The company is making an “exception” for the three children, following a Bloomberg News story that described how some insurers refuse to pay for genetic testing. WellPoint’s Anthem Blue Cross Blue Shield unit had denied the children coverage for the test since December, calling it “experimental” and “not medically necessary.”
The children’s father, Matthew Christman of Huntington, said he wants to have the children tested before they become teenagers. Knowing which of them has the gene for the disorder will help the family determine who needs to be monitored for signs of a heart ailment that can cause irregular rhythms and sudden death, Christman said.
“We really just want to know which kids to watch,” he said in a telephone interview. “If we know which ones are likely to develop the disease someday, we can monitor their activities more closely and make sure they get appropriate testing. And the ones that don’t have the gene we won’t have to worry about so much.”
When asked to comment, Lori McLaughlin, a spokeswoman for Indianapolis-based WellPoint, referred to letters sent to Christman’s physician that said the company would pay for testing the three children.
Bio-Reference Labs Inc., based in Elmwood Park, N.J., offered to test the Christman children free of charge in response to the Bloomberg story. The company has sent test kits to Christman’s cardiologist, Michael Mirro, of Fort Wayne Cardiology in Indiana.
WellPoint has since offered to reimburse for the testing, said Amar Kamath, Bio-Reference’s vice president of marketing. His company’s test is certified by the Centers for Medicare & Medicaid Services under the standards of the Clinical Laboratories Improvements Act, he said. Bio-Reference charges about $350 for the test.
In families such as Christman’s, the test is more than 99 percent accurate in determining which children have a gene mutation that’s linked to heart disease, he said.
“When the test comes up positive, the question is simply at what age the disease shows up and how severe it will be,” Kamath said.
Christman has hypertrophic cardiomyopathy, a heart disorder that affects about 620,000 Americans and is among the leading killers of young athletes. It’s caused by a gene mutation that alters the construction of heart muscle. Each of Christman’s seven children has a 50 percent chance of inheriting the gene.
In hypertrophic cardiomyopathy, excess thickening of the heart wall leads to abnormal rhythms. Symptoms begin to appear during puberty, and Mirro recommended last year that Christman’s oldest three children - Alexandria, 12, Luke, 11, and Marianne, 10 - should be tested. WellPoint denied the Christmans’ request and an appeal in writing.
“They’re hoping that people will just give up and say you can’t fight the insurance company,” said Mirro, who called the insurer several times to argue for testing. “The Christmans realized that wouldn’t be the right thing to do.”
On July 2, WellPoint sent three letters to Mirro, one for each of the children. Each letter said the company was making an “exception” in its policies to cover testing of the individual child. Christman plans to have all seven children tested before they reach puberty.
The reversal “does not constitute an endorsement of the safety or efficacy of this service,” WellPoint said in the letters.
Several gene mutations may cause hypertrophic cardiomyopathy. Testing a person for all those defects can cost as much as $5,000. However, when doctors already know which mutation is the culprit in a family afflicted by the disease, as in the Christmans’ case, the cost of testing related individuals drops. People without disease-linked mutations usually don’t need annual heart scans, electrocardiograms, office visits and other follow-up testing, Mirro said.
“It’s a very specific and accurate test,” said Robert Nussbaum, chief of the division of medical genetics at the University of California, San Francisco. “When a child has a 50 percent chance of inheriting the disease, then the family is living under a cloud. This test can remove that uncertainty.”
The American Heart Association and the American College of Cardiology last year jointly recommended genetic testing for the children, siblings and other close relatives of people with hypertrophic cardiomyopathy.
In addition to paying for the Christman children’s tests, WellPoint should make its policies consistent with the recommendations of those medical groups, as some other insurers have, said Lisa Salberg, founder of the Hypertrophic Cardiomyopathy Association, a patient advocacy group based in Hibernia, N.J.
“These organizations recognize the role of genetic testing in families with hypertrophic cardiomyopathy,” she said in a telephone interview. “It’s sad that WellPoint won’t comply with the scientific proof.”
Aetna Inc., the Hartford, Conn.-based insurer, has paid for genetic testing in first-degree relatives of people with hypertrophic cardiomyopathy for two years, according to company documents.
Insurers are concerned about the costs of genetic tests. Annual U.S. costs for DNA testing will increase to $25 billion in the next 10 years from $5 billion in 2010, according to a report from UnitedHealth Group Inc., the biggest U.S. insurer. The company paid about $500 million for genetic tests in 2010, the study said.