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Little girl, big dangers A hyperallergic 4-year-old stays inside her house while her parents struggle to afford the uninsured treatments they believe keep their daughter alive

Lisa Lundy is a mother on a mission.

Her 4-year-old daughter, Anne, can't eat most foods without suffering a severe allergic reaction.

The common cold looms as a life-threatening illness.

Her teeth are brown and decaying and can't be repaired because of her allergies to chemicals.

Anne stays home most days, with her brothers, Luke, 9, and Noah, 6. They are home-schooled, in part to reduce the number of contaminants entering their Cheektowaga home.

Most weeks, Anne's only trip outside the home is to a doctor's sterile office.

Anne has extreme sensitivity to chemicals, her doctor says. Other experts say the condition cannot be scientifically proven.

So Lundy is fighting the medical establishment to recognize the condition, and to pay for the treatments she is convinced are keeping her daughter alive.

"If I starve my kid so she's malnourished, where would I end up? In jail," Lundy said. "How is it that the agencies and the insurance company can get away with doing the same thing to my kid and nothing's happening?"

Lundy and many others say the severe allergic reaction can be turned off by provoking an allergic response with an extract and administering a weaker dilution. But countless physicians say it's not a scientifically proven therapy.

It costs more than $2,000 each month for the tests, allergy extracts and other treatment by an environmental physician, she said. Their insurance won't pay for it. So Lundy and her husband, Randall, have spent about $60,000 on medical treatments since 2003.

They unsuccessfully appealed to the state Insurance Department, the state attorney general's office and the state Health Department on the grounds that state law requires mandated access to specialty medical care.

Lundy even filed a child welfare endangerment complaint against the insurance company for failing to provide medical services.

Univera Healthcare, the HMO covering the family, says it can't speak about individual clients. But it says its plan covers services by physicians who are board certified in their specialty by the American Board of Medical Specialties.

"If a physician is not a board-certified, recognized by American Board of Medical Specialties, they are not covered," said Dr. Jay Pomerantz, chief medical officer of Univera.

The board does not recognize environmental medicine. Since medicine is evolving, Pomerantz said Univera also regularly studies worldwide literature and medical studies in making decisions about coverage.

"The policies are continuously reviewed, every other year or sooner if need be," Pomerantz said.

That's not soon enough for Anne.

>Baby born prematurely

Anne's long road started in December 2001, when she was born two months prematurely. By March 2002, she cried after nursing, depending on what her mother had eaten.

Lundy started removing foods like corn, soy and milk from her diet. Each time she did, Anne improved, she said.

When Anne started eating solid foods, she often developed diarrhea, hives and eczema. For eight months, Lundy started every morning by making tapioca bread sticks that were free of gluten, eggs, milk, corn, soy, nuts, and rice.

Today, Anne swallows dozens of allergy extracts daily to keep her from reacting to foods and chemicals.

"Nobody would ever do this treatment unless you have to," Lundy said. "Financially it's just devastating."

Lundy fears that Anne may not make it to the next childhood milestone. She believes with proper diagnosis as an infant, her daughter could have been eating normally by now. And to her, that's a crime.

It's not that simple. The medical community is not in agreement on the diagnosis or treatment for food allergies and chemical sensitivities.

Proponents say they have the studies to back up the therapy. Mainstream medicine says those papers don't prove empirically that the treatments work.

"They want a double-blind control study in a peer review journal," said Dr. Doris Rapp, a former clinical assistant professor of pediatrics at Buffalo State College. "It is very hard to get an article published in a peer review journal."

Rapp practiced in Buffalo for many years and brought the environmental medicine field to the forefront with her New York Times best seller, "Is This Your Child?" The book described discovering and treating unrecognized allergies.

Rapp mentored Dr. Kalpana Patel, who has run into the same problems Rapp did. Insurance companies don't cover some of Patel's services, including those for Anne.

"We are ahead of our time," Patel maintains.

>Chiropractic example

The allergy field today practices firm and strong scientific, evidence-based medicine, said Dr. Stanley A. Schwartz, chief of the Division of Allergy, Immunology and Rheumatology of the University at Buffalo Department of Medicine.

Patients should consider the risk and the benefits to alternative therapies, he said.

"If someone can afford it and they want to try it and see if they get a benefit from them, fine," he said. "Often that has to be done on the patient's dime. The insurance company wants strict evidence that this works."

The question for Anne as well as health insurance companies is when does "alternative therapy" become mainstream treatment?

Years ago, most insurance companies refused to cover chiropractic services, which now are included in many plans.

At one point sublingual, or under the tongue, administration of medicine was not generally accepted by many physicians in the United States, Schwartz said.

That's how Anne receives her treatment. Lundy says she cannot bear to give the 4-year-old multiple injections every day.

Rapp gave allergy extract to children under the tongue, but it was not seen as effective by mainstream allergists. Today, the practice is being studied in the mainstream, Schwartz said.

"I want the public to get the best care possible," Schwartz said. "If the therapy is harmless and even has a potential benefit, I have no problem with it."

But Schwartz, who has never examined Anne or her records, says the condition of multiple chemical sensitivities "defies logic." While there are people who are very allergic, he said "they can't be allergic to everything."
Rapp counters with her latest book, "Our Toxic World -- A Wake Up Call," which maintains chemicals are harming the planet and everyone in it.

"Our bottom line in medicine right now should be to find treatments that are fast, easy inexpensive and safe," Rapp said.

>Most care not covered

Patel is treating Anne and hundreds of others. Most treatments are not covered by insurance.

"At this point, my patients are paying out of pocket," said Patel, who is president of the American Board of Environmental Medicine. "If they were not getting better, do you think they would come back?"

Anne did stop seeing Patel for about five months last year because her parents were having trouble coming up with the money. Anne's problems got worse and they returned in November, Lundy said.

"If our local health insurance companies understand what we are doing, we can prevent a lot of morbidity and future expense for the drugs," Patel said. "It is in the eye of the beholder, no matter how much evidence you have."

As for Anne, her parents have never told her the details of her medical condition. They're waiting for the day she gets better with Patel's treatment, so they won't have to.

e-mail: bobrien@buffnews.com

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