When Matt Christman watches his kids play soccer every week in northeast Indiana, he harbors a nagging worry that one of them will suddenly collapse and die of a heart attack.
Christman, 37, of Huntington, has hypertrophic cardiomyopathy, an inherited condition that kills at least 1,600 people in the United States annually. Among its victims are Boston Celtic Reggie Lewis, who died on a basketball court at 27, and Loyola Marymount University basketball star Hank Gathers.
Implanted under Christmans skin is a device that detects and jolts away abnormal heart rhythms. He cant walk 300 feet without having to stop and rest. Fluid is building up in his abdomen, making it difficult to breathe.
Each of Christmans seven children has a 50 percent chance theyll have the same disorder, and a $500 genetic test could tell them.
His health insurer wont pay for it.
For some people, the first symptom of this is cardiac arrest – they drop dead on the soccer field, the basketball court, Christman said, sitting in his living room while his kids, all 12 years old and younger, played around him.
We have a chance to be a step ahead of the game here. You just think its a no-brainer for the insurance company.
Its far from a no-brainer. As genetic testing spreads, revolutionizing how doctors recognize and treat illness, the insurance industry is in a muddle. A genetic test that one insurer calls actionable, another considers unnecessary. Some will pay only to test sick patients but not to find out whos at risk of a disease.
Anthem Blue Cross Blue Shield, the WellPoint Inc. unit that covers Christman through his employer, wont pay for the test, even though it will cover the more expensive alternative: annual heart scans that will cost about $12,000 a child over the next six years.
At the root of insurer resistance is concern over costs. U.S. spending on genetic tests will balloon fivefold to as much as $25 billion in the next decade, from $5 billion in 2010, according to UnitedHealth Group Inc., the countrys largest insurance company covering 36 million people.
A majority of the 1,300 DNA tests developed to identify or manage medical conditions still havent been studied enough to prove their effectiveness or cost savings, UnitedHealth said in a report released in March.
The concern is that the tests will send you down blind alleys, said Reed Tuckson, UnitedHealths executive vice president and chief of medical affairs. Thats something you wouldnt want for anyone. And it takes the costs of care through the roof.
Fearing for kids
Matt Christman came around to score from second in a 2004 softball game when he noticed something unusual: he was out of breath and light-headed. While it didnt seem important at the time, Christman discovered the reason at his next checkup. He had a heart murmur.
An echocardiogram, an ultrasound image of the heart, revealed telltale thickening in the wall. Abnormal growth in the heart wall of patients with hypertrophic cardiomyopathy garbles electrical signals that keep blood pumping normally. The scrambled impulses can lead to irregular heart rhythms that can cause cardiac arrest.
About 620,000 Americans have the condition, according to the Hypertrophic Cardiomyopathy Association, a patient group. A 2009 study in the journal Circulation reported that it killed 251 young athletes from 1980 through 2006.
Soon after being diagnosed, Christman had a device implanted under his skin that detects abnormal heart rhythms and can shock his heart back to a normal pace if necessary. Christmans mother, aunt and sister were also tested and found to harbor the same mutation. They also began getting preventive treatment.
Over the past year, Christmans concern turned to his children.
The family lives next door to the farm where his wife, Christina, grew up and her parents still live. The children have worn a path to their grandparents farm. The oldest three – Alexandria, 12, Luke, 11 and Marianne, 10 – make the 300-yard walk daily to do chores and 4-H club activities, such as training sheep.
While home-schooled, the Christman children play in basketball and soccer leagues. Marianne said she dreams of taking ballet lessons. Luke goes on hiking trips with the Boy Scouts, far from the protective view of his parents.
In November, Michael Mirro, Christmans cardiologist, recommended that the three oldest children should be tested for the mutation. All three are on the verge of adolescence, when hypertrophic cardiomyopathy often appears without warning.
If the children couldnt get the genetic test, Mirro said he would recommend that they all undergo annual echocardiogram imaging to check for thickening of the heart wall. Thats a cost of at least $12,000 a child over the next six years. For a few hundred dollars, the insurer might avoid those procedures.
Mirros point of view is backed by the American Heart Association and the American College of Cardiology, the biggest U.S. groups of heart doctors. Their 2011 consensus statement calls for genetic testing in close relatives of people with hypertrophic cardiomyopathy.
Christman thought WellPoint would be persuaded.
I thought there was a pretty good chance they would cover it, he recalled.
Medical studies we have seen do not show that this testing is likely to improve your treatment and health, according to a letter Christman received from the insurance company.
WellPoint has a medical advisory board of about 20 doctors that meets four times a year to review its medical policies, including its stance on genetic testing for hypertrophic cardiomyopathy.
Redberg, the UCSF cardiologist who sits on the panel, says she never uses the genetic test for that particular condition. The test doesnt clearly identify which patients need follow-up treatment and which are no longer at risk of heart disease, she said. Wellpoint declined to discuss specific cases.
Inaccurate positive tests can be just as damaging to patients, unnecessarily burdening them with the idea that theyre at risk of sudden death and cant play sports or engage in beneficial exercise, she said.
Before you start advising people that they might drop dead, you want to make sure that this test is absolutely correct, she said. You want the family history, a clinical assessment and an echocardiogram. I dont think the genetic test adds to that.
Aetna Inc. takes an opposite view. The Hartford, Conn.-based insurer has routinely covered testing for hypertrophic cardiomyopathy in patients closest relatives since November 2010, according to company documents.
The test can help save money and feeds into important medical and personal decision for patients, said Bob McDonough, head of clinical policy research and development at Aetna.
With any new genetic test, we want to make sure that what were getting is more than just interesting data, McDonough said. This test gives us actionable information.
Not giving up
As he waited for word from WellPoint, Christman began developing additional health problems. The defibrillator implanted in his chest indicated he was having more frequent abnormal heart rhythms.
He began having increased fatigue and breathlessness and began to suffer from edema, or fluid retention, in his belly that feels like a a boa constrictor.
Chores like mowing the lawn became too strenuous, and even risky for Christman, so his wife took them on. He continued to watch his children run and play, his concern rising.
Mirro fired off a letter to WellPoint, explaining the necessity of the testing and the cost savings. In March, WellPoint denied the testing again. Mirro drafted another letter and called the company on the phone.
In April, WellPoint sent a third round of letters denying the Christmans testing request. The letter said that the company had completed its review of their appeal and repeated that the test is experimental and not medically necessary.
The Christmans can continue to appeal, WellPoint spokeswoman Lori McLaughlin said in an email.
A civil engineer, Christman makes about $60,000 annually. Baffled by WellPoints refusal to pay for a test his doctor says is critical, he plans to spend $1,500 to have his three oldest children tested if the insurance company persists.
Christman said hes most concerned about his 7-year-old son Benjamin, whos already shown signs that hes more interested in athletics than the others.
I live every day with the concern about what their future holds, he said.