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Welcome to Connecting ALS. Today we discuss advocating for access to genetic testing.
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.
This transcript was exported on Jan 31, 2023 - view latest version here.
Melanie Lendnal:
We have a multi-pronged strategy to try and make these tests not just accessible and affordable to people, but also to ensure that if anything comes up in one of those genetic tests, that there are not negative repercussions.
Jeremy Holden:
Hello everyone, and welcome to Connecting ALS. I am your host, Jeremy Holden. While roughly 90% of ALS cases occur without any known family history or genetic cause, remaining 10% of cases are inherited through a mutated gene with a known connection to the disease. In families with familial ALS, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.
That is why genetic counseling and testing are an important part of diagnosing and potentially preventing cases of ALS. For more information on genetic counseling and testing, I would encourage listeners to go back and listen to our conversation with Ellie Harrington, genetic counselor.
Now, because genetic testing and counseling are critical to the treatment and diagnosis of ALS, it is important that public policies are enacted to make sure people living with the disease and their families have access to genetic services. Regarding a genetic indication of ALS, congress must pass legislation to protect coverage of genetic testing, for example.
On January, lawmakers in Maryland introduced a bill that would prohibit life insurance, long-term care insurance, and disability insurance policies from discriminating against people based on the results of a genetic test.
To learn more about the ways that advocates can help enact policies to protect and expand access to genetic counseling and testing, I checked in with Melanie Lendnal, senior Vice President of Public Policy at the ALS Association. Melanie, thanks as always for being with us this week on Connecting ALS.
Melanie Lendnal:
Happy to be here.
Jeremy Holden:
Just taking a glance at the public policy priorities, the association is sitting forth for the year, and I noticed one of those. And hey, for listeners, we'll be diving deep into all those public policy issues throughout the year. This week, the focus kind of on genetic testing.
And I know that one of the keys to preventing harms associated with ALS and potentially eventually preventing cases of ALS is access to genetic testing and counseling. So talk to me a little bit about the role that public policy can play in making sure people do have access to genetic counseling and genetic testing.
Melanie Lendnal:
Thank you for asking that question. I will say that the public policy department is very interested in this particular area for all of the reasons that you've already mentioned. First, we need to do work to make sure that public policy officials, frankly at all levels of government, understand how important it is for people to have access to genetic testing and to genetic counselors in a way that doesn't impact them in a negative way financially.
So that means insurance coverage in most cases. Then on the other end of the spectrum, you also have a situation where under federal law right now, people do not have to worry about facing discrimination in the health insurance context or in their employment context as it pertains to genetic information that has shown up in a genetic test.
However, that does not mean that life insurance companies, long-term care insurance companies and disability insurance companies can't use any genetic information against an individual who is seeking that type of insurance coverage. So for example, if someone gets a genetic test and learns that they have the SOD1 gene, certainly they are not going to experience health insurance discrimination.
So they're not going to pay higher premiums. They're not going to be denied insurance coverage and they're not going to by law, face any discrimination in the workplace. But it does mean that those other insurance types, long-term care, life disability, can refuse to ensure that individual altogether or can charge outrageous premiums for doing.
So we have a multi-pronged strategy to try and make these tests not just accessible and affordable to people, but also to ensure that if anything comes up in one of those genetic tests, that there are not negative repercussions for all of those other insurances that we all may consider purchasing at one point or another.
Jeremy Holden:
We're going to talk a little bit later in the episode about a fight happening in Maryland around those issues of privacy and non-discrimination. You talked about access, affordability and just the ability of people to pursue genetic counseling and genetic testing. Do you have a sense of the current landscape with respect to how insurance companies cover genetic testing and genetic counseling?
Melanie Lendnal:
So it varies greatly from insurance company to insurance company, and there's also variations in how insurance companies choose to cover it or not based on an established family history, for example. But in general, folks do have to consider when they get a genetic test.
When they choose to get a genetic test, they have to figure out whether their insurance is going to cover it or not and what that might mean for them financially speaking. Then in the aftermath, once an individual has learned the results of a genetic test, they may want more information. I think we all would.
So having access to a genetic counselor so that people can learn A, what their genetic tests mean and what changes from a life perspective they may consider making as a result is incredibly important. And then of course, we also mentioned earlier the fact that right now all these other insurances beyond health insurance do have the ability in most states to discriminate against people based on the results of a genetic test, and we just have to prevent that.
Jeremy Holden:
To what extent is that fear of discrimination of that and anything someone might learn through genetic testing could be used against them by a long-term care insurance or a life insurance company. To what extent is that preventing people or giving them pause from pursuing genetic testing?
Melanie Lendnal:
I can tell you this, there are numerous studies that have been conducted on this topic, and one of the top three reasons people cite to decline a genetic test is fear of discrimination from life insurance, long-term care insurance and disability insurance.
Jeremy Holden:
And that's an important point because increasingly genetic testing and understanding genetics is key part to preventing disease, to fighting disease. Really taking down barriers to that seems like it's an important thing going forward.
Melanie, one of the things that we've talked about in the public policy realm on this program is the kind of long process. We want urgency, we want things to happen quickly, but public policy making can be a bit of a slog and can take some time. Talk to me a little bit about what the next few months are going to look like and how much of this is we're in it for the long haul.
Melanie Lendnal:
Good question. So I will say that we are working on this issue at all levels of government. So we all know at the federal government, things tend to move pretty slow, particularly in this political climate right now. I think that that's something we're all expecting. But to your point about urgency, we want to do everything that we can do to ensure that we are making as much change as possible as quickly as possible.
So we're not going to wait for federal legislators to pass comprehensive bills on genetic testing reform. We're also working at the state level in states across the country where things do tend to happen much more quickly than they do at the federal level, particularly big changes like the ones we're talking about.
One of the biggest obstacles we know we're going to face, whether it's in Congress or in state houses, is the fact that these insurance companies have incredible political power. They all donate to individual campaigns, they all have lobbyists that they engage to lobby against bills like these.
And frankly, even for the states that do have some protections in place, we are seeing situations already where these insurers are trying to roll back those protections. So this is a big fight. Is it a fight that we are committed to? Absolutely. But this is going to be something that is going to happen incrementally. But we are absolutely committed to doing everything that we can to ensure that these changes are enacted as quickly as possible.
Jeremy Holden:
And that includes listeners who can be very effective advocates reaching out to their lawmakers at the state and federal level. We'll be sure to share links in the show notes so people can sign up to become an advocate and to share their story about genetic testing and genetic counseling. Melanie, thanks so much as always for your time this week.
Melanie Lendnal:
Appreciate it. Thank you, Jeremy.
Jeremy Holden:
Well, as Melanie mentioned, there is an important fight going on in the state of Maryland over the privacy and integrity of information learned through genetic testing. For more on that effort, I recently sat down with Lindsay Gill, managing director of advocacy at the ALS Association, who is spearheading efforts in the state of Maryland. Lindsay, thanks so much for being with us this week on Connecting Als.
Lindsay Gill:
Thanks so much, Jeremy. It's really great to be here. Appreciate you having me.
Jeremy Holden:
Yeah. Well, it's an important topic and something that I think is going to be very meaningful for a lot of listeners and their families, particularly those who have kind of a familial type of ALS. But before we get too deep into the details of what's happening in Maryland, anytime we talk about public policy, I have to learn a whole new slate of acronyms. And one of the ones that has been bouncing around my head in recent weeks is GINA. So let's start there. What is GINA and how does it protect people who pursue genetic testing?
Lindsay Gill:
That's a great question. And yes, we'll try not to speak in acronyms like we usually do. So GINA is the Genetic Information Non-Discrimination Act, and that was passed by Congress and signed into law in 2008. GINA is a US federal law that protects against genetic discrimination in the workplace and through one's health insurance.
It also safeguards individual and family privacy of genetic information, which is extremely important. As we all know, with new advances in science and technology, GINA plays an extremely vital role in establishing a baseline of protection for all Americans against discrimination. And GINA also mandates workplace and health insurance protections.
It means that anyone may obtain their genetic information and make important lifestyle and medical decisions without the fear of genetic information, discrimination at work or through their health insurance. And as we all know, that's extremely important for people living with familial ALS and other diseases as well.
And GINA prevents employers from making job related decisions such as hiring and firing based on genetic health information. And I think most notably, it also prohibits health insurers from determining eligibility, the cost, coverage or benefits that a health insurance policy based on an individual's genetic information.
Jeremy Holden:
Yeah. And those types of kind of privacy and non-discrimination protection certainly become increasingly important as genetic testing becomes much more mainstream and much more common for people as they consider their, as you said, their healthcare and lifestyle decisions. So employment, non-discrimination, health insurance, are there things that aren't covered by GINA?
Lindsay Gill:
So there's a few notable limitations to the GINA protections, which really explains why we're moving on this legislation in Maryland. But with respect to insurance, GINA's protections are limited to health insurance. It currently does not cover life, disability or long-term care insurance.
Jeremy Holden:
And so you mentioned the work being done in Maryland, you've been working closely with a couple lawmakers up there on a bill that would address that shortcoming in the law. What can you tell us about the Genetic Testing Protection Act?
Lindsay Gill:
Yes. So because federal law does not protect against discrimination against life, disability, or long-term care insurance, what we're seeing is currently a patchwork of laws in the States in about 14 states right now that we're calling GINA 2.0. And that does protect against those types of insurances that I mentioned, and that's exactly what we're doing in Maryland.
So we recently introduced the Genetic Testing Protection Act of 2023 or GTPA, as we call it, and it's House Bill 155 that's sponsored by Delegate Kipke in the house. And recently a companion bill was introduced in the Senate, which essentially means a identical bill introduced in the other chamber. And that's Senate Bill 212, and that's sponsored by Senator Klaus Meyer in the Senate.
And we are extremely grateful for their support and sponsorship of the legislation. So the legislation extends the protections and GINA put in placed. So if pass life insurance, long-term care insurance and disability insurance carriers that are operating in the state would not be able to charge higher premiums or refuse to ensure an individual based on the results of a genetic test.
Jeremy Holden:
You mentioned the companion bills. For folks listening at home who maybe aren't super steeped in the kind of details of how a bill becomes a law, the benefit there is that it can move through both chambers somewhat simultaneously rather than having to pass through one and then bounce over to the other and kind of start the process a new, we can pursue them both on the single track. Is that, am I getting that right?
Lindsay Gill:
You're exactly right, Jeremy.
Jeremy Holden:
All right. Look at that. I paid attention in my government classes way back in high school. So you mentioned patchwork of law. So would Maryland then be kind of the first state in the nation to extend this protection? What's the kind of map, I suppose?
Lindsay Gill:
That's a really great question, and what we're currently seeing is there's only a handful of states that have extended the protections with all three of those insurers, but sometimes it can be just simply long-term care insurance or disability insurance.
There was actually a bill in the Maryland General Assembly that also passed in 2008 that was pertaining to long-term care insurance. So what we're really trying to do, excuse me, in the state is wrap up life insurance and disability insurance in the state. So we're just seeing patchwork of laws. And having Maryland cover all three would be precedent and would be fantastic.
Jeremy Holden:
We've talked a little bit in the past about some other state advocacy issues that have been happening, different parts around the country, kind of ramping up the association's work at the state-based level. So for folks not living in Maryland, is this kind of a sign of things to come or it's not like we win in Maryland and that's the end of the fight?
Lindsay Gill:
Yeah. No, you're exactly right. It's extremely important to not only get involved at the federal level, and we've done so at the association for decades and have laid great groundwork and have made extremely unbelievable progress for those living with ALS. But we're also diving into state policy, and it's extremely important to advocate on the state level.
For those that may not know, state legislation moves much quicker than federal legislation. And that is why we're pursuing this for Marylanders and for other states in the future. To kind of put it in perspective, GINA, the federal bill was first introduced in Congress in 1995 and was signed into law in 2008.
So it took 16 years to put those fundamental protections against discrimination in place. It's also vital that we maintain the patchwork of protections that I mentioned in many of those states that have been enacted. Just be for an example, we're seeing this in Florida where we're seeing a problematic piece of legislation filed this year that would roll back some of the protections that are in place.
So ALS advocates will also be needed to oppose that legislation in Tallahassee. So this is something that we're going to be seeing pop up in other states to introduce something like the GTPA, but also to continue to make sure that these protections stay in place.
Jeremy Holden:
Fighting on offense and on defense, as they say in the sports world. What has history shown us, Lindsay, in terms of, you get something passed in a state? Can it provide a model for advancing similar policies in different states?
Lindsay Gill:
You're exactly right, and I think that's what we're really looking to achieve with this Maryland bill, is to have this hopefully pass the general assembly and be signed into law, and then use this as a model to introduce in other states so we can continue this work throughout the country. And this really also bolsters our federal work that we do as well.
So typically if federal lawmakers are seeing that something is sweeping across the country, they may think this could be a great federal protection that we can put in place. So this is really a great starting point in something that we're continuing to, we're starting to pursue, we'll be continuing pursuing at the association. And it's exciting to see that we can get this introduced in Maryland and then continue across the country.
Jeremy Holden:
Hearings are scheduled in the early part of February, the February 8th and 16th, I believe, are the dates.
Lindsay Gill:
That's right. So in the Senate, we'll be hearing SB 212 in the Senate Finance Committee on February 8th. And then we'll be also hearing the House Bill 155 Health and Government Operations Committee on February 16th.
Jeremy Holden:
And we'll share information on how folks listening can tune into those hearings when they are alive. Lindsey, lots of important work over the coming weeks. Glad to have you on board, a part of the team fighting to make this happen and hope to have you back on Connecting ALS soon.
Lindsay Gill:
Absolutely. Thank you for having me.
Jeremy Holden:
I want to thank my guests this week, Melanie Lendnal and Lindsay Gill. Now we will drop links in the show notes on familial ALS and the benefits and considerations around genetic counseling and testing. And 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 the series is CitizenRacecar. Host Production by Alex Brower. Production Management by Gabrielle Montekeen, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.
ConnectingALS_020523_Ready1 (Completed 01/31/23)
Transcript by Rev.com
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