You've probably heard the adage that you are more likely to regret the things you didn't do than the things you did. Maybe there's a long lost love that got away, a career you wish you had pursued, a trip you had taken. We tend to regret missed opportunities.
What nobody really likes to talk about are the missed opportunities that occur in healthcare. A missed physical where you might have learned about your high cholesterol; a missed mammogram or colonoscopy that may have revealed an early cancer diagnosis.
Unfortunately, these types of missed opportunities occur all too frequently with genetic testing for hereditary cancers. Only 10-30 percent of women at high risk of having a hereditary form of cancer are actually tested and only 20-50 percent are referred to a genetic counselor to discuss the option of genetic testing. By "high risk," I mean individuals who have some kind of personal or family history of cancer that suggests cancer may run in their family. This could be multiple relatives on the same side of the family with the same or related cancers, cancer diagnoses before age 50, or rare cancers, such as ovarian cancer or male breast cancer.
Importantly, insurance often provides coverage for testing in these scenarios. And as I've written before, knowing about a possible increased risk of cancer and taking steps to manage that risk has some major advantages.
So what's going on here? What are the barriers to getting people access to testing they qualify for and that could help them better understand and manage their cancer risks? I had my own theories, but I took to Google to see what others thought. Thanks to the patient advocacy organization FORCE, I didn't have to look very far. Here's what I learned:
You are more likely to be tested if your healthcare provider recommends it.
In FORCE's study, women were twice as likely to be tested if their healthcare provider introduced the recommendation to be tested. Maybe this one isn't totally surprising. Despite resources such as WebMD, movements such as Flip the Clinic, and an increase in awareness about genetic testing, most of us still expect that our healthcare providers will put all the pieces together and help us make a plan. That's why we go see them in the first place, right? But in order for our healthcare providers to recommend testing, they too have to be educated on the topic, ask us about our personal and family history of cancer, and be aware of the "red flags" that suggest we would benefit from testing.
Unfortunately, there might be a little more work to do on this front. Only 41 percent of participants in a survey about genetic testing reported that their providers asked about their family history and physicians may need additional education or tools to better recognize individuals at risk.
Sometimes you need to hear about testing more than once.
Life is complicated - even downright messy at times. Sometimes our healthcare providers make recommendations or ask us to consider certain treatment or testing options and we simply forget, our messy lives get in the way or it's just too hard to do what was asked of us. I experienced this recently when my obstetrician told me to get a flu shot (I am expecting my second child this summer). I truly did intend to follow doctor's orders and get a flu shot, but when two pharmacies were out, I gave up. I imagine that if my obstetrician had made it a bigger deal or even had the flu shot in her office, I might have left with a sore arm one day and probably a little less mommy guilt.
Turns out being offered genetic testing for hereditary cancer might be similar -- we need our healthcare providers to remind us and to help remove life's obstacles so we can't easily avoid their recommendations. This might mean offering testing right there in the clinic, rather than making a referral.
You are concerned about cost and insurance coverage.
In women who did not pursue genetic testing, nearly one third cited concern about the cost or lack of insurance coverage. While it's true that most insurance plans have very specific criteria about who qualifies for testing and who doesn't, you won't know if you don't ask. I was surprised that 46 percent of participants in a free genetic testing initiative in the San Francisco Bay area were "high risk." Those individuals likely would have had insurance coverage before the initiative, but for unknown reasons waited until the test was free before moving forward.
Your healthcare provider or a genetic testing laboratory may be able to help you understand the cost of the test and whether you have insurance coverage. In the event that your insurance company won't cover the cost of testing, you should know that the overall cost is dropping significantly with advances in technology. Testing for hereditary cancer may be available for just a few hundred dollars instead of a few thousand, as it was in years past. Additionally, many laboratories offer financial assistance.
There are still some misconceptions about the potential benefits of testing.
I often heard from patients I worked with in my clinical position that they didn't want to pursue testing because they didn't think it would affect their treatment or they weren't ready to have preventive surgery if they tested positive. Sometimes, I even heard these concerns among physicians.
But the truth is that there are several options available, and you get to choose which of those options is best for you and your family. If you've never been diagnosed with cancer, you might choose to pursue more frequent or specialized cancer screening or take certain medications. You might also have the option of preventive surgery, but it's just that -- an option. If you already have cancer, genetic test results may make you eligible for certain chemotherapy drugs or a clinical trial. And of course, genetic test results can help your whole family better understand a family history of cancer and take steps to reduce their cancer risk.
So, let's start planning that trip to Italy, scheduling our next physical or talking more about genetic testing for hereditary cancer. There's still time to take those missed opportunities and cross them off our collective to-do lists.