Stepping Up Again for Hereditary Cancer Prevention

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On Feb. 6, HB 2783 was introduced into the Arizona House. Hopefully this bill will help address some of the issues surrounding genetic testing, genetic counseling, and insurance coverage for those who might be at risk for hereditary cancer. My wife died of a cancer that was totally preventable. Nobody should die of a preventable cancer.

I was recently asked to get up on my hereditary cancer prevention soapbox once again. Believe me, I do so very reluctantly. The retelling of my beloved late wife’s complicated hereditary cancer story is unbearably painful — especially when talking about how it all could have been prevented. But that is what motivates me to step up.

The day before what would have been my wife’s 60th birthday, I was invited to attend a Zoom meeting with my state legislative representative. It was to discuss hereditary cancer screening legislation she had originally introduced last year. That bill was something I advocated for becauseof what happened to my wife.

Unfortunately, that measure stalled in a committee because of, well, I’ll just say “political reasons.” However, my representative is very supportive and wanted to try reintroducing it with the hope it might pass this year.

Fortunately, two knowledgeable and passionate advocates from FORCE (Facing Our Risk of Cancer Empowered) joined me to talk about the importance of the legislation and how best to reword the bill for maximum effect. I no longer felt alone in my advocacy.

I was fortunate to have their help because I’m no expert at the numerous mutations that might put a person at risk for cancer, and I’m certainly no expert at public policy advocacy. I’m just trying to honor my late wife and doing my best to hopefully save others a lot of suffering and heartache by trying to get this bill passed.

Drawing of a box with a cancer ribbon on one side and "hereditary cancer prevention" written on the other

Mark's "hereditary cancer soapbox."

Before I began stumbling through my opening statement recounting the facts of my late wife’s cancer story to everyone on the call, I was struggling with my emotions and thinking: “Why do we need a law for this? Shouldn’t this already be a standard of care? My wife should be a previvor just like my daughter. She should be hiking the Grand Canyon or kayaking with me. She should be mentoring future educators and working on all the education book projects that were left incomplete because cancer robbed her of her life.”

In my advocacy, I have heard arguments against required testing because hereditary cancer is rare. But hereditary cancer is not that rare. According to FORCE, “overall, about 10-20% of cancers are believed to be caused by an inherited mutation.” That indicates that up to 400,000 individuals are diagnosed with hereditary cancer each year.

And the causes of hereditary cancer weren’t just recently discovered. The BRCA1 gene was discovered in 1994, and the BRCA2 gene in 1995. (Everyone has BRCA genes, by the way.) The identification of cancer-causing mutations in these two genes soon followed. That was almost 30 years ago! Since then, mutations that may pose a risk for cancer have been discovered in several other genes. And yet, in 2023 we need legislation to mandate doctors to properly screen for family cancer history and, if warranted, refer patients to genetic counselors?

In a “TIME” magazine interview, Dr. Mary-Claire King, discoverer of the BRCA1 gene said, “I am increasingly convinced that it is both feasible and a good idea to offer a blood test, a sequencing test for BRCA1 and BRCA2 and some of their sister genes for every woman after about age 30." That interview was done almost a decade ago.

Additionally, a 2018 report in the journal JAMA Network Open stated: “Genomic screening of more than 50,000 people shows that more than 80% of those who carry an identifiable genetic risk for breast, ovarian, prostate, and pancreatic cancer don't know it despite frequent interaction with the healthcare system.”

My late wife diligently engaged with the healthcare system. She had regular checkups at several doctors of different specialties. And those doctors were aware that there was an extensive history of cancer in the family. If just one of those doctors had referred her to a genetic counselor, as I’m advocating to be required in the legislation, it could have saved her life.

They may not yet be able to fix broken genes, but there are ways to prevent many of the types of cancers that those faulty genes can cause. But that requires adequate screening and testing. Which in turn can prevent a lot of suffering and heartache — but most importantly, it can prevent the loss of precious lives.

There’s room on my hereditary cancer awareness and prevention soapbox if more people would like to join me.

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