Enhanced State Advocacy Efforts Bring Fight Against ALS to Statehouses

ALS Advocates

The ALS Association has enhanced its ability to make ALS livable for everyone, everywhere by establishing a nationwide state policy and advocacy department committed to empowering people with ALS to fight for better public policies in their community.

Connecting ALS recently sat down with Kara Nett Hinkley, vice president of state policy at The ALS Association to learn more about the role that state advocacy can play in the fight against ALS. You can follow Connecting ALS and listen to the entire episode HERE.

The transcript of that conversation has been edited for brevity and clarity.

A lot of advocacy is happening right now in states across the country. What can you tell us about state advocacy in 2023 and beyond?

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.

We really began implementing and designing, putting into place this infrastructure for a hyper-targeted, nimble, and impactful state policy and advocacy program in 2022. It relied heavily on collaboration with ALS advocates, staff and 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.

ALS Advocates

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.

You recently took a position with the National Association of Insurance Commissioners Representatives Board. What is the NAIC and how will your role help the community?

What we've achieved is a two-year appointment on the National Association of Insurance Commissioners Consumer Representatives Board. 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.

We will be 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.

What are some of the key policy priorities that will inform state advocacy work in 2023?

To date, from January 1st, 2023, we have taken a position on 215 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 until we have a cure. And this effort, it's incredibly exciting.

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 is, “What is my return on investment?” And now, because of this cost calculator that we have internally and now have infographics and one-pagers and we have a white paper and a memo, 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.

ALS Advocates

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 life, long term care insurance or disability insurance.

Additionally, the Medigap legislation that we're focused on in Kentucky -- we're working on this in a number of states. We just recently testified in Nebraska. And that Kentucky piece, it looks like 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.

Sign Up to Become An Advocate

What have you seen in your time doing state advocacy to indicate that a win in one state can extend outside that state’s borders?

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. This appointment puts us 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, ask 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.

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?

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.

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 laws, and that's what we're really looking for.

CLICK HERE to listen to the full Connecting ALS podcast episode with Kara Nett Hinkley, “Expanded Efforts at Advocacy in States.” You can subscribe to Connecting ALS at ConnectingALS.org.

To continue to follow stories about ALS advocacy across the country, subscribe to receive our weekly blogs in your inbox HERE or follow us at als.org/blog.


We Want to Hear from You!
Your feedback is important to us. Please let us know what you think about our blog – take this short survey and provide your input and feedback.

Join the conversation. Please comment below.

10 + 6 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.