Johnson Newspaper Corp May 2026 (here with no paywall)

2026 0513 AM Jeffrey Dinowitz speaker at presser 2.png

2026 0513 AM Jeffrey Dinowitz speaking at presser 1.png

On May 13, 2026, a coalition of nonprofits and patient advocates went to Albany to lobby for the Dennis Crawley Genetic Protection Act of New York (Assembly Bill A3229/Senate Bill S9695). Named for a beloved baseball coach who passed away from hereditary ALS, the bill would expand protections against genetic discrimination. Currently, under federal law, employers and health insurers may not use an individual's genetic information to discriminate against her. However, other insurers, such as disability, long-term care, and life insurers, may. This bill would prohibit them from doing so.

The ALS Association and ALS United Greater New York led our coalition. I went on behalf of FORCE: Facing Our Risk of Cancer Empowered. Senator Cordell Cleare and Assembleymember Jeffrey Dinowitz, two of the bill's sponsors, spoke in support of it at our press conference. Four patient advocates, including Ashley Crawley, the daughter of the person the bill is named after, also did so. Because I dropped off my speech with the reporter covering our event, I was the only patient quoted.

The full text of my speech is below.

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.

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.