BUFFALO, N.Y. (WKBW) — August will mark one year since the Depew community lost Dennis Crawley Jr., the beloved former varsity baseball coach died after a three-year battle with ALS.
Even through his battle, he stayed committed to the team and helped the district win its first state title.
Now his daughter, Ashley, is continuing her father’s fight to help others living with this disease. This week, Ashley met with state senators in Albany to discuss the "Dennis Crawley Genetic Protection Act of New York," which would keep insurance companies from raising premiums for people who choose to get genetic testing done for a disease. Crawley's family has a very aggressive genetic form of ALS.
"My dad was the 27th person to pass from ALS in our family," Ashley said. "Most people in my family haven't lived past eight-nine months once the time of diagnosis."
This is why Ashley and other family members have had genetic testing done so they can potentially be protected with a new FDA-approved drug that slows down or prevents ALS symptoms.
"Typically, insurance companies will be like 'We don't want to give you life insurance,' or 'We're going to charge you a higher premium because you have this genetic disposition,'" Ashley explained.
She said it's infuriating that insurance companies could alter coverage based on more knowledge of a disease. Medical advancements in ALS are being found at the ALS Center at the University of Miami, where she is part of the first ALS preventive clinical trial. It's led by Dr. Michael Benatar, Executive Director of the ALS Center.
"When we've done genetic testing in the research realm, we are very meticulous to keep that out of the clinical record because we don't want it to be discoverable," explained Dr. Benatar, who added that the legislation would close gaps that the Genetic Information Nondiscrimination Act of 2008 (GINA), has failed to do.
"The whole point of this bill is so that insurance [companies] don't discriminate against people who do choose to get genetic testing done earlier and that they can't raise premiums," Ashley explained. "That they can't just decide to not give you life insurance at all."
Ashley hopes she can gain more political support to get it to Governor Kathy Hochul's desk in the near future.
