With Mother’s Day upon us, I’m advocating for better genetic cancer screening so that no more children are motherless on this day.
So many tragedies could be avoided if our health care system focused more on disease prevention and health education instead of trying to fix our bodies after they are already broken.
Late last year I contacted my local legislative representative and suggested creation of a breast cancer gene screening bill based on a law passed in Nevada in 2021. Basically, it would obligate primary care doctors to properly screen for familial BRCA mutations and recommend genetic counseling if appropriate. It also would require that genetic testing, if necessary, be covered by health insurance providers.
I pushed for this bill because last June my beloved wife of 40 years died in my arms after courageously struggling against a BRCA2-associated cancer that could have been prevented. It was horrible beyond words what she endured. It was horrible having to watch her suffer. And it was horrible for our daughter to watch her sweet mother be consumed by a cruel disease.
Nobody should die of preventable cancer. I felt I needed to do something to honor my wife and save others from suffering the same fate.
My representative got to work crafting legislation based on my suggestion. In January, just a few days after what would have been my late wife’s 59th birthday, HB 2529, was introduced into the Arizona House. Most importantly, if passed, it would save lives. But it would also save on the enormous expenses paid by the patient and the insurance companies for treatment for cancer that was not prevented or caught early.
Had this bill been in place, I sincerely believe I would not be a widower and our daughter would not be motherless this Mother’s Day. Comprehensive screening by her doctor years ago would have revealed a devastating family history of cancers, many related to a BRCA2 mutation. My wife then could have had genetic testing and prophylactic surgery that would have reduced her cancer risk by about 95%.
But even without the proposed screening law, my wife’s cancer should never have happened. How it was not prevented is so insanely heartbreaking it is sometimes hard to comprehend.
Because of current health care laws, the sharing of genetic mutation information with family members is left up to relatives acutely aware of the defect. Tragically, information about the deadly seriousness of the threat of cancer and the urgent need for genetic counseling is often not communicated to at-risk family members.
Sadly, in my wife’s case that is what happened. The family’s cancer risk and specific mutation information never got openly shared until my wife was diagnosed with metastatic triple-negative breast cancer. And this was several years after the germline BRCA2 mutation was originally discovered.
However, after confirmation that she carried the mutation, my wife made it a point to be sure all her siblings knew about the risk. She was adamant about them all immediately seeking genetic counseling. My wife also made it a point to tell others about being proactive in cancer screenings and about being aware of any family cancer history. I’m trying to carry that message forward with my advocacy.
Unfortunately, our daughter inherited the family’s BRCA2 mutation from her mother. She is being proactive, but it’s a lot to live with considering what happened. However, like her mother, our daughter has faced inheriting the mutation with incredible courage as well as the willingness to educate others about cancer prevention. Her mother would be so proud! But it is sad to think, that instead of mourning her mom, our daughter could be celebrating this Mother’s Day with her as a BRCA2 mutation co-previvor.
My heart aches for my daughter — and her mother.
Currently HB 2529 is currently stuck in the Arizona House Health and Human Services Committee. I’m hoping it will move along soon for a vote.
Text of the bill: https://www.azleg.gov/legtext/55leg/2R/bills/HB2529P.htm
I have also contacted my senator in Washington and asked for his help in crafting a similar bill on the national level. The possibility is being researched.
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