ALS Association leaders and advocates from the ALS community will press lawmakers in Maryland on Wednesday to pass legislation that would prevent companies that provide life insurance or disability insurance from using information learned through genetic testing to deny coverage or influence price considerations.
The state’s Senate Finance Committee will host a hearing at 1 p.m. ET on Wednesday, February 8th, to consider the Genetic Testing Protection Act. Versions of that bill were introduced in the House and the Senate in January.
Existing federal law, the Genetic Information Nondiscrimination Act (GINA), prohibits employers and health insurers from discrimination based on the results of genetic testing, and 14 states have enacted laws to extend those protections to include life insurance, long-term care insurance and disability insurance. Laws similar to the one being considered in Maryland have recently been introduced in New York, Tennessee, and Illinois.
“Genetic counseling and genetic testing are crucial for people and families living with ALS, and we are committed to doing whatever it takes to tear down any barriers that prevent people from learning about their risk factors,” said Melanie Lendnal, senior vice president of public policy at The ALS Association.
The Maryland House Health and Government Operations (HGO) Committee is scheduled to hold hearings on the Genetic Testing Protection Act February 16 at 1 p.m.
ALS Association leaders testifying during the Senate hearing include Lindsay Gill, managing director of advocacy, and Kuldip Dave, vice president of research. Additionally, John Knowles, husband and caregiver of familial ALS patient Teri Knowles, will be testifying along with Matt Cramer, Chief of Staff to Maryland Delegate Wells, who lost his mother to ALS and Dr. Nicholas Maragakis from John’s Hopkin’s University.
At the House hearing, ALS Association CEO Calaneet Balas and Chief Mission Officer Neil Thakur will also testify.
To watch the House of Delegates hearing Wednesday, go here.
On a recent Connecting ALS podcast episode, we dug into the Genetic Testing Protection Act with members of The ALS Association public policy team who are leading the fight to enact the bill.
A transcript of that conversation has been edited for brevity and clarity.
What is GINA and how does it protect people who pursue genetic testing?
GINA is the Genetic Information Non-Discrimination Act, and that was passed by Congress and signed into law in 2008. GINA is a U.S. 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.
Are there things that aren't covered by GINA?
There are 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.
What can you tell us about the Genetic Testing Protection Act?
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 an identical bill introduced in the other chamber. And that's Senate Bill 212, and that's sponsored by Senator Klausmeier in the Senate.
And we are extremely grateful for their support and sponsorship of the legislation. So the legislation extends the protections GINA put in place, so if passed, 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 insure an individual based on the results of a genetic test.
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?
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 put it in perspective, GINA, the federal bill was first introduced in Congress in 1995 and was signed into law in 2008.
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 for example, we're seeing in Florida a problematic piece of legislation filed this year that would roll back some of the protections that are in place.
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.
Can the fight in Maryland provide a model for advancing similar policies in different states?
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.
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'll continue pursuing at the Association. And it's exciting to see that we can get this introduced in Maryland and then continue across the country.
CLICK HERE to listen to the full Connecting ALS podcast episode with Melanie Lendnal and Lindsay Gill, “Advocating for Access to Genetic Testing.” You can subscribe to Connecting ALS at ConnectingALS.org.