In March, after Kimberly Tonyan got health insurance through the Affordable Care Act exchange, she spoke at a news conference urging others to enroll. Her 11-year-old twins stood at her side in Raleigh, N.C.
“You have nothing to lose,” the Cornelius woman said, “but your life.”
Little did she know.
A couple of months later, Tonyan (rhymes with “onion”) went to the doctor, complaining of abdominal pain. It was the start of a medical journey that led to an early cancer diagnosis and the discovery that she has Cowden syndrome, a rare genetic mutation that puts her at high risk for other cancers.
It’s been a tough year. She has one surgery behind her and another ahead. For the rest of her life she’ll be closely monitored.
But Tonyan wants to get the word out about the importance of getting insured and seeing a doctor. Despite the pain and anxiety, what matters most is that she has boosted her odds of seeing Caitlyn and Charlotte grow up.
“The Affordable Care Act saved my life,” says Tonyan, 41. “If you don’t have coverage, you need to get it.”
During the first year, 7.3 million people have gotten insurance through the ACA exchange. There have been problems, from a dismal debut of the website to confusion and controversy over high deductibles and limited networks of doctors in some plans.
But Tonyan illustrates what the law was designed to accomplish: Because she had insurance, she got care before her cancer advanced. While her care has been expensive, it headed off more costly procedures, such as chemotherapy and radiation. Had she been uninsured and unable to pay, those costs would eventually have been passed along to taxpayers and insured patients.
Because Cowden syndrome is hereditary, Tonyan’s oncologist says the diagnosis will also benefit her daughters and their descendents, who have a better chance of living long, healthy lives with proper care.
“We can prevent so many bad things from happening to people if we know they have the syndrome,” said Dr. Matt McDonald of Novant Health Gynecologic Oncology Associates. “She’s been given a gift that will help a lot of people she knows and a lot of people she’ll never meet.”
Insurance matters
When Tonyan got pregnant, she and her then-husband were uninsured. It was a difficult pregnancy and the twins came early. The babies spent nine days in the neonatal intensive care unit.
Tonyan says the couple got a bill for $89,000, and Carolinas HealthCare System sued when they couldn’t pay. They negotiated it down to about $22,000, which Tonyan’s family paid.
Tonyan, who has worked in the family business as a barber and cared for her girls as a divorced mother, hadn’t been able to afford insurance for years. She was initially skeptical about the Affordable Care Act. She’s registered as a Republican because “I don’t believe that the government should be involved in your life.” And she had heard about the hassles that bogged down the early weeks of the online insurance exchange.
But in December she made an appointment with Fara Soubouti, a health insurance navigator who works for Legal Services of Southern Piedmont. Tonyan learned that her income – about $20,000 from part-time caregiving, occasional barbering and working with family rental properties – qualified her for a good subsidy.
In about an hour, she had chosen a Blue Cross and Blue Shield plan with a $500 deductible. Tax credits would cover $279 a month and she’d pay $27.91.
Tonyan, who once won an award at Independence High for public speaking, told Soubouti she was so pleased with the experience she’d be glad to share it with others.
As the end of 2014 open enrollment neared in March, Tonyan spoke at news conferences in Charlotte and Raleigh. Her message: Health care isn’t political – it’s humanitarian. “Everybody deserves health care.”
Bad news
In May, Tonyan went to the doctor about pain in her lower abdomen. She ended up having a hysterectomy for uterine fibroid tumors and an ovarian cyst.
All indications were that both were benign. But when a pathologist examined her uterus after the surgery, a small spot of endometrial cancer was found in her uterine lining.
Her gynecologist referred her to McDonald for follow-up. Because the cancer had been removed before it began to spread, he said, there was no need for chemotherapy or radiation.
But he was concerned. Endometrial cancer is often found in women in their 60s or 70s, who start bleeding after they’ve gone through menopause. Because Tonyan was so young, McDonald suggested genetic testing.
Genetic counselor Christen Csuy (pronounced soo-ee) initially suspected another syndrome. But when she got a blood sample and ran a panel screening for nine genetic flaws linked to uterine or ovarian cancer, the diagnosis was Cowden syndrome, caused by a mutation in a PTEN gene that is supposed to produce a tumor-suppressing protein.
Many have heard of BRCA mutations, which greatly increase the risk of breast and ovarian cancer. They’re found in about 1 in 800 people, Csuy said. Actress Angelina Jolie revealed last year that she chose to have both breasts removed after learning she had a BRCA mutation that gave her an 87 percent chance of developing breast cancer.
The mutation that causes Cowden syndrome is much rarer, occurring in 1 in 200,000 (though experts suspect it’s underdiagnosed). It brings a similar risk of breast cancer: 85 percent for a woman with the mutation. There’s also an increased risk of thyroid, uterine and kidney cancer.
Facing the future
Tonyan was referred to Novant’s Cancer Risk Clinic, where specialists coordinate screening and treatment for people with high genetic risk.
A mammogram revealed a lump in Tonyan’s breast. She was relieved when a biopsy showed it was benign but has decided to have a preventive mastectomy. That surgery, while it may seem like an extreme option, is one of the few ways to actually prevent a likely cancer, as opposed to trying to catch it early, Csuy said.
A kidney scan revealed no problems, but doctors found multiple polyps in her stomach and colon. None were malignant, but one was deemed precancerous, so Tonyan will get a colonoscopy every year.
Caitlyn and Charlotte, who are identical twins, have a 50 percent chance of inheriting the mutation. When they reach their late teens they’ll decide whether to have genetic testing. Their doctors will know to start cancer screenings early if they test positive.
Tonyan recently finished training to launch a new career as a medical assistant. She had been job-hunting before her diagnosis. Now she suspects she’ll have to wait until she has recovered from her double mastectomy.
But at least she’s not facing massive debt. Her hysterectomy alone brought a bill for more than $40,000, she said.
Csuy said the genetic panel costs $3,500. She believes Tonyan could have gotten her surgery as charity care, but she questions whether someone without insurance would have gone ahead with the test that gave Tonyan a road map to cancer detection. “You don’t know where (her treatment) would have stopped,” Csuy said.
The next round of enrollment for subsidized health insurance starts Nov. 15. Tonyan, who seems upbeat despite her travails, says she’s eager to let people without insurance know how important it can be to seize the opportunity.
“If my story saves a life,” she says, “it would bring a lot of joy.”
