When participating in FORCE’s Virtual Advocacy Day, it was difficult for me not to go off-script, as anger welled up inside me.
Recently I participated in FORCE’s Virtual Advocacy Day on Capitol Hill. FORCE (FacingOurRisk.org) is a non-profit organization dedicated to improving the lives of families and individuals facing hereditary cancer. FORCE’s first Virtual Advocacy Day was set up to educate members of Congress about vital issues* affecting the hereditary cancer community.
I became an advocate because my wife died of a preventable breast cancer caused by an inherited BRCA2 mutation and because my daughter inherited the same mutation from her mother. And, like my courageous previvor co-advocate on that day, I’m trying to help spare other families the unbearable pain of losing a loved one to a preventable cancer.
Educating members of Congress about the urgent need to pass current hereditary cancer legislation that provides affordable access to genetic counseling, testing, screening and preventative measures turned out to be quite educational for me as well. And there is so much more to learn.
It was also an exercise in restraint, as I so wanted to go off script and get up on my soapbox and unload a boatload of anger and grief regarding my wife’s cancer struggles and death.I wanted to push for some current laws to be changed so others don’t experience what happened to my wife.
Doing Advocacy Day reinforced what I have come to learn about cancer – that cancer is not something honestly and openly discussed and there is a lot of naiveté, fear and ignorance surrounding the disease, screening and treatment. And that includes the general population, our lawmakers and, sadly, even some physicians.
And in the case of hereditary cancer, add denial.Seems even families where multiple family members have died of cancer, often nobody wants to take a hard look at the reason why and openly address it. That’s what happened in my wife’s family.
And knowing what I know now, I find it frustrating and unbelievable that the sharing of potentially life-saving genetic information is left entirely up to family members because of current health care privacy laws. A hereditary cancer risk is not an individual privacy issue that needs to be protected. To me, it is no longer an individual issue when it is obvious that other members of a family could have inherited a mutation that might pose a deadly threat.
Why, with all the technology that we have to detect a hereditary cancer threat, and all the ways we have to effectively communicate that information, the responsibility to share information is left to family members?
Think about it. The sharing of vital and often life-saving information is trusted to individuals who might be ineffective communicators and scientifically and medically illiterate. Assuming they do care and are reasonably intelligent, will they be able to convey the reason why genetic counseling and testing is so important?
Consider this analogy: Say structural engineers found that there was a credible risk of your house collapsing on your family sometime in the future, but they left the sharing of this important data to your “Uncle Bob,” a chef. He may be a great cook, but adequately explaining the dangers of a problem with the gravity and lateral loads of your house’s structure and how to get it checked and fixed probably shouldn’t be trusted to him.
So why is Uncle Bob, who just learned of a deleterious germline mutation in the family — and likely doesn’t have a clue to what “deleterious germline” means — trusted to accurately share information about a potentially deadly hereditary cancer risk to other family members?
My wife died needlessly of a hereditary cancer. It could have been prevented. So, I will continue to get up on my soapbox and share my wife’s tragic story and plead for changes. Hopefully it will raise more awareness and save some lives.
That’s why I blog here and will continue to be an advocate for better cancer screening and treatment, regardless of the type of cancer. I hope many other cancer patients, survivors, previvors, and caregivers, will get up on their soapboxes and speak up too!
* Reducing Hereditary Cancer Act (H.R. 4110 / S. 3656), Access to Genetic Counselor Services Act (H.R. 2144 / S. 1450), andThe Screening for Communities to Receive Early and Equitable Needed Services (SCREENS) for Cancer Act (H.R.8185/S.4440) that was just introduced.
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