Lifesaving Test Held Up by Paperwork

Feb. 28, 2008 — -- When "Good Morning America" found out that a sick 4-year-old boy couldn't get the genetic test he needed for his life-threatening heart condition, we got answers.

C.J. Lafortune suffers from a rare heart condition known as long QT, which affects approximately one in 3,000 people.

Though the health-care community widely recognizes the need for an expensive test to better diagnosis long QT, C.J.'s parents use Medicaid and ran up against a wall of paperwork trying to get the cost covered.

The one lab in the country that offers the test is in Connecticut, and was not certified with New York state. Since every procedure for Medicaid in New York needs a permit, C.J.'s test was being dangerously held up, until "GMA" stepped in.

Parents' Nightmare

In August Marie and Claudy Lafortune thought they had lost their little boy C.J. forever.

Marie heard a noise and went to check on C.J. At first she thought she was having a nightmare.

"He started shaking, moving his head in a strange way. … After a short while less than two minutes, he just stopped breathing. That's when everything went crazy. We called 911," said Marie.

Luckily C.J. began breathing again soon, but at the hospital Marie and Claudy got some bad news. He had suffered cardiac arrest, caused by a heart disorder called long QT.

"Since then, basically, my son, I have to keep him really close to me. I'm afraid when he goes to sleep, I'm afraid to leave him. So it's tough dealing with what's going on, its really tough," said Marie.

Medically Necessary Test

There are three main types of the syndrome, and if not treated specifically, the consequences can be deadly.

Dr. Wendy Chung explained that C.J. needed a special genetic test to determine which variety of long QT he had.

"Individuals that have this can actually lead completely healthy normal lives, but just suddenly boom one day drop dead out of the blue without any warning," said Chung.

"The risk of not having the genetic test is that C.J. could be overtreated, he could be more aggressively treated or he could be treated with the wrong medication and he could still be vulnerable at risk to suddenly die," she said.

Clinical Data is the only lab in the country that offers the test, which costs $5,400. Marie and Claudy Lafortune can't afford that, but hoped that because C.J. is a Medicaid patient, the state would pay.

Health-Care Roadblock

Even though this test has been accepted by the medical community for years and is funded by many private insurers, when it came to Medicaid patients in New York state, the lab hit a roadblock.

"Any test done on any state residents' specimens from New York state has to have a permit," said Richard Daines, commissioner of the New York State Health Department.

It turned out the lab was not certified to do the test for New York state Medicaid patients.

Daines says the process is simple, but although the lab applied in November for a permit, "GMA" learned the application had stalled because of paperwork issues. Meanwhile, the clock was ticking on little C.J.

"Time is running, by running I mean I would like my son to at least have the test done when he's healthy and running around," said Marie at the time.

Clinical Data told us it blamed the approval delay on Medicaid. It said that it had been accepted by 13 other state Medicaid programs already, but the application process in New York was way too complicated.

"GMA's" Chris Cuomo asked Daines, "Why isn't it the state that finds people who can administer this test, to help their residents as apposed to waiting for labs to come to them and go through the certification process?

"To take one particular test and say we should proactively go around the country looking for labs that we can give permits to, just isn't the way it works," said Daines.

Daines said, "The company's bureaucracy might be onerous," but it wasn't necessarily the state's bureaucracy that was holding things up.

"Labs all over New York go through the permitting process for genetic testing and other testing and other testing. Its not magic. It's not difficult to do."

'GMA' Gets Answers

Blame game aside, this was a situation that needed to change. Clinical Data is the only lab testing for a syndrome that kills 1,000 kids and young adults each year.

"GMA" relayed New York state's precise issues to the Connecticut lab and the lab responded. Sure enough, progress was made. After our interview, New York state told us it expected to now approve the lab's application.

Now there's even better news for C.J. Medicaid told us about an emergency permit that would allow C.J. to take the test, even though the lab was not yet an approved New York state Medicaid provider.

So we sent the relevant medical paperwork to the state. Now Medicaid says C.J. can get the test immediately.

"I feel like I'm in a dream. I want some one to wake me up," Marie said, responding to the news. "There were so many barriers [and] policies, guidelines so when you try to do something like that on your own I don't think you get anywhere," she said. "We are not saying that this test is the answer, but we know that this test can bring a lot of answers to us … by that I mean the best health care he deserves."

There's a long way to go still, with 37 states left that need to approve the test.

New York State Department of Health says that as long as the lab does its paperwork right, its application to treat the state's Medicaid patients will likely be approved in no more than 30 days.

Statement from the New York State Department of Health:

"It was as a result of GMA faxing information to the NYS Department of Health on Friday that provided information about the patient and his medical need for a Long QT genetic test, that the department was able to quickly approve the use of this laboratory to perform the child's test. The only other thing we needed was a prescription for the test from the treating physician, who sent the department the prescription on Monday and Medicaid coverage was approved."

Find out more about long QT at www.careforhearts.org or www.mayoclinic.com.

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