, it was really discouraging. Not good. But despite that, we got our heads together and started to look at more reputable sources for information. We found the IMF, and started with a myeloma specialist, and the information we had was much more encouraging. He's lived more than a decade with myeloma. And when he was diagnosed, I was working on Capitol Hill at the time, working healthcare issues for a member of Congress, and I just realized that I really want to help people going through this. And I guess that's why I'm passionate about making sure that people know myeloma, and that legislators are aware of the patient journey and what's going on with patients. And our ultimate goal is to cure the disease.

So we just want our stories to be heard by policymakers, and we really ultimately want your voices to be heard in this debate too. It's really important to me that, okay, I go to Capitol Hill on behalf of patients, but unless we have a patient from the district it's just not as helpful. They really want to hear from people from home. And we do have the opportunity to give away swag today. I have permission from my higher ups, and I'll show you my Know Myeloma hat. You could be a proud owner of this hat as well.

I see our first question coming in. I see Jason asks, what does oral parity mean? Good question Jason. Oral parity, if you're not familiar with the term, has to do with how much basically patients are... I'll give the patient perspective of it more than the in the weeds, legislative description of it. A lot of patients who are prescribed oral oncolytic drugs are paying much more for... apologies. I had, my questions are disappeared. They're back, okay. So patients who are prescribed oral oncolytic drugs are paying significantly more out of pocket than if they were prescribed an IV drug, or a drug that they get in their physician's office.

So 43 states plus DC have laws that say that if an insurer covers both these oral therapies and these IV therapies, that they have to do so at the same rate. So for example, if it's a copay of $25 to go get your IV chemo, that's how much it'll cost for your oral therapies. And that's really important for the myeloma patient. My dad's been on some of these oral oncolytic drugs, and his out of pocket is pretty high for that. It's very different than when he goes into, he's been on IV therapies as well. Very, very different experience, to not, you don't necessarily know how much the oral therapies are going to cost, because it's something called coinsurance, and coinsurance means that a patient is paying a percentage of a cost of the drug. Which we all know that's pretty unattainable for most patients. Folks, if it's... I'll just throw out a number, if the drug costs $100,000, you might think 10% of a cost of a drug is nothing when it's a drug that's $50 out of pocket, but 10% of a $100,000 drug, that's not feasible.

So there is a federal piece of legislation out there called the Cancer Drug Parity Act, and that would fix it for anybody with a federally regulated health plan, which would be fantastic. It's these, the federally regulated health plans. And I know that a lot of folks are on Medicare, so I want to also flag how, some changes in Medicare that are coming that are very positive for patients. So the Medicare program is going through a restructure due to a piece of legislation that passed a couple years back called the Inflation Reduction Act. And I wanted to flag for patients in the coming years, there will be an out of pocket cap of $2,000 for over the course of that whole year for you. I know from my folks who are on many different therapies, it'll be life changing to know you only have to pay $2,000. It's not happening right next year, but we do have some educational materials on that, so we're very excited.

And we just shared an oral parity map. So if you have a state regulated health plan, for example if you work for the state, or if your employer has a plan that's only in that state, you would benefit from the state plan, but otherwise you would need this Cancer Drug Parity Bill that we have. And let's see, do I see any other advocacy questions?

Absolutely Alana, thank you so much. The Coalition to Improve Access to Cancer Care is this coalition of cancer advocates, and not just myeloma. All across the spectrum. It's us, it's breast cancer groups, it's other blood cancer groups, it's hospitals, it's providers. All kinds of groups who are very passionate about passing this oral parity bill. We come together, we meet once a month, and we talk about strategy, and how can we move this forward. We talk about how can we, does anybody have anybody who can help us meet with this legislator, if for example somebody, some organization, has a lot of people impacted by their disease in a specific state, or if they have a lot of just very passionate people there. Maybe they work closely with a specific member of Congress.

And also we work together to amplify the patient voice in this scenario. We will bring patients to Capitol Hill. We will do so much together. And that's one thing that I think is really beautiful about the cancer community, that I don't think everybody has together in other disease areas, is we are so collaborative. We come together, and we really just try to amplify each other's voices. There's always a seat at the table for everyone, and we ultimately really want the patient voice to be heard. The advocacy groups, we can only do so much without the volunteers. The volunteers are really what makes it happen. And I just shared here, the Myeloma Action Team. And we really, really want to work to amplify the IMF's advocacy program, grassroots program, and have the patient voice come out there.
And I see another question here from Jason. What would a federal oral parity law do, and is it important? Absolutely, yes. Thank you so much Jason. It is extremely important, so the reason being is a little nerdy and in the weeds, but I love this question anyway, and it's something that we have to explain to legislative offices. And basically, different types of health insurance are regulated by different bodies. So you have state regulated plans that only the state can say what goes and what doesn't go in the state regulated plans. So if I live in Virginia, my state does have oral parity, but if you cross the border into, if you go over to North Carolina, they don't have it. That said, I have a federally regulated plan, even though I live in Virginia, I can't take advantage of that oral parity law that my state has. So if I were diagnosed with cancer and would need an oral oncolytic drug, I would not have oral parity. I would be at the risk of paying that big copay, depending on assistance, hoping that I qualify for it. So that federal law would help me. So if you work for a company that has maybe employees in multiple states that would be a federally regulated plan, you would need that federal oral parity bill whether or not your state has a law, because it's federally regulated versus state regulated.

Thank you so much Steve for flagging, yes, Congressman Steve Scalise was just diagnosed with myeloma, and we keep him in our prayers, and just... yeah, it can impact anybody. Yeah, it's a tragedy when you see anybody diagnosed with myeloma, but I can say that as a patient family member and working at IMF, I just truly appreciate somebody high profile like him whose got the ear of reporters, of saying, "I have myeloma." Even just that raises so much awareness. We have had lots of stories of, what is myeloma, seeing news stories come out about it. And that's not just something that Congressman Scalise can do. That's something that we can do, something that any patient can do. You can write a letter to the editor about what is myeloma, or what access issues you've had. Anybody can raise awareness, so I really appreciate that.

And I know not everybody likes to raise awareness, and putting my name out there, but anybody can... we have opportunities to send emails to legislators, we have opportunities that, even at just the click of a button, they'll send out something called an action alert. You get the email, you click send. If you want to you can put a personal story in. If you want to, you can forward it to your friends and family to send on. We try to make it easy, and we also try to make it so that whatever level of engagement you are comfortable in, that you can do. Whether that's, I'm going to go meet with a legislator, we'll prep you for that, so don't be intimidated. If you say that's something you want to do and come to us, we will get you trained up.

And we really are working to amplify our action team. We did have our first meeting, we're hoping to have more. We kind of kicked the can down the road for our second meeting, just with shutdown, showdown and everything there. But we did produce a video that you can see on the action team website, of kind of advocacy 101. So if that's something you're interested in but you don't quite know what it is, you can watch our 101 video, and then from there, email me. You can join the action team and not do everything that we have on the page. You don't have to meet with legislators if you don't want to. You don't have to share your story. You can just be a voice for your support group of saying, this is what's going on, or just a voice to other patients or to your families what's going on.
And I see a question that just came in about, the IMF talks about congressionally directed medical research. What is that? That is a fantastic question, and something I'm really excited about. It's been really, something I can point to that's been a great success that the IMF led the charge to achieve. So the congressionally directed medical research program is a program run by the Department of Defense that does research essentially, on whatever topics Congress says that they are to do research on. So our mission was to make sure that myeloma and the blood cancers were included.

And I see, I'm actually just going to work this in with Jack's question too. I see, Jack honestly, this excites me to see a question about collaboration, because yes Jack, the IMF does work with LLS Advocacy a lot. We go to the hill with them on this specific issue of congressionally directed medical research. We come together and decide the strategy of how are we going to ask this, how are we going to work on this together. My dog clearly has opinions about the congressionally directed medical research program, because he's barking at something. That's Nigel. But we do work very closely with LLS on this. We have shared spreadsheets and everything, and we do the visits to Congress together. We also work with the Department of Defense themselves to recruit patients to serve as consumer reviewers for this program.

So this program is really unique in that it's not just researchers saying, this is what I think should be researched, or this is the best science. They come to the table with, what is the best science, and then they bring patients to the table as consumer reviewers to say, "This is what's relevant to me. I know that this is all great science, but I don't care about this, or this, or this. This isn't going to impact my quality of life, but this will." So the patient voice is really heard within the CDMRP program, and if anybody's interested in serving as a consumer reviewer, let me know. Because we as the IMF, along with LLS, we come together, and we will recommend patients to the Department of Defense, help you fill out that application. And the Department of Defense keeps that on file for whenever they need folks to act as consumer reviewers.

And it's not something, you don't have to be a scientist to do it. You just have to have the perspective of a myeloma patient, or a caregiver, or a family member. The DoD, they'll come in and say anything that needs to be said in terms of what you need to look out for. They'll train you for everything that's... And it's a truly powerful program. We've had great feedback from the Department of Defense on the patients that we have sent to them, as well. They've been very excited about the contributions of the myeloma community to the program, especially since we are a newer disease within the program.

And I just wanted to also plug, the IMF doesn't just go for this research program, or this research program. We will push NIH funding, CDC funding, NCI, anything that we think will impact the myeloma patient, we are out there saying, increase the funding here. Do this, help us here. And that's something that patients can be involved in too. You can say, "Hey, this is important to me." And we can get you into that, to a meeting with... it will help us too, to actually have a patient say this is why this is important. They can say this is important to me because myeloma doesn't have a cure, and my dad has it, and I want to see a cure. But if you have somebody, if I'm visiting a congressman from, for example, Georgia, I'm not from Georgia. They want somebody from Georgia to say this is why this is important.
And I see another question that just came in from Jason on how influential can a consumer reviewer be. I haven't served as one myself, but I hear from many patients that it's a very rewarding process to be involved in, to have that say in what research gets funded. And I think if they had a negative perception of it, there wouldn't be folks that were coming in saying this was a positive experience. Anybody that we've spoken with who has done this has felt it's been rewarding, and I think it's been positive.

And that's just one way to get involved. If you hear consumer reviewing and you're like, eh, not for me, there are other involvement with federal agencies that we can give people's names to. There's also just with us. We want to hear what you... and even if you don't, you could say, "I'm not comfortable doing any of that." You can just give me a call, talk with me, and whenever I meet with legislators, I share stories that I hear. With your permission obviously, but if you tell me your story and there's a certain legislator that I think they need to hear this, I will take it to them and make sure they know. So that's something that's, we really want to make sure you're heard.

Do we have any other questions? No, not yet? Okay. Oh, we do. Yeah, so I see, thank you Jack. He just answered Jason's question. He says, "I've been a reviewer Jason, and offering the patient perspective carries a lot of weight in these grant reviews." Amazing, thank you Jack. So if anybody has an interest in doing this, it's rewarding, and it carries a lot of weight. And you can email me anytime at [email protected] (mailto:[email protected]). Always willing to try to set up a time to talk on the phone, respond to your email. Again, this is something that, getting folks involved is just so important, and IMF really, really wants to amplify that.
And Dr. Durie talks about myeloma and first responders. Has the IMF done any work regarding this? Yes they have. And this was a little bit before my time, but the IMF was very active during the passage of the James Zadroga Act for 9/11 first responders, and we also have endorsed legislation related to firefighters, veterans. We definitely, Dr. Durie has shared a lot of amazing work, and points about this, how myeloma does impact the first responders and individuals who have faced toxic exposures. And that's actually something that we do take to Capitol Hill when we're advocating for things, even like the CDMRP. Because we take that data and the anecdotes over to the legislators, because that's something that they need to know, that those who served our country, those who served their communities, are getting this disease more often than the general public, and we really owe it to them to dig in and research this, and make sure that these people who have been impacted negatively by the service that they did with a myeloma diagnosis are taken care of.

So, absolutely. The IMF does value that. And we follow any piece of legislation out there that might mention toxic exposures, myeloma, and if it's something that would really impact our community, we'll endorse that, and we also will toss out something called an action alert. I mentioned that a little bit ago. An action alert is just a pre-prepared opportunity for you to click a button and send a letter to your member of Congress from you, and has our words there, but also has room for you to edit them, make it however you want, add your personal story in there. So if you want to learn more, visit myeloma.org. And again, thank you so much to everyone for joining today. Yeah, just excited to give out the swag.

And I guess before we close, I just wanted to thank everyone for joining me. Again, my name's Danielle Doheny, Director of Public Policy and Advocacy for the IMF. And just remember the whole point of our visit tonight, we really want to spread awareness for myeloma. We want people to know myeloma. So please visit myeloma.org to learn more about knowing myeloma, and just share that with everyone. Share the message, and anybody who gets their swag from their question, wear it out. When I wear my myeloma gear, I get questions about it. Sometimes you'll have people be like, "Melanoma?" And then you can say no, and tell them about myeloma. It's really important that we are a recognized disease, and just from my personal experience, it's something that I hadn't heard of. It was a decade ago, but before my dad was diagnosed, I hadn't heard of it. So we have an opportunity to know myeloma. Thanks everyone.