DEPEW, N.Y. - Insurance is something we all rely on. But people who have genetic markers for a disease are denied life insurance, among others.
There is a renewed push in Albany to even the playing field for insurance coverage, an effort named after a beloved Depew baseball coach.
Dennis Crawley had a saying: “I want to advocate for change, not for me, but for our future generations.” Before he passed, he asked his family to keep fighting. They are.
In federal law, under the Genetic Information Nondiscrimination Act of 2008, people are protected from discrimination when it comes to health insurance. But life insurance companies, as well as long-term care and disability insurers, can following the result of a genetic test.
“When he was diagnosed with ALS, he kind of was like, I'm not going down without a fight," Ashley Crawley, Dennis' daughter, said.
Dennis died in August of 2024 due to ALS, the 27th member of his family to be diagnosed and die from the disease.
“So I was attached at the hip with my dad," she smiled. "He was a very centric person, very outgoing, very raw, very tell it like it is. Like you just need to be the best version of yourself."
But the best version of Crawley includes the gene that could lead to ALS. In the eyes of insurance companies, she’s not the best version for them.
“At 21, I was worrying about life insurance,” Crawley said.
Picking up where her dad left off, she’s teamed up with the ALS Association to advocate for the Dennis Crawley Genetic Protection Act. If passed, it would eliminate discrimination based on genetic predisposition for these insurance policies.
“Certainly, insurance companies do not want this bill,” Assemblymember Jeffrey Dinowitz (D-Bronx) said. “So I'm sure they're exerting pressure.”
Dinowitz is a sponsor of the legislation.
“I've had the bill, actually, for about six years now,” Dinowitz said.
In memos sent from insurance companies opposing the legislation, he says it’s always the same argument.
“They'll say it's going to increase costs," he said. "We're going to have to pass it on to our customers. Translation they're worried that it may cut into their profits a little bit.”
We reached out to the The National Association of Benefits and Insurance Professionals to get their thoughts. The trade association represents health insurance and employee benefits professionals. In a statement, the NABIP says it adopted a Healthcare Bill of Rights last year, and Article X of that Bill of Rights is addressed in this piece of legislation.
Strategic business advisory Andrew F. Biernat, GBDS, CWCA, says, in part,
"There is uncertainty regarding potential unintentional consequences of DCGPA without a comprehensive cost vs benefit analysis. In New York State, many pieces of healthcare legislation (and regulations) have been implemented without even a rudimentary cost/benefit analysis, which have ultimately increased insurance costs for New Yorkers, reduced competition in our markets and may not have even had the desired outcomes. As background, in 2007 a New York State law was passed, The New York State Health Care Quality and Cost Containment Commission, that called for new insurance mandates to be vetted by a commission of experts – effectively acknowledging that some could do more harm than good. Approximately $6,000,000 was allocated in the budget, but appointments to the panel never materialized, so the commission was never implemented and has since been removed from the New York State budget. This highlights NABIP’s position that the Legislature and the Executive recognize inefficiencies and impractical costs in our current system. While the Dennis Crawley Genetic Protection Act has many positive merits, our association is not taking a formal position currently until a cost/benefit analysis can be completed. "
But this goes beyond health insurance.
Alex Meixner, vice president of state policy at the ALS Association, says getting genetic testing connects people with preventive treatments or medical studies — health care that could be life-saving.
“And we want folks to be proactive about their health in ALS and cancer in anything,” Meixner said.
He says there are 30,000 people across the U.S. living with ALS at any given time and that it’s been proven that this has no impact on insurance rates.
“We point to Florida, where this law has been on the books ... the insurance industry in Florida is doing just fine,” he said.
Crawley says no one should have to choose between knowing their health and their family’s future.
“If you want to do what's right for the people, if you want to do what's right for your community, for your backyard, for your family, that's kind of something that needs to be done to help,” Ashley said.
Currently, this bill sits in the Insurance Committee. Dinowitz is hopeful this is the year.
