I’m being asked to climb up on my hereditary cancer awareness and prevention soapbox and advocate for cancer screening legislation again – for the third time.
A few days ago, I received an email from my state legislator about setting up a meeting to talk about reintroducing legislation I first initiated in honor of my late wife a couple years ago. It’s a bill that would require doctors to refer patients for genetic counseling and testing when there’s any family history of cancer. Similar bills have been passed in other states, I’m hoping it can pass here in Arizona as well. Unfortunately, the previous two attempts failed in committee because of, well, to be honest, ignorance and partisan politics.
Being an illustrator of children’s books and other publications, dealing with politicians is not something I’m used to doing. And to be honest, I have little patience for the petty BS that often goes on in the political arena. What passes for wisdom there is often bewildering.
Fortunately, I’m not trying to get this legislation passed alone. I have experts in public policy from FORCE joining in the fight and keeping me focused. FORCE is a nonprofit that strives to improve the lives of the millions of individuals and families facing hereditary cancers through education, support, research and public policy advocacy.
Admittedly, I was hesitant to get involved again. I was very disappointed with the first two efforts. And like many others, I feel that some things should be instinctive and should not require legislation to be addressed. However, I feel that this particular bill is important because too many people at risk of hereditary cancer are not being tested.
1 in 279 individuals carry a Lynch Syndrome mutation and 1 in 400 carry a BRCA variant. But many of these people are unaware that they might carry one of these mutations, so the need to encourage more testing is there. After all, isn’t cancer awareness and prevention constantly being stressed? I think that is made evident with all the cancer awareness months, especially October with all the hype and events surrounding Breast Cancer Awareness.
And with vaccines now in clinical trial for preventing cancer in Lynch Syndrome and BRCA mutation carriers, it is more important than ever to make sure people are being screened and tested. Vaccines that may able to not only prevent a cancer diagnosis, but to also possibly eliminate the need for the radical prophylactic surgical measures currently used for those who carry germ line genetic mutations. This offers a lot of hope for the future of cancer prevention.
I know how wonderful that would be as a parent of a daughter who carries a germ line mutation. My daughter has had to face the tough choices currently offered to try and prevent the type of cancer that took her mother’s life.
One of the arguments I often hear about requiring genetic testing is that it might cause anxiety and undue stress to those being tested. But, as the readers and contributors here know too well, there is nothing more stressful and anxiety producing than a cancer diagnosis. Especially a late-stage diagnosis that could have been prevented. There’s a big difference between being anxious about something that can be frightening but just might save your life and the horrible anxiety of knowing you are dying of something that could have been prevented.
To me, it is an idiotic argument. Would a doctor not order a CBC test because the test could reveal something that might cause anxiety to the patient? Of course not. Doctors regularly test their patients for any signs that might indicate the risk of many diseases, including heart disease, anemia, diabetes, and certain blood cancers. So why not test for hereditary cancer risks?
Tragically, I’m a cancer widower because, despite my wife’s family history being filled with many different cancers and cancer deaths, no doctor took notice. And even worse, information about a BRCA2 mutation in the family that some of her relatives had known about for years did not get shared.
When I received the email message about the meeting, I stared out the window at the beautiful autumn Arizona day and had an emotional breakdown. It was on the same day, and the same type of day, six years ago that my wife stepped into my home art studio and told me about a “painful lump. This got me thinking about my late wife and how an undetected BRCA2 mutation and hereditary cancer changed everything — hopes, dreams, life. And it all could have been different if she had only been tested. The life of a beautiful person ended too soon needlessly. The heartache is unbearable at times for my daughter and me.
I will step up again. Saving lives should not be a divisive issue. I hope the wisdom to see that will prevail this time.
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