That’s enough to ensure he can get the treatment he needs, said Dr. , an eye surgeon with Charlotte Eye, Ear, Nose and Throat Associates. After reading Luis Lang’s story in the Observer on Wednesday, Antoszyk said he’d work with Lang and with to give him the care at reduced cost.

Lang, a self-employed handyman, declined to get health insurance until he needed expensive surgery for diabetes-related eye problems. His story went viral, spurring blogs and comments, , thousands of social media shares and vigorous discussions across the country.

His page has been shared on social media more than 1,700 times since Tuesday morning, with more than 600 people making small donations, often with political commentary.

“No one should be without medical (care) even if they have not made their own best choices in life,” wrote Steve Kadel, who gave $10. “The party of personal responsibility (has) left you hanging on your own consequences. Progressives like me think that’s just cruel. Be well.”

Lang told me he chose to pay his own medical bills while he and his wife were relatively healthy. He tried to sign up for subsidized ACA coverage only after a health crisis in February. He couldn’t get it and blamed the president and congressional Democrats for his plight.

Thousands of commenters told him to suck it up and take care of himself, noting that he lives in a home valued at more than $300,000, that his wife doesn’t work and that his smoking and lack of attention to his diabetes contributed to his problems.

Others said he should blame the South Carolina Republicans who, like GOP leaders in 20 other states, including North Carolina, have declined the federal money that was supposed to extend Medicaid to impoverished adults. Lang says he has been unable to work because of vision problems. People who fall below the poverty level – $15,730 a year for a couple – can’t get subsidies to buy private insurance, and most don’t qualify for Medicaid in states that refused the federal expansion money.

Lang said Wednesday morning that the donations will let him pay for a surgeon’s consultation and start the process of getting treatment for bleeding in his eyes and a partially detached retina. Dr. Mark Edwards, the Lancaster, S.C., ophthalmologist who examined Lang, said Lang will go blind without surgery and follow-up treatment.

Lang said he was told the total cost could be $15,000 to $30,000, though Edwards said it’s hard to make a firm estimate without involving a surgeon. Antoszyk agreed that he needs to do an assessment to be sure of the cost. But earlier Wednesday, with the fundraising total at $8,500, Antoszyk said, “I think we should be able to do that.”

I had warned Lang on Monday that his story was likely to spur criticism of him and his decisions, but neither one of us was prepared for the scope and intensity of reactions. While many commenters were gracious, others were abusive. Lang’s wife, Mary, says she got a threatening phone call at their home Tuesday.

“It turned into a political thing,” Lang said. “That wasn’t my intention when I reached out. This is ridiculous.”

So has he learned anything from this experience?

“I did,” he said.

Although there has been extensive coverage of the Affordable Care Act since it was passed in 2010, Lang, who gets his news from local TV and the Internet, didn’t know about the or that income fluctuations to calculate subsidies. He believes his case has helped people understand that.

“I hold the whole government responsible for this, state and federal,” he said. Greed from medical providers and the government also add to the flaws in the system, Lang said.

Does he hold himself responsible? There was a short pause.

“I do hold myself partly responsible because of the view that I had. I should have taken better care of my sugar,” he said. “Yeah, I should have had insurance.”

He noted that some donors have asked what he thinks of the fact that liberals, rather than conservatives, are helping him.

“I look at a person as a person,” he said. “People are acting from the heart, just like I have done in the past.”

Mostly, he says, he’s overwhelmed by the attention his story has gotten.

“The Charlotte Observer should give me a free subscription now,” he quipped.

This blog post comes from , produced in partnership with KHN.

This <a target="_blank" href="/public-health/sc-man-will-get-sight-saving-surgery-as-liberal-donors-chip-in/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

But by the time the White House response arrived, Welborn was in a frenzy. A government error in her 2015 renewal led to the cancellation of her policy, which she discovered only when she tried to fill her February prescription.

As days ticked by without the needed medication, Welborn couldn’t get anyone at the insurance company or the federal exchange to resolve the problem.

“It’s just the perfect storm of mistakes and nobody can fix them,” she said. “I feel absolutely wiped out by this battle.”

Welborn’s quandary illustrates not only the benefit of the act but an ongoing challenge.

N.C. health insurance officials say complaints dropped in 2014, even as a problem-plagued federal website debuted and the ranks of the insured swelled. That’s because people like Welborn, previously denied insurance for expensive medical conditions, had accounted for the bulk of calls before the act took effect. Starting last year they had a guarantee of coverage and, in many cases, federal aid to help pay for it.

The catch? When you pair private insurance companies seeing a surge of customers with a federal agency making millions of monthly payments, small mistakes can spiral into massive headaches. Some customers report spending hours on the phone trying to get the two bureaucracies to work together.

“The process stinks,” said Hardie Steitz of Charlotte, who spent more than 50 hours trying to resolve a problem that remains under appeal. “Insurance companies are run like a business. The Affordable Care Act is run like the government. How do you merge those two philosophies together to get a working relationship?”

The N.C. Department of Insurance can help customers get both groups on the line to hash out issues. But Susan Nestor, director of the department’s Health Insurance Smart NC program, said her staff can’t make it quick and easy.

“To your consumers who say it takes a lot of time, we’d say, ‘Yeah. That’s exactly what we’ve found,’” she said.

As some customer-service challenges related to the ACA are resolved, new ones emerge. Website failures that nearly torpedoed the system’s start-up in fall 2013 were largely gone a year later when 2015 sign-ups began. But Smart NC saw a spike of calls in September and October, as customers got renewal rates – sometimes with big hikes – and had to decide whether to switch plans.

Now people with subsidized insurance are filing 2014 tax returns, which can bring surprises about how much they owe. Meanwhile, people who remain uninsured and are hit with a 2014 tax penalty might qualify for one more chance to enroll this spring.

A costly lifeline

Thirteen years ago, Welborn was diagnosed with , a cancer of the blood. Her doctor put her on Gleevec, a pill that has greatly extended survival. But that victory comes at a cost: Welborn says the drug runs $9,284 a month, or about $111,400 a year, almost double what she paid initially.

Gleevec has become emblematic of one of the of controlling health care costs. High-priced specialty drugs accounted for about 1 percent of all prescriptions in 2013 but more than 25 percent of pharmacy spending. Costs keep rising, even as new drugs come online.

For years, Welborn, a writer who now works grading exams, got coverage on her husband’s insurance. But she’s divorced now, so she was thrilled when she went to the ACA exchange in 2014 and got a $764-a-month policy from Blue Cross and Blue Shield of North Carolina. She paid $327, with the federal government making up the difference. By year’s end she had paid about $9,000 out of pocket for all her medical costs. She thought that was a good deal.

Greg Stephens, executive director of the Birmingham-based , agrees. “For most patients we’re still having substantial co-pays – $2,000, $3,000 a month,” he said. While the ACA mandates prescription drug coverage, he said, each policy has its own complexities.

“Some days,” Stephens said, “I’m just as confused as the first day this came out.”

Trouble begins

Last November, Welborn called the federal exchange to update her income for calculating her 2015 subsidy. Her monthly payment rose to $493 and her out-of-pocket costs went up.

But Welborn was still so grateful she wrote the president a thank-you letter.

Her January bill from Blue Cross was for the full premium, $907. Welborn paid her share and sent the company a note saying the government should be covering the rest. When she tried to fill her February prescription, she says, the mail-order company said her policy had been canceled.

Welborn began calling the exchange and Blue Cross. By Feb. 20, she said she had spoken to six ACA customer representatives, two supervisors, a specialized caseworker and the federal government’s Advanced Resource Center. At Blue Cross she had been through three customer reps, two supervisors and the vice president of customer service.

And she wasn’t getting answers. The insurance company said the problem came from the federal exchange. The government staff kept saying things like, “The computer won’t let me fix the problem.”

Some help, new issues

Welborn’s policy was restored after the Observer contacted Blue Cross and the U.S. Department of Health and Human Services.

A federal spokeswoman said she couldn’t discuss Welborn’s situation but assured a reporter it was being straightened out. Shortly afterward, Blue Cross told Welborn her subsidy and her policy had been reinstated.

Blue Cross spokeswoman Ryan Vulcan said last week that the federal marketplace sent two files on Welborn, one with a subsidy and one without. The second submission overrode the first, Vulcan said, so when the marketplace sent a cancellation, apparently trying to eliminate the duplication, the company dropped the only policy it still had on file.

Vulcan says Blue Cross should have sent a cancellation letter, but Welborn says she never got one.

There was also a new twist: Blue Cross said in reviewing Welborn’s records, the company discovered she had missed a payment in 2014. Welborn disagrees, and she says she’s baffled by the series of bills she has gotten.

In the first three months of this year, Welborn got three bills for amounts ranging from $741 to $1,814, without explanation of the varying totals. The oddest came on March 4, when she was told to pay $1,614 to cover “1/01/15 to 1/01/15.”

Welborn says she’s through wrangling. She will become eligible for Medicare when she turns 65 in May, and she plans to wait it out.

Early in her struggle, Welborn told her story in an online forum for people with her disease. A woman in Massachusetts who had just switched medications sent her a month’s supply of Gleevec.

Welborn is using that to tide her over, and hopes to get another month’s supply from the manufacturer’s assistance program for the uninsured.

“Sometimes you’ve got to acknowledge defeat,” she said. “Sometimes things are too big.”

This <a target="_blank" href="/insurance/errors-can-turn-affordable-care-benefits-to-customer-torment/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

“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 , 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 . “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 . 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 , 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 , 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.”

This <a target="_blank" href="/news/north-carolinian-credits-early-cancer-diagnosis-to-new-health-coverage/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

That’s enough to ensure he can get the treatment he needs, said Dr. , an eye surgeon with Charlotte Eye, Ear, Nose and Throat Associates. After reading Luis Lang’s story in the Observer on Wednesday, Antoszyk said he’d work with Lang and with to give him the care at reduced cost.

Lang, a self-employed handyman, declined to get health insurance until he needed expensive surgery for diabetes-related eye problems. His story went viral, spurring blogs and comments, , thousands of social media shares and vigorous discussions across the country.

His page has been shared on social media more than 1,700 times since Tuesday morning, with more than 600 people making small donations, often with political commentary.

“No one should be without medical (care) even if they have not made their own best choices in life,” wrote Steve Kadel, who gave $10. “The party of personal responsibility (has) left you hanging on your own consequences. Progressives like me think that’s just cruel. Be well.”

Lang told me he chose to pay his own medical bills while he and his wife were relatively healthy. He tried to sign up for subsidized ACA coverage only after a health crisis in February. He couldn’t get it and blamed the president and congressional Democrats for his plight.

Thousands of commenters told him to suck it up and take care of himself, noting that he lives in a home valued at more than $300,000, that his wife doesn’t work and that his smoking and lack of attention to his diabetes contributed to his problems.

Others said he should blame the South Carolina Republicans who, like GOP leaders in 20 other states, including North Carolina, have declined the federal money that was supposed to extend Medicaid to impoverished adults. Lang says he has been unable to work because of vision problems. People who fall below the poverty level – $15,730 a year for a couple – can’t get subsidies to buy private insurance, and most don’t qualify for Medicaid in states that refused the federal expansion money.

Lang said Wednesday morning that the donations will let him pay for a surgeon’s consultation and start the process of getting treatment for bleeding in his eyes and a partially detached retina. Dr. Mark Edwards, the Lancaster, S.C., ophthalmologist who examined Lang, said Lang will go blind without surgery and follow-up treatment.

Lang said he was told the total cost could be $15,000 to $30,000, though Edwards said it’s hard to make a firm estimate without involving a surgeon. Antoszyk agreed that he needs to do an assessment to be sure of the cost. But earlier Wednesday, with the fundraising total at $8,500, Antoszyk said, “I think we should be able to do that.”

I had warned Lang on Monday that his story was likely to spur criticism of him and his decisions, but neither one of us was prepared for the scope and intensity of reactions. While many commenters were gracious, others were abusive. Lang’s wife, Mary, says she got a threatening phone call at their home Tuesday.

“It turned into a political thing,” Lang said. “That wasn’t my intention when I reached out. This is ridiculous.”

So has he learned anything from this experience?

“I did,” he said.

Although there has been extensive coverage of the Affordable Care Act since it was passed in 2010, Lang, who gets his news from local TV and the Internet, didn’t know about the or that income fluctuations to calculate subsidies. He believes his case has helped people understand that.

“I hold the whole government responsible for this, state and federal,” he said. Greed from medical providers and the government also add to the flaws in the system, Lang said.

Does he hold himself responsible? There was a short pause.

“I do hold myself partly responsible because of the view that I had. I should have taken better care of my sugar,” he said. “Yeah, I should have had insurance.”

He noted that some donors have asked what he thinks of the fact that liberals, rather than conservatives, are helping him.

“I look at a person as a person,” he said. “People are acting from the heart, just like I have done in the past.”

Mostly, he says, he’s overwhelmed by the attention his story has gotten.

“The Charlotte Observer should give me a free subscription now,” he quipped.

This blog post comes from , produced in partnership with KHN.

This <a target="_blank" href="/public-health/sc-man-will-get-sight-saving-surgery-as-liberal-donors-chip-in/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

But by the time the White House response arrived, Welborn was in a frenzy. A government error in her 2015 renewal led to the cancellation of her policy, which she discovered only when she tried to fill her February prescription.

As days ticked by without the needed medication, Welborn couldn’t get anyone at the insurance company or the federal exchange to resolve the problem.

“It’s just the perfect storm of mistakes and nobody can fix them,” she said. “I feel absolutely wiped out by this battle.”

Welborn’s quandary illustrates not only the benefit of the act but an ongoing challenge.

N.C. health insurance officials say complaints dropped in 2014, even as a problem-plagued federal website debuted and the ranks of the insured swelled. That’s because people like Welborn, previously denied insurance for expensive medical conditions, had accounted for the bulk of calls before the act took effect. Starting last year they had a guarantee of coverage and, in many cases, federal aid to help pay for it.

The catch? When you pair private insurance companies seeing a surge of customers with a federal agency making millions of monthly payments, small mistakes can spiral into massive headaches. Some customers report spending hours on the phone trying to get the two bureaucracies to work together.

“The process stinks,” said Hardie Steitz of Charlotte, who spent more than 50 hours trying to resolve a problem that remains under appeal. “Insurance companies are run like a business. The Affordable Care Act is run like the government. How do you merge those two philosophies together to get a working relationship?”

The N.C. Department of Insurance can help customers get both groups on the line to hash out issues. But Susan Nestor, director of the department’s Health Insurance Smart NC program, said her staff can’t make it quick and easy.

“To your consumers who say it takes a lot of time, we’d say, ‘Yeah. That’s exactly what we’ve found,’” she said.

As some customer-service challenges related to the ACA are resolved, new ones emerge. Website failures that nearly torpedoed the system’s start-up in fall 2013 were largely gone a year later when 2015 sign-ups began. But Smart NC saw a spike of calls in September and October, as customers got renewal rates – sometimes with big hikes – and had to decide whether to switch plans.

Now people with subsidized insurance are filing 2014 tax returns, which can bring surprises about how much they owe. Meanwhile, people who remain uninsured and are hit with a 2014 tax penalty might qualify for one more chance to enroll this spring.

A costly lifeline

Thirteen years ago, Welborn was diagnosed with , a cancer of the blood. Her doctor put her on Gleevec, a pill that has greatly extended survival. But that victory comes at a cost: Welborn says the drug runs $9,284 a month, or about $111,400 a year, almost double what she paid initially.

Gleevec has become emblematic of one of the of controlling health care costs. High-priced specialty drugs accounted for about 1 percent of all prescriptions in 2013 but more than 25 percent of pharmacy spending. Costs keep rising, even as new drugs come online.

For years, Welborn, a writer who now works grading exams, got coverage on her husband’s insurance. But she’s divorced now, so she was thrilled when she went to the ACA exchange in 2014 and got a $764-a-month policy from Blue Cross and Blue Shield of North Carolina. She paid $327, with the federal government making up the difference. By year’s end she had paid about $9,000 out of pocket for all her medical costs. She thought that was a good deal.

Greg Stephens, executive director of the Birmingham-based , agrees. “For most patients we’re still having substantial co-pays – $2,000, $3,000 a month,” he said. While the ACA mandates prescription drug coverage, he said, each policy has its own complexities.

“Some days,” Stephens said, “I’m just as confused as the first day this came out.”

Trouble begins

Last November, Welborn called the federal exchange to update her income for calculating her 2015 subsidy. Her monthly payment rose to $493 and her out-of-pocket costs went up.

But Welborn was still so grateful she wrote the president a thank-you letter.

Her January bill from Blue Cross was for the full premium, $907. Welborn paid her share and sent the company a note saying the government should be covering the rest. When she tried to fill her February prescription, she says, the mail-order company said her policy had been canceled.

Welborn began calling the exchange and Blue Cross. By Feb. 20, she said she had spoken to six ACA customer representatives, two supervisors, a specialized caseworker and the federal government’s Advanced Resource Center. At Blue Cross she had been through three customer reps, two supervisors and the vice president of customer service.

And she wasn’t getting answers. The insurance company said the problem came from the federal exchange. The government staff kept saying things like, “The computer won’t let me fix the problem.”

Some help, new issues

Welborn’s policy was restored after the Observer contacted Blue Cross and the U.S. Department of Health and Human Services.

A federal spokeswoman said she couldn’t discuss Welborn’s situation but assured a reporter it was being straightened out. Shortly afterward, Blue Cross told Welborn her subsidy and her policy had been reinstated.

Blue Cross spokeswoman Ryan Vulcan said last week that the federal marketplace sent two files on Welborn, one with a subsidy and one without. The second submission overrode the first, Vulcan said, so when the marketplace sent a cancellation, apparently trying to eliminate the duplication, the company dropped the only policy it still had on file.

Vulcan says Blue Cross should have sent a cancellation letter, but Welborn says she never got one.

There was also a new twist: Blue Cross said in reviewing Welborn’s records, the company discovered she had missed a payment in 2014. Welborn disagrees, and she says she’s baffled by the series of bills she has gotten.

In the first three months of this year, Welborn got three bills for amounts ranging from $741 to $1,814, without explanation of the varying totals. The oddest came on March 4, when she was told to pay $1,614 to cover “1/01/15 to 1/01/15.”

Welborn says she’s through wrangling. She will become eligible for Medicare when she turns 65 in May, and she plans to wait it out.

Early in her struggle, Welborn told her story in an online forum for people with her disease. A woman in Massachusetts who had just switched medications sent her a month’s supply of Gleevec.

Welborn is using that to tide her over, and hopes to get another month’s supply from the manufacturer’s assistance program for the uninsured.

“Sometimes you’ve got to acknowledge defeat,” she said. “Sometimes things are too big.”

This <a target="_blank" href="/insurance/errors-can-turn-affordable-care-benefits-to-customer-torment/">article</a&gt; first appeared on <a target="_blank" href="">KFF Health News</a> and is republished here under a <a target="_blank" href=" Commons Attribution-NonCommercial-NoDerivatives 4.0 International License</a>.<img src="/wp-content/uploads/sites/8/2023/04/kffhealthnews-icon.png?w=150&quot; style="width:1em;height:1em;margin-left:10px;">

“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 , 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 . “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 . 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 , 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 , 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.”

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