On Wednesday, May 13, 2026, I went to Albany to advocate for the Dennis Crawley Genetic Protection Act of New York (Assembly Bill A3229/Senate Bill S9695).

In 2008, under President George W. Bush, the Genetic Information Nondiscrimination Act or GINA, a federal statute, was enacted. It prohibits employers and health insurers from discriminating against people based on their genetic information. For example, under GINA, a health insurer cannot decline to sell a policy, increase the cost of a policy, or a deny a policyholder treatment because of their genetic information. However, GINA does not ban other insurers, such as disability, life, and long-term care insurers, from doing so.

Currently, Florida is the only state with a law extending GINA's protections to these other insurers. A group of organizations (including the ALS Association, FORCE, and Susan G. Komen) and patient advocates is trying to pass more laws like this in eight states (CA, IL, MD, MA, NE, NY, RI, and SC).

In Albany, the ALS Association and ALS United Greater NY led our coalition. Four patient advocates, including Ashley Crawley, the daughter of the person the statute is named after, spoke at our press conference. Because I dropped off my speech with the reporter covering our event, I was the only one quoted.

The full text of my speech is below.

Johnson Newspaper Corp May 2026 (here with no paywall)

My name is Sophia Bassan, and I live in New York City. I am a volunteer with FORCE, an organization for people with genetic mutations that increase the likelihood of having cancer.

By my late father, I am also an Ashkenazi Jew. Throughout history, Jews have faced persecution that decimated our population. This, in turn, limited our genetic diversity. As a result, we are ten times more likely than the general public to carry a BRCA gene mutation. This mutation increases the likelihood of many cancers, including breast, ovarian, fallopian tube, and pancreatic cancers.

In 2023, my father died of cancer at 72 years old. Before he died, he had genetic testing showing that he carried a BRCA mutation.

Angelina Jolie, the actor, also carries a BRCA mutation. Writing about in the New York Times, she encouraged preventative testing and treatment. In general, our government and medical system also encourage preventative healthcare.

In 2024, I had genetic testing that showed I carry a BRCA mutation. That same year, at 42 years old, I had a risk-reducing mastectomy. Unfortunately, it caused post-mastectomy pain syndrome or PMPS. I had painful shocks that paralyzed me, could not work, and lost my job. My story has been in the news, including KFF Health News, USA Today, CNN, and the New York Post.

Hartford, my long-term disability insurer, denied my claim, stating that my gene mutation was a pre-existing condition. If lawmakers or the press would like to factcheck this, I brought my denial letters and other claim documents.

In 2023, my father died of cancer at 72 years old. Before he died, he had genetic testing showing that he carried a BRCA mutation.

Angelina Jolie, the actor, also carries a BRCA mutation. Writing about in the New York Times, she encouraged preventative testing and treatment. In general, our government and medical system also encourage preventative healthcare.

In 2024, I had genetic testing that showed I carry a BRCA mutation. That same year, at 42 years old, I had a risk-reducing mastectomy. Unfortunately, it caused post-mastectomy pain syndrome or PMPS. I had painful shocks that paralyzed me, could not work, and lost my job. My story has been in the news, including KFF Health News, USA Today, CNN, and the New York Post.

Hartford, my long-term disability insurer, denied my claim, stating that my gene mutation was a pre-existing condition. If lawmakers or the press would like to factcheck this, I brought my denial letters and other claim documents.

Hartford’s denial was a shock. Through my job, I was offered disability insurance as a standard benefit. Hartford never required a physical exam or submission of medical records to be eligible. They also accepted my employer’s premium payments. When my policy began on my first day of work, I was healthy, did not know of my mutation, and had not sought treatment for it.

Further, my mutation did not cause PMPS. To decide if my PMPS was disabling, Hartford did not need my genetic information. Genetic information is apt to be misused. That is exactly what happened to me.

Because Hartford denied my claim, for over one year, I have had zero income. As a result, I have forgone or delayed medical care. This includes fertility care. I do not have children. Starting at 40, women’s fertility steeply declines each year. Due to my mutation, I also had a risk-reducing surgery that makes it impossible to have children without IVF. Because of this, my health insurance covers three rounds of IVF. However, even with health insurance, there are many expensive out-of-pocket costs. At my age – I am now 44 –, Hartford’s denial has devastated my finances and chances for children.

It may be too late for me, but it is not too late for others. They say that children are the future, but I believe that adults like us are also the future. After all, we are creating the world that they will inherit. For the sake of all New Yorkers, I hope New York State will pass the Dennis Crawley Genetic Protection Act of New York. This law would ban genetic discrimination in disability, life, and long-term care insurance. Thank you for your time.