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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:
So this year alone, we've taken a position on 396 pieces of state legislation across 49 states. Of those, 97 have already been enacted, six more sit on governor's desks today. We've secured state appropriations to the tune of 16 million so far, so 10 million more than last year.
Jeremy Holden:
Hello, everyone, and welcome to Connecting ALS. I am your host Jeremy Holden. According to ALS Focus data, people with ALS and caregivers are accustomed to submitting claims and prior authorization requests to health care insurers including Medicare, Medicaid, employer-sponsored plans, private insurers, and the Veterans Administration. They're also familiar with insurance denials. Approximately one in three participants reported submitting at least one claim or prior authorization that has been denied. These denials were most often for medications, mobility equipment with necessary accessories or in-home care services.
Although more participants had submitted claims than prior authorizations for ALS care, fewer appealed claims when they were denied. Participants also noted they often had to appeal up to three times and wait up to six months for a final resolution. Following the appeal process, roughly a third of prior authorizations and claims were still denied or only partially generated, leading some to pay out of pocket or not received the care or service they needed. This is a problem.
The results of this survey also demonstrate the high burden that denials of essential ALS care place on people living with ALS. Many participants noted that jumping through the hoops of these processes, even if it eventually results in an approval, puts additional strain on individuals and families already dealing with so much. For many, spending months waiting for care, services, equipment, or therapies wastes time that is limited and precious. These cumbersome processes are not constrained to one specific insurance company or type of care, but are part and parcel of living with ALS. More must be done to ensure that our community is receiving the timely care they need without the hassle. You can check out the link in the show notes for more information on ALS Focus survey results.
Anyone who has been denied coverage for an essential health care need can appeal that decision. That process can begin with getting access to all the information and an insurance provider used to deny coverage. And you should know that everyone with insurance has the legal right to request all files generated around their claims. These files can contain details on exactly why claims were denied, which can be helpful in putting together an effective appeal. By law, insurers must respond to the claim file request within 30 days, but there is more that can be done to make sure that everyone living with ALS has full access to the insurance benefits they need.
Health insurers regularly review and update their coverage policies to reflect new clinical evidence. This inspires confidence that we can bring them evidence to update their policies to make sure they cover the full range of health care needs that extend life and enhance the quality of life for people living with ALS. That is why The ALS Association has filed formal objections to the health insurer Cigna for that company's decision to exclude Relyvrio from its formulary as part of the continued fight to ensure access to approved treatments. I should say here that there are several treatments that have been approved for the treatment of ALS and you should confer with your medical team about the treatments that are right for you.
Now, access to approved treatments is only part of the battle. Accessing insurance coverage for durable medical equipment is also critical to making ALS livable, equipment like non-invasive ventilators, which too many private insurers are either refusing to cover or who are setting up insurmountable barriers to access. Now, we'll be talking about the fight for access to non-invasive ventilators next week so be sure to check out that episode. We're also talking about equipment like power wheelchairs with seat elevation. One in four respondents to a recent ALS Focus survey said they had to pay out of pocket for the cost of their power wheelchair, with 47% saying their insurance company refused to pay for their power wheelchair seat elevation. Moreover, 50% of respondents said they had to pay out of pocket for their portable ramp or rollator, and that is why The ALS Association is committed to empowering the community to advocate with private insurers and insurance regulators for policies that make sure treatments and durable medical equipment is not only available but accessible, because insurers play a critical role in making ALS livable for everyone everywhere.
Our guest this week is Kara Nett Hinkley, national vice president of state policy at The ALS Association and a member of the National Association of Insurance Commissioners' Consumer Advisory Board, about some of the work being done to break down barriers to accessing health care.
Kara, thank you so much as always for being with us this week on Connecting ALS.
Kara Nett Hinkley:
Yeah, of course, Jeremy. It's always great to be here and to speak with you.
Jeremy Holden:
Couldn't think of a better person to have on this as The ALS Association starts to talk or has a spotlight on insurance access, availability, and affordability this month. I know you've been doing a lot of work on this and certainly in your capacity as a member of the National Association of Insurance Commissioners, something like that, the NAICs' Consumer Advisory Board, certainly you are up front and close to this issue as anyone. I kind of want to start at kind of a high level 20,000 foot view. We throw around a lot of terms that we kind of start to understand our prior authorization step therapy, but just broadly speaking, what are some of the ways that insurance companies erect barriers to access to care?
Kara Nett Hinkley:
Yeah, that's a great question and good lead in kind of talking about some of the work we've been doing on the regulatory side in the role as a member of the Consumer Representatives Board with the NAIC. So an umbrella statement to put a lot of these issues under are these utilization management tools. So you have health insurers and now you have pharmacy benefit managers as sort of a third party that they really put into place these utilization management tactics that are really there to control costs. Pharmacy benefit managers are a booming industry and they've been going pretty unregulated for the past 15, 20 years, and it just so happens that they were sort of out of touch, out of reach for regulation or legislation to sort of control some of their practices or to make anything they were doing transparent. It used to kind of be that the insurers had these consultant relationships and they were off the table for regulation. And that has really shifted since 2022.
Luckily in our role with the NAIC, we've been able to be part of a very small consumer work group marking up the first of its kind PBM regulation in the ways of model policy. So the NAIC puts out recommended model policies and white papers that all state insurance commissioners who are members of NAIC will receive and they look forward to the guidance that the NAIC puts out as a way to kind of have a blueprint for how to do things right in their state so that they are protecting consumers within the industry, that they're really there to serve and protect. So we, on that work group, were able to really go through and redline markup 35 pages of model policy that initially didn't mention patients a single time. So I'd say that our work there is necessary, our seat at that table is necessary. We are the first rare disease seat. And because of our work, I'm going to make sure that there's always a rare disease seat moving forward.
Jeremy Holden:
You mentioned that bill in Arkansas that got some of this work moving forward. What are some of the other policies that the team is looking at in various states to try and really address some of the challenges to access that you see?
Kara Nett Hinkley:
Absolutely. So we're fighting these barriers to care on all fronts. So we have Rich Brennan over on our federal team working with agencies and HHS and the White House and different executive agencies leading this fight. And then we have Kathleen Sheehan overseeing our congressional affairs team, really looking at Congress to implement some of these items. We have a divided Congress. And because of that and because of sort of internal politics and what we really see politically on the horizon, these things are really going to be handled at the state level for right now. So this year alone, we've taken a position on 396 pieces of state legislation across 49 states. Of those, 97 have already been enacted, six more sit on governor's desks today. We secured state appropriations to the tune of 16 million so far, so 10 million more than last year, but who's counting? Those dollars really go toward ALS clinics and ALS care services more broadly.
Now, as it comes to your question and really where those fall in the bucket of access and affordability, really the majority of them are bills to make sure that there are patient-friendly and consumer-friendly policies at the state level to really get rid of some of these barriers, both to access as well as affordability because access without affordability isn't access, period. So 30 of the bills we've taken a position on this year would expand coverage for biomarker testing; 27 would prohibit the use of copay or accumulator adjustment programs. These are one of those utilization management tactics that I mentioned that insurers, PBMs are using to capture rebates and hold on and make the process more lucrative for them while putting more of a financial burden on patients. So basically it doesn't allow for patients to use their patient assistant programs or drug coupons for manufacturers to count towards their out-of-pocket costs. So they're fully responsible for paying their out-of-pocket costs up to the maximums while the rebates and the funding that they're able to capture for PBMs goes directly back to the health insurers.
Now, 17 of the bills aim to reform prior authorization regulations, and that's something that we have talked about quite a number of times. So again, prior authorization is a utilization management tool, again, used by health insurers and PBMs to cut costs. So we know that when access to medications and equipment is delayed or denied, many patients won't submit an appeal. Either it's cumbersome, it's confusing, it's really intentionally opaque and unclear, and we want to make sure that patients have transparent and patient-friendly reforms to the prior authorization process. So what does that look like? You'll see individual pieces of legislation that look to get at all the different pieces, and we prioritize a number of prior authorization issues that we really focus at at the state levels.
Are the prior authorization protocols of a plan, are those transparent and upfront when you're actually shopping for the plan? Are the stipulations and guidance for this plan written in plain language? Are there defined turnaround times for prior authorization? If I submit an appeal, how quickly will that be heard and responded to? And not only that, who is actually reviewing that appeal? We want to make sure that there are qualified specialists that are reviewing appeals and offering these denials when they offer them. Oftentimes, we're hearing more and more about batch denial software where hundreds of prior authorization requests are denied in a matter of minutes. That certainly does not indicate that a patient's medical record is properly being reviewed. So making sure that we get a handle across the board on prior authorization I think is really critical. And then I'll just highlight, we've also seen 15 kind of general drug access and affordability pieces of state legislation.
Really what we're keeping an eye on in that bucket of work is, are these drug affordability and access boards that states are implementing? We want to make sure that the metrics that they're using as they really are looking at the cost benefit analysis for the drugs that they include on their formularies, we want to make sure that those metrics aren't discriminatory. We want to make sure that quality of life isn't being measured as less than for some patients, and therefore they are less deserving of certain medications that might be higher cost. So really making sure that the metrics are not discriminatory and that these drug affordability boards are doing the good work that they're looking to do. We all want drugs to be lower cost, absolutely, but we also need to make sure that they don't discriminate in the process of doing so.
Jeremy Holden:
Not all of these fights are happening in every state. I guess I want to ask this question by way of example. I think I saw earlier today that three states so far this year have enacted policies that let's just say expand access to Medigap coverage for people who in those states had previously been denied. So for states that aren't part of those three or where these fights aren't currently active around utilization management or some of the other fights that are ongoing around access and affordability, is there reason to believe that wins in one state beget wins in another state and create something of a snowball effect so that the winning becomes infectious?
Kara Nett Hinkley:
Absolutely. We even talk internally as an organization, how do we make sure we're not recreating the wheel? How do we look into what others have done? How do we fail forward? How do we see where things have gone off track and learned from one another? State legislatures function in the exact same way. We always attend the National Conference of State Legislatures, NCSL. They have a legislative summit every year, and it's the largest gathering of state legislators and legislative staff across the country. And why do members go there? They go there to connect with one another and they go there to hear best practices across the states. Legislators certainly reach out, especially regionally, to states around them to see what are they doing, what is working, and what is not working.
So in Medigap, we had successes in Kentucky, Virginia, and Nevada this year. However, we're also seeing momentum in Nebraska, Texas, Arkansas, Illinois, Rhode Island. It's certainly catching on, and that's what good policy does and we want to be the fan to that flame. Certainly sharing best practices and good policy with members is really what we aim to do at these sort of events. I think two bills stand out to me this year that are really important to us. They are first of their kind legislation. They were enacted this year. The State of Washington enacted a bill to increase diversity in clinical trials. We think that this is obviously a very important thing to do, and we are certainly going to be sharing that with legislators from Minnesota, Vermont, Alabama, Arizona. We want to certainly keep lifting up and echoing what are good policies to make sure that the clinical trials are inclusive, that we're making sure that we are really dedicating as much as we can to making sure the pipeline is diverse, is equitable, and therefore when drugs come to market, they work for everyone. That's certainly a big priority for us.
Another bill that comes to mind is one that was passed in Colorado this year. It disallows, it prohibits medical bankruptcy from impacting credit scores. That's obviously something that folks really do have to deal with who have high cost health conditions like ALS, and making sure that that medical bankruptcy cannot be counted against you in the calculation of your credit score. It's incredibly important for people and it's incredibly important for families.
Jeremy Holden:
Fascinating bills. We look forward to seeing how those advance in those state legislatures. So we're talking here about the trickle across, maybe if we can think about it that way from across state lines, but you mentioned earlier some of the work that's being done in terms of regulatory affairs, like advocacy in front of the Medicare folks or National Institutes of Health, some of that agency level advocacy, but then also in the halls of Congress. So I guess my question is, is there hope of a trickle up effect that some of the leaders in Washington see that this is a hot button issue in the states and maybe we need to look at how we're doing business in Washington D.C. as well?
Kara Nett Hinkley:
Yeah, it absolutely is. That's something that around the federal team, we talk about this frequently. If something goes stagnant in Congress, we're going to always be moving at the state level. So we're going to keep trying to tip the scales and add those number of states so that our congressional counterparts can go and say, over half the states are enacting this legislation, which clearly indicates that in a representative democracy, it needs to be happening at the congressional level as well. I think a good example of this is with the Genetic Testing Protection Act. We ran first of its kind legislation in Maryland to really ensure that, one, folks weren't being denied long-term care disability or life insurance based on participating in or the results from their genetic testing. In addition to that, we don't want folks denied. We also don't want them charged more based on genetic testing. So making sure that there are anti-discrimination protections within, again, those three markets of life insurance, long-term care and disability insurance.
In Maryland, that bill was not successful this year, but it's still a win. And I'll tell you why. We built the infrastructure, we built the coalition, and we led that this year in Maryland. So we are set up for success going into 2024 to get that passed. We saw similar pieces of that legislation pop up in Tennessee that was enacted, that prohibits life insurers from canceling a life policy based on genetic information. We saw it in Virginia where there are now additional protections for consumers' privacy regarding the direct to consumer genetic testing market. In Florida, they have some really solid protections already in place. And there was a bill this year that would've gutted key anti-discrimination protections in the insurance market, and we had a big part in making sure that harmful language was struck prior to this bill's passage. We're also seeing similar legislation in South Carolina and New York and in Illinois as well. So we're going to see this continue to bubble up. It's now also something that is being seen and heard on the congressional level, so it's certainly, activity in the States does have that trickle up effect.
Jeremy Holden:
Yeah, it strikes me hearing you talk about state by state and pieces of legislation trickling over the line. I hear a lot make ALS livable for everyone everywhere, and it strikes me that you're part of the everyone-everywhere component of that important work. Before I let you go, Kara, any other thoughts on this issue of ensuring insurance access and affordability for everyone?
Kara Nett Hinkley:
Absolutely. I'm incredibly excited about a project that is coming to fruition. It is our state roadmap project, and these roadmaps will be for all 50 states tailored for each state as well as D.C. The goal of this project is really to show to lawmakers how do you make ALS livable In Alabama and California and Michigan and Colorado. We've identified eight policy priorities that when adopted will significantly improve the health, well-being, and longevity of people living with ALS. Our mission is, like you said, to make ALS a livable disease until we can cure it. We've laid out eight policies that at the state level when fully implemented will absolutely make ALS more livable across every state. We also highlight state funding opportunities and extra credit items so that we can also highlight what are some cool, unique, different creative ways that states are really implementing policy that benefits people living with ALS.
So it's regulating pharmacy benefit managers and coverage for genetic counseling, not just testing, but also counseling. Does your state tax durable medical equipment? Let's get rid of that state tax. So this tool will be something that it's going to roll out in August. We'll share the website with you certainly, and we'll look forward to coming on to Connecting ALS and talking about this tool. It really covers from Medigap, genetic testing, the different utilization management tactics used that we've discussed today. Failing first or step therapy where a cost control mechanism is used to require that a patient fail on one medication before trying what medication was actually prescribed by their provider. Increasing access to telehealth, the copay accumulator adjustment policies that we mentioned, making sure that those copay adjustment policies are really reformed or all out banned in the states. Prior authorization, more broadly, making sure that Medicaid is expanded across the states under the Affordable Care Act. And also the establishment of rare disease advisory councils where really an advisory board that has some teeth, it really allows the rare disease community to have a stronger voice in state government.
So I'm thrilled to have this product roll out in August, and I look forward to your listeners and to ALS advocates and every state being able to take this to lawmakers to really show them here's the baseline. Right now we're at bronze on prior authorization. These are the other things we can do to get to gold. And again, the end result is making ALS livable in every state.
Jeremy Holden:
If I had a sneak preview of it, a very exciting project, the state report cards. So looking forward to bringing that to listeners. Kara, thanks as always for your time.
Kara Nett Hinkley:
Yeah, thank you, Jeremy.
Jeremy Holden:
I want to thank my guest this week, Kara Net Hinkley. As I said, we'll be talking more about this issue of making health care accessible and affordable for people living with ALS next week, so be sure to tune in.
Now, if you like this episode, please share with a friend. And while you're at it, 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 Brouwer, production management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.