Subscribe
Share
Share
Embed
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Kara Nett Hinkley:
We have taken a position as of this morning on 215, two one five, pieces of state legislation. 215 items that we know have the capacity to heavily impact people, mostly for the good, living with ALS.
Jeremy Holden:
Hello, everyone, and welcome to Connecting ALS. I am your host, Jeremy Holden. In order to make ALS livable for everyone everywhere, it's going to take public policies that can make sure people living with the disease today have access to the care they need regardless of where they live, that their ZIP code doesn't determine whether they can access genetic testing without fear of discrimination, that the health insurance policies they need are available to them without regard to lines on a map. To that end, The ALS Association has enhanced its ability to engage in advocacy in state houses across the country.
Now, we've talked on this show in the past about efforts to secure Medigap coverage for people living with ALS in Kentucky, and recently on efforts to pass the Genetic Testing Protection Act in Maryland. And for a closer look at the battles for better public policies in states across the country, I recently connected with Kara Nett Hinkley, Vice President of State Policy at The ALS Association.
Well, Kara, thanks so much for being with us this week on Connecting ALS.
Kara Nett Hinkley:
Yeah, absolutely. Thank you for having us, Jeremy.
Jeremy Holden:
Yeah, Kara, excited to have you on, an important topic to talk about. We had you on last year to talk about some of the work that's being done in state houses across the country. Listeners well aware of the fight happening in Maryland over the Genetic Testing Protection Act, but that's not all. A lot is happening right now in states. The ALS Association really kind of bulking up or shining a spotlight on some of the efforts there. What can you tell us about state advocacy in 2023 and beyond?
Kara Nett Hinkley:
Yeah, absolutely. We have a shared goal here. Our goal is to make ALS a livable disease while we continue to search for new treatments and cures. So I'll back us up a little bit to 2022. We really began implementing and designing, putting into place this infrastructure for a hyper-targeted, nimble, and impactful state policy and advocacy program. It relied heavily on collaboration with ALS advocates, staff, the association's public policy committee. And from all of that collaboration, one of the key outputs has been this established unified state policy agenda. So that way, there's 12 public policy priorities that align with our goals to advance critical policies that help to find new treatments and cures, to optimize current treatments and care, and also to prevent or delay the harms associated with ALS. And we know that it needs to happen at the state level now, or yesterday, to be more precise, and that state policy makers have the power to change the future of ALS by taking action on these set priorities.
Our advocacy work focuses on educating and mobilizing over 7,000 state legislators holding office today, and in addition to that, state regulators and executives, governor's offices, agency leads. We're building out a more active and engaged ALS advocate network, really to drive change that is truly centered in the voice of those living with and impacted by ALS. I think also ALS doesn't have a political party, so we advance policy in a really nonpartisan manner and we'll achieve our mission going that route.
Jeremy Holden:
You mentioned regulatory agencies at the state level, not just lawmakers. We talked back in December with some folks on the team about some of the efforts to make sure insurance coverage is made available for Relyvrio and other treatments as they become available. You recently took a position, Kara, with National Association of Insurance Commissioners. Talk to us a little bit about the role that you're going to be playing there, advising them on policies and really, I guess, walking folks through what NAIC is and does and why it's important to them.
Kara Nett Hinkley:
Yeah, absolutely. Thanks for bringing this up. So what we've achieved is a two-year appointment on the National Association of Insurance Commissioners Consumer Representatives Board. So what that means is we bring a rare disease lens, a lens around ALS, to review all of the current policies, best practices within the health insurance field across all 50 states, which it's an incredible opportunity for us to really lift up these voices. And I'm not certain about this, but I do believe that we are the first rare disease appointment, and I'm going to work tirelessly over the next two years to make sure that there will always be a seat for a rare disease advocate moving forward.
So we'll review best practices, any regulatory items that aim to increase access and affordability and transparency and our health plans and our medication access. Working closely to share the ALS experience with state Medicaid directors. We know that there's a large portion of folks living with ALS that are dual eligible, so they're served both by Medicare and Medicaid. So these conversations are incredibly important at the state level, and I'm excited to be one of, I think, 15 new consumer rep appointees of a group of 40 of us. We range all over from life insurance, to health, to automobile, to climate change experts. We really are sitting at the highest level as it comes to regulatory policy and many, many things will come from this. The opportunities are really endless and we expect to capitalize on them at every step of the way.
Jeremy Holden:
We look forward to seeing some of the results there and having you back on to talk about some of the big wins in that role. You mentioned Medicare and Medicaid. I know last year we talked to some of the advocates in Kentucky who are fighting for Medigap policies. I know that's one of several. You talked about the 12 public policy priorities. But what's the wishlist for states? Whether it's in 2023 or kind of looking on the short term horizon, what are some of the key buckets of policies that folks are going to start hearing about?
Kara Nett Hinkley:
Yeah, I'm excited about this question. So to date, from January 1st, 2023, we have taken a position as of this morning on 215, two one five, pieces of state legislation. So what does that mean? Is that the number of legislation that's been filed across the US? No, that number is over 60,000 for this year. We are looking at, right now, 215 items that we know have the capacity to heavily impact people, mostly for the good, living with ALS. Are there a few bills that we're in opposition to? Absolutely. Any bills that aim to take away access or transparency or to blur the lines around the way that co-payments are applied, for example, we are at the forefront of that. We have built the capacity for the first time proactively draft run lobby, get advocates in seats testifying to legislators on legislation we know that will matter, that will make ALS livable in every state by 2030 or until we have a cure. And this effort, it's incredibly exciting.
So you'd asked about those buckets of work. So of those 215 pieces of state legislation, they typically fall within those 12 policy priorities, and I'll just kind of cherry-pick a few of the top ones. One is appropriations. So we want states to be funding ALS care services. We've spent a great deal of time and effort working with Health Management Associates, a wonderful partner of ours, to create a return on investment tool. We know that lobbying at the state level for funds, the first question you get from lawmakers, what is my return on investment? And now because of this [inaudible 00:08:36] calculator that we have internally and now have infographics and one-pagers and we have a white paper and a memo, we have all the things now, Jeremy. It's so exciting.
Jeremy Holden:
All the things.
Kara Nett Hinkley:
Yeah. So we can tell a lawmaker every dollar you spend gives you this amount and a return on investment. It equals this much savings and how that impacts families, and being able to tell that story is just so critically important. You had mentioned the Genetic Testing Protection Act of 2023 in Maryland. We're running similar bills and have joined coalitions and started coalitions in a number of other states. I think there's five now that do at least a piece of what that legislation aims to do, which is really to ensure that genetic information and genetic testing cannot be used against you in [inaudible 00:09:27] long term care insurance or disability insurance.
Additionally, the Medigap legislation that we're focused on in Kentucky, as you mentioned, we're working on this in a number of states. We just recently testified in Nebraska. And that Kentucky piece, it looks like maybe this Thursday, we'll know for sure on Monday, but it looks like this Thursday it could get a hearing, so we'll be testifying there. It's an incredibly exciting time. I'll quickly, I guess, recap what the Medigap piece is. So for those on Medicare over age 65, you are eligible for Medigap plans. Medigap plans pay that supplemental, that 20%, that Medicare, traditional Medicare that covers 80%, so that remaining 20% that is not covered can be covered by these Medigap plans.
The problem is, say you are a person who's diagnosed with ALS and you are 55, you are not guaranteed access to a Medigap plan depending on which state you live in. And so we're taking the fight to the state level to say, no, you can't discriminate against folks under 65 who are eligible for Medicare. Not only that, you can't discriminate by denying plans, but you also can't be charging more. And so as it comes to community ratings or just the different pricing mechanisms, we're at the forefront of those conversations. So those are really the top three items. Again, that's really state funding for ALS care services, access to affordable Medigap plans, and then ensuring that we're protected from genetic testing discrimination at the state level.
Jeremy Holden:
And we can share a link in the show notes to the entire slate of public policy priorities, both at the federal and, relative to this conversation, at the state level. You mentioned fights in Kentucky, fights in Nebraska, fights in Maryland on some of these key public policy priorities. For folks living in states where they don't maybe have one of those 215 bills or it's not as active, what have you seen in your time doing state advocacy to indicate that a win in Maryland can spread to similar wins in other states and have an impact beyond the borders of the terrapin state?
Kara Nett Hinkley:
So I think it's incredibly important. We're a nonprofit. Our resources are not endless, and our ability to rinse and repeat what's working well in the states is something that we all have to lean into and really take advantage of and leverage as much as we can. I think that's one of the benefits of this NAIC, the National Association of Insurance Commissioners. The disappointment is that us being at the forefront of what is recommended by a consumer board within that association to all state insurance commissioners. Additionally, they work really closely with the Medicaid directors who seek out best practices and consumer input and a lens from NAIC consumer representatives. And so it really puts our finger directly on the pulse across the 50 states, territories and DC and our ability to run proactive legislation really for the first time. We'll say the Genetic Testing Protection Act of 2023 in Maryland, this is our pilot.
We don't have the time to sit back and strategize and make everything perfectly aligned and all the ducks in a row before we activate. Because of the quickness and the seriousness of ALS, we have to move. And so we really like to think of it as failing forward. We're willing to take risks, we're willing to run this legislation, learn lessons from it, and if it doesn't succeed, why? Let's fix it. And then once we get it through, we're going to rinse and repeat, and we're going to run that eventually across all 50 states, territories and DC. Luckily, we have an amazing family of advocates, amazing staff, amazing leadership within the association that have gone to bat and testified on behalf of that bill in Maryland. And exciting in that I think we're going to get it through the first year, which is also pretty incredible.
Jeremy Holden:
Yeah, that's incredible. Very exciting to watch that fight unfold. One of the things, Kara, you talked about the public policies being designed to try and make sure that we're funding research for treatments and cures, that we're optimizing care, that we are reducing harms, and part of that is for everyone, regardless of where they live. And that means regardless of state boundaries. Is there a way that people can make a determination? Do I live in a good state? Is this a good environment, the state that I live in? Or should we really be leaning into making some of these changes?
Kara Nett Hinkley:
Really driving home that question of how livable is ALS in my state? It's an important question, and luckily we're working with a group on developing a tool to do just that. So originally we had planned by the end of 2023 to have these state report cards out or state roadmaps, if you will, out by, again, the end of the year. And that's just not going to cut it. We're a team that really likes to move things quickly and get things done. So every year we attend the National Conference of State Legislatures Annual Summit, Legislative Summit, and it is the largest gathering of legislators and legislative staff in the country, and that's in August. So we changed our deadline. We're doing this by June. We've rushed, we've gotten all our ducks in a row early. We have conducted the research and now we're working with the team on design and what this will look like. Design stuff we're still figuring out.
So it'll either be this report card or a roadmap with metrics and bulleted points across our state policy priorities to say, set the baseline, say in Alaska or Kentucky, how telehealth friendly are you for someone living with ALS and what are the steps to get you to gold? How can we get you to that A? And then what that does is it says, well, right now you're more like a C, maybe a C plus student, and these are the other pieces of those policies that need to be enacted to get you gold, to get you to be a state or ALS is a livable disease. So that's incredibly exciting. That'll be, again, out mid-year so that we can take these beautiful printed effective tools and meet with, again, over 7,000 state lawmakers when we go to the National Conference of State Legislatures and really be able to provide them with this tool to highlight, these are the things. These are what we want to do this session. This is how we get there. I think they'll be highly, highly effective.
Jeremy Holden:
Yeah, it sounds powerful. I mean, it's a powerful motivator to really want that gold star, to want that A plus, to want that blue ribbon, whatever the metric is, put it out there and have people striving to get there. I think it's less about shaving someone with a D minus and more about giving somebody a goal to strive for. Looking forward to seeing that. We're going to share a link in the show notes where folks can sign up, if they are not already, to be an advocate. But for those who are maybe new to advocacy or just getting into advocacy at the state level with state lawmakers, what are some best tips? How do you do it?
Kara Nett Hinkley:
Yeah, thank you for this question because I think it can be very hard, even if you have an interest in advocacy. Maybe you have a little experience, maybe you don't know much about it, but it sounds interesting to you, you want to learn a little bit, where do you really start? And we want to be responsive, open, and a really incredible resource to bring folks along no matter where they are in their advocate journey. And so I think we're in the process of developing the tools and resources that are on our website. We've launched a state action network. So you can go to ALS.org, you can click on the advocacy tab, and then over on the right-hand side is the state policy specific area. And I would recommend going there, look at the policy priorities. You'll also see the federal team's priorities, which we are pretty aligned, especially on those top three items. So education, messaging, how you talk about the issues, it makes it a lot easier because you pivot between state and federal sort of seamlessly now, which that wasn't the case before.
So one thing I would draw your attention to as you're exploring what advocacy looks like at The ALS Association is the ALS advocate story share. You'll see the link on the website. And what we're doing is we're using story gathering and curation to influence lawmakers and regulators on state policy priorities. That was some word salad. What this means, we need stories to change hearts and minds, to redirect attention. Especially when you have big industry, you have confusing and clear as mud regulation around insurance and transparency and network adequacy, what does that all mean? Being able to tell the human side and really center these policies and the voices of those living with ALS, we can say this person living with ALS isn't able to get to see a provider that is within three hours of their home. So that is an inadequate network. An inadequate provider network. So what are some steps to resolve that? Telehealth is a good place to start.
So by having advocates go to the webpage, click on the story share and just say some of the experiences that they're having, being a person living with ALS, a loved one, a caregiver, a provider. Providers are frustrated. The amount of administrative time that they have to spend and that their staff have to spend on administrative burdens like prior authorization or fail first or step therapy policies. What does that mean? These are policies put in place to make accessing drugs more expensive, more burdensome, to delay access, to try to get you to take other cheaper drugs before giving you the ones that your doctor has prescribed for you. So what are those stories? Having sticker shock at the pharmacy counter because you thought your co-pay assistance was actually paying for your deductibles and your co-insurance, and yet, you show up and you have to pay the full cost of your medication. Does that mean that you're not taking your grandkids shopping that week? Those are the stories that matter, and those are the stories that change loss, and that's what we're really looking for.
Jeremy Holden:
Yeah. Storytelling can be a very powerful motivator as well. Kara, thank you so much for your time and insight today and looking forward to all the successes to come in the state advocacy realm.
Kara Nett Hinkley:
Great. Thank you so much.
Jeremy Holden:
I want to thank my guests this week, Kara Nett Hinkley. If you like this episode, share it with a friend. And while you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners. Our production partner for this series is CitizenRaceCar. Post-production by Alex Brower, production management by Gabriela Montikene, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.