Tara Kirk was 6 years old when her mother died of lung cancer.
Almost three decades later, at the age of 34, Kirk found out she had a gene mutation that increases her risk of developing a number of diseases, most notably colon and endometrial cancers.
"I was in denial that I could have had it," said Kirk, now 36 and living in Houston with her husband and son.
When people think of gene mutations, the breast cancer (BRCA) genes often come to mind. Actress Angelina Jolie famously laid out her decision to have a preventive double mastectomy after her BRCA1 diagnosis back in 2013.
The lifetime risk of breast cancer is increased by 20% to 49% for women with moderate-risk gene mutations and 50% or higher with those who have high-risk mutations, according to Susan G. Koman.
In fact, researchers have associated mutations in specific genes with about 50 hereditary cancer syndromes, according to the National Cancer Institute.
For Kirk, it is the gene known as MSH6, one of several mutations that are classified as Lynch Syndrome.
While there was family history of cancer, she only got tested after her aunt was diagnosed with endometrial cancer. Kirk now believes her mother's cancer may have started elsewhere before traveling to the lungs.
Since her diagnosis, Kirk goes for annual screenings, including a colonoscopy, endometrial biopsy, ultrasound, and full body skin exam. She gets an upper endoscopy every other year and was told when she reaches 40, she should have her uterus and ovaries removed.
Fortunately, Kirk has insurance. About $3,500 a year comes out of her paycheck to pay for her employer-sponsored insurance and she spends an additional $2,000 a year out-of-pocket for her surveillance. It's a small price to pay for the chance to catch cancer early, she said.
"My very first colonoscopy they found a precancerous polyp, so knowledge saved my life," Kirk said.
Not everyone is a candidate for genetic testing. In fact, only about 5% to 10% of all cancers are considered hereditary, although it varies by the specific cancer.
About one in 400 women have a BRCA1 or BRCA2 mutation, although those of Ashkenazi Jewish heritage have a higher risk: one in 40. Lynch syndrome affects approximately one in 270 people and causes about 3% to 5% of colon cancers and 2% to 3% of uterine cancers.
To determine if you have a gene mutation, first gather your family history and see your doctor, said Susan Brown, senior director of education and support at Susan G. Komen.
If your health-care provider thinks you might have a hereditary mutation, you'll be referred to a genetic counselor, who may order a blood or saliva test.
"It's an easy test," Brown said. "The ramifications of the results can be a little more complicated.
"If you have a positive mutation, then you have to think about what you are going to do with that information."
Testing costs anywhere from a couple hundred dollars to several thousand dollars and may be covered by insurance. The multigene panel is pricey, since it surveys a number of genes.
If someone in your family has already been diagnosed with a specific mutation, you can be tested for that mutation alone, which is a lot cheaper. For those who don't have health insurance, many of the gene-testing companies have programs that bring the cost down to $250 to $300.
Coverage of BRCA testing for women is required under the Affordable Care Act, although the fate of the law is uncertain. The U.S. Supreme Court is set to hear arguments on whether the ACA is constitutional after the election in November.
Coverage for other gene mutations is optional, but has grown in recent years, according to Lisa Schlager, vice president of public policy at the hereditary cancer advocacy organization FORCE, which stands for Facing Our Risk of Cancer Empowered.
"They do [cover testing] for the most part, but it can incur or involve out-of-pocket costs," she said.
Then there are direct-to-consumer companies like 23andMe and Ancestry. Generally, direct-to-consumer tests are not part of recommended clinical practice, according to the National Cancer Institute.
"If they are not done through a doctor in an approved lab, there is potential for errors," Komen's Brown explained.
Some tests may only check for a few mutations.
"You may make a decision and have an understanding of your risk based on incomplete information," she said.
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For $179, AncestryHealth offers testing for genetic risks and says it can detect 80% or more of known DNA differences linked to certain cancers.
"AncestryHealth includes laboratory tests developed and performed by an independent CLIA-certified laboratory partner, and with oversight from an independent clinician network of board-certified physicians and genetic counselors," its website states.
Meanwhile, 23andMe's Health + Ancestry service includes testing for selected variants of BRCA1 and BRCA2.
"23andMe standards for accuracy are incredibly high," the company said in a statement. "Detailed analytical testing through the FDA review process showed that our Genetic Health Risk and Carrier Status reports meet accuracy thresholds of 99 percent or higher."
If you are found to have a so-called "cancer-gene," you generally will start undergoing annual cancer screenings. You may also opt for preventive, or prophylactic, surgery — typically a mastectomy or hysterectomy.
The costs and amount of insurance coverage — if you have any — vary widely.
Heather Horton, 35, and her mother, 63-year-old Sue Williams, have had two vastly different experiences.
The pair, who live in Portland, Oregon, both have the MLH1 mutation, another gene that falls under Lynch Syndrome.
Williams found out at the age of 54, after her brother was diagnosed with colon cancer in his 40s. She's had no issue with her coverage. She had a preventative hysterectomy and now undergoes regular colonoscopies and endoscopies, which cost her $20 after insurance. She pays $812 a month for her policy.
Horton, on the other hand, has become an expert at reading medical bills and understanding coding after spending a lot of time challenging charges.
Diagnosed at 28 years old, Horton gets the same screenings as her mom, plus ultrasounds, a blood test and an endometrial biopsy to monitor her uterus and ovaries. Over the years, her annual screening costs have run from about $800 to $2,500, with around $1,500 being the norm. Her monthly premium is about $520 for a family plan.
"One of the biggest challenges is [that] it's hard to really track or budget for, because I can't ever really estimate what the expenses are going to be," Horton said.
Health insurers aren't required to cover cancer screenings, beyond what is mandated by the ACA, which is focused on the "average risk" population. That leads many to struggle to get coverage for earlier, more intensive screenings and risk-reducing surgeries, according to FORCE.
While insurance typically covers the surveillance, those who have high-deductible plans may still wind up with a hefty bill, said FORCE's Schlager.
"We are testing people but not empowering them with easy access, necessarily, to the follow-up care," she said.
Medicare doesn't cover preventive care, unless authorized by Congress. Right now, those over 50 years old can get screening colonoscopies covered and those over 40 can get screening mammograms — as well as a baseline between the ages of 35-39. However, anyone younger on Medicare, such as those with disabilities, won't be covered.
Medicare also doesn't cover breast MRIs, which doctors recommend for those with a high breast cancer risk, as well as preventive surgeries, Schlager said.
She's currently working on legislation with Sen. Lisa Murkowski, R-Alaska, and Rep. Debbie Wasserman Schultz, D-Florida, to amend the Medicare statute to broaden the preventive cancer screenings.
Medicaid coverage for screenings is more difficult to track, since it varies by state. All but three state programs cover BRCA testing and most cover testing for Lynch Syndrome. Less than a handful cover multigene panel testing, Schlager said. She recommends checking with your state's Medicaid office to find out what's available.
"Our whole health system is focused on treatment," Schlager said.
"If we were to flip that and focus on prevention, we would probably save the system a lot of money long-term. But we are just not there yet."
While there may be costs with cancer screenings, it is better than the alternative: not catching cancer early and paying for costly treatments.
"It is really managing your destiny as far as your health," said Susan Dallas, executive director of Lynch Syndrome International.
Her father passed away from pancreatic cancer when she was four years old. At 43, Dallas was diagnosed with colon cancer, and subsequently, Lynch Syndrome, which includes genes MLHL, MSH2, MSH6, PMS2, and EPCAM.
"If you don't know what you are dealing with, you can't possibly know what your potential cost could be down the road," Dallas said.
"It could save you thousands and thousands of dollars, not to mention the heartache, stress and loss of income because you end up with cancer."
In fact, a new report from the American Cancer Society Cancer Action Network titled "The Costs of Cancer" found that U.S. cancer patients spent $5.6 billion in out-of-pocket costs for cancer treatment in 2018. Those with ACA-compliant coverage paid between $5,000 out-of-pocket in a large employer plan to over $12,000 in an individual marketplace plan. Short-term limited duration plan patients paid $52,000.
Despite the frustrations she has encountered, Horton doesn't regret getting tested.
"Knowledge is power. We do have some of this within our control to stay on top of it," she said.
"There is some comfort in that, than just kind of waiting for some symptom to appear."
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