AUSTIN (KXAN) — When actress Angelina Jolie wrote an op-ed in the New York Times in 2013 about her decision to have a preventive double mastectomy after she tested positive for the BRCA1 gene, doctors saw an influx of women turning to their medical providers to see if that test would be available to them. At the time, most companies were charging $3,000 for the blood test, which made it unattainable for some women who were uninsured or whose insurance did not cover the test.
Fast forward four years and the medical landscape is different. Genetic testing to determine a person’s risk of developing breast or ovarian cancer because of a positive BRCA1 and BRCA2 gene is becoming more affordable. New technology is allowing independent labs to charge less for the testing, even if it is not covered by a patient’s insurance.
People who test positive for the BRCA (short for breast cancer) gene have a greater risk of developing breast and ovarian cancer, along with some other cancers. The U.S. Preventative Health Task Force has issued a statement encouraging women with a history of breast and ovarian cancer in their families to have the test, but, historically, it has been out of reach for women whose insurance won’t cover it.
“It’s so much more expensive for women after they face cancer, it’s an enormous bill. It needs to be affordable because some women don’t have insurance,” said Leticia Pena, who was diagnosed with breast cancer at age 29 and later tested positive for the BRCA gene, along with her mother, great aunt, a sister, and her daughter, Megan Rojo.
“I was too young to remember, but I know through the stories that my mom had been through a lot and so for me, getting tested, I felt like it was a way to control the outcome,” Megan said.
Four years ago, at age 25, Megan tested positive for the BRCA gene mutation.
“It’s different when it’s your daughter,” Leticia said through tears. “You know, when it’s you, you know you can do it and you’re willing to go through whatever you have to go through. But, when it’s your daughter, oh my, that’s tough. That’s very, very tough.”
Because of Megan’s family strong history of breast cancer, her test was covered by insurance, but some women are not so fortunate.
“When we started out doing BRCA testing it started at about $4,000, which is a lot of money for a truly lifesaving test,” said Gayle Patel, a genetic counselor at Texas Oncology. “I’ve definitely seen family members who needed testing, who qualified for testing, but couldn’t access to it due to significant cost and insurance not covering it.”
With advancements in technology, the cost of the test is now within many people’s reach. At independent labs like Counsyl, new, automated technology allows the lab to charge $350 for the test, even if it isn’t covered at all by insurance. Some labs will do the test for as little as $250.
“The hard part is you can never tell the patient for sure if their insurance company is going to pay for it or not,” said Dr. Moya Griffin, a breast surgeon at Texas Oncology. “The bigger problem, honestly, that I see, is that there’s a difference in the criteria between insurance companies. So, some insurance companies will pay for it with a certain criteria and then other patients will meet other criteria, so that’s hard to talk about with a patient.”
Patel encourages people who are concerned about their risk for getting cancer, based on their genetics, to speak with a genetic counselor and request testing at a lab that offers the lower cost.
“They built a clinical lab from scratch, using custom robots, hardware and software. What they couldn’t buy, they literally prototyped and built with tools like 3D printers,” said Ted Snelgrove, Chief Business Officer at Counsyl. “This dedication to cost reduction means that savings can be passed on to patients. The average out-of pocket cost is less than $200 for patients with insurance (due to co-pays and deductibles) and $349 for patients who are under insured or lack coverage.”
Patel also warns people not to be lulled into a false sense of security by a negative BRCA test. While the test can help determine a woman’s likelihood of developing breast or ovarian cancer, it is not the only cause of these cancers and a person with a negative BRCA test can still develop cancer in the breast or ovaries. She encourages people to see a genetic counselor to look at their entire family history of cancer to determine which genetic tests would be most beneficial. She also says it is important to remember men can also carry the BRCA gene.
Leticia has been cancer free for 25 years. Two years after Megan’s positive test, she elected to have a complete mastectomy and reconstructive surgery.
“The surgery actually puts me at a normal risk, so now I have a 5-8 percent chance of having cancer, a breast cancer, in my lifetime, whereas before it was 87 percent,” Megan said. She is now a mother to 1-year-old Sofia, who she will encourage to be tested after age 18.
“Regardless of the outcome, I’m not worried about her, I know we’re going to help her deal with it whether it’s positive or negative. But, I worry more for those women who never have the opportunity to find out, those who never have that chance to get tested,” Megan said.
Message from KXAN Anchor Shannon Wolfson
This story was especially important to me because of the history of breast and ovarian cancer in my family. The first time I asked a physician about BRCA testing, the cost was estimated to be around $1,500 and no one could assure me it would be covered by my insurance, so I elected not to have the test at that time. Earlier this year, my doctor told me her office was now working with a lab that guaranteed a lower cost, even if my test was not covered by insurance. The cost was still high, but more manageable, I felt.
After much discussion with my husband and family about what we would do with the results of this test, I decided to move forward. Two of my great grandmothers had breast cancer, along with two great aunts. And a cousin died from ovarian cancer at age 48. My BRCA test was negative (yay!), but because of the history of these cancers, and others in my family who had different cancers, including my maternal grandmother and grandfather and my Dad, genetic counselors recommend further testing and close monitoring.
For me, the idea is not to be lulled into a false sense of security because of a negative test, but also not to live in fear or worry. If I can prevent something before it happens, for me, it’s the best way to manage my health.