Lyme disease and insurance: Jared´s fight with both 15.4.2004
Four years ago, 14-year-old Lyme disease sufferer Jared Shea of Newlin Townshp was given less than a year to live.
With the help of an expensive antibiotic, those four years have meant a lifetime, but Jared has hit a crossroads. His insurance companies are refusing to pay for the lifesaving medication anymore. And while much ambiguity surrounds the diagnosis and treatment of Lyme disease, without the antibiotic Jared's life is in question.
Jared's problems began before he was born. His pediatrician, Dr. Charles Ray Jones of New Haven, Conn., whose caseload of Lyme disease sufferers is 6,000 people strong, diagnosed Jared with gestational Lyme disease. To make matters worse, Jared was born with developmental delays, but to what they were attributed to are unclear, said his mother Jayne Shea.
It would be 10 years, 11 doctors and an irreversible amount of developmental damage later before Jared was finally identified as having Lyme disease. But by the time Jared's treatment for the disease began, he had suffered a substantial functional degeneration.
Whether or not Lyme disease is at the heart of his neurological deterioration is tough to say, said Jones. However, Jared's response to the expensive antibiotic Rocephin showed hope. But now Cigna, his healthcare provider, refuses to pay for it anymore.
Up until 1994 Jared could walk, run, climb, talk, play, sing, feed himself and most importantly, learn. He was a normal kid with mild developmental delays told by a number of doctors that he would be fine, said Jayne Shea. "He used to run around in the back yard and play with his Super Soaker," she said.
His mother said a chance encounter with a tick in their backyard sent everything down hill.
In the summer of 1995, while Jared was playing outside on his family's property, a one-millimeter sized tick found its way on to Jared's arm. His mother took the necessary precautions and called the doctor, who said to look for a bull's eye type rash or a raised bump. A few weeks passed and nothing appeared, so it was forgotten like a scraped knee.
"A few months after the tick bite Jared's teeth would rattle like he was cold, for about an hour each morning," Jayne Shea said. After a sharp stint of declining ability to function, Jared saw a pediatric neurologist at the Children's Hospital of Pennsylvania in 1996, where he had a magnetic resonance imaging scan that showed an unidentifiable infection was at the cause of his brain damage.
His mother said that the doctor thought it was a minor infection that would be identified when Jared was older and not to worry - that it was harmless.
But from that time on, Jayne Shea said, she saw her son severely deteriorate. He was trapped in his body, which was being attacked from within and without.
Over the course of the next five years, 1995 to 2000, Jared lost the ability to speak or even make sound, walk, feed himself and use his hands. He threw up at every meal, had multiple migraine headaches daily, cried in constant pain from swollen knee joints, could not sit or stand, tolerate sunlight or sounds and touching his skin made him cry. He became incontinent and drooled.
Jayne Shea said a doctor suggested that Jared had cerebral palsy, but she said that didn't make sense because cerebral palsy is not degenerative.
In November of 1999 Jared's mother, a medical microbiologist, began her own research into Jared's condition having been dissatisfied with numerous doctor's diagnoses. She hypothesized that Lyme disease was the cause of his deterioration.
Jared had seen 11 doctors and none of them was able to diagnose Jared correctly. The last doctor, in January of 2000, told his parents that Jared would not see age 11 due to his advanced deterioration.
The Sheas moved Jared from the Children's Hospital of Pennsylvania to DuPont Children's Hospital. "We moved him closer to home in preparing from him to die," said his mother.
While at DuPont the situation remained the same - desperate and bleak. However, a pediatric neurologist listened to Jared's mother's Lyme disease concerns and told them to find the best pediatric Lyme disease specialist possible. That's what they did.
In April of 2000 Jared was taken to pediatric Lyme specialist Jones, who diagnosed Jared with "gestational Lyme disease, complicated by two infections and exacerbated by a tick bite at age 5." Essentially, Jared, and his mother Jayne, found out that he was born with Lyme disease transferred to him from his mother, who is also infected, and it was intensified from the tick bite in 1995.
Jones prescribed the intravenous antibiotic Rocephin, which at that time was paid for by his insurance companies.
Jared's primary healthcare insurance is provided through Cigna. His secondary healthcare is provided through Keystone Mercy - insurance for disabled children offered by the state of Pennsylvania.
Jared made major gains after receiving Rocephin. His growth and weight are now normal for a 14-year-old. The headaches, sensitivity to touch, noise, light and sound disappeared. He is able to laugh again, walk with assistance, feed himself with assistance, no longer vomits at every meal and is no longer incontinent.
Jared communicates as best he can with people around him through a touch-screen talking device called a Dynamyte. The only thing Jared said through his computer-generated voice was, "My name is Jared Shea. I like watching basketball and Nascar. My favorite driver is Jeff Gordon. I have met him twice."
Jared's living quality improved drastically from the Rocephin, but in December of 2002 the insurance companies refused to pay for the antibiotic, which costs $3,500 per month.
Cigna Healthcare was unable to comment on Jared's case because they could not locate him as a member by using his name or his father's name. The preferred method of retrieving information about a member is by using his or her member identification number, said Cigna public relations representative Patty Caballero.
Dr. Stephen Eppes, attending physician of infectious diseases at DuPont Hospital, said insurance companies have a hard time allocating resources to expensive treatments, like Jared's, concerning Lyme disease because they are skeptical of doctors over-diagnosing the disease.
Early in 2003 Jones was able to circumvent the insurance company's refusal by getting Jared enrolled in the Roche Pharmaceuticals Patient Assistance Foundation, free of charge. Though the antibiotic is free, Jared's parents have to pay an additional $3,000 a month for supplies and a visiting nurse to administer the medication intravenously. And the length of time Roche will continue to supply the antibiotic free of charge is undefined.
Jared had a permanent intravenous line, a portocath, installed in his chest on September 2001 to more easily administer the Rocephin.
For almost a year Jared received the medication for free and then he contracted infectious mononucleosis and needed to be taken off of Rocephin for six weeks to prevent severe liver damage. By week four of being off of the medication, Jared had a major relapse of the Lyme disease conditions.
He was trapped again, incontinent and in constant pain. This time there was the added pressure of getting him back on the Rocephin before his body became immune to the antibiotic.
On March 25 Jared was ordered by Jones to restart the Rocephin treatment. Within three days his health was restored to the pre-infectious mononucleosis state. At the same time Roche Pharmaceutical's denied Jones' further requests to keep Jared enrolled in the free medication program due to the Shea's household income.
Jayne Shea said the yearly cost of the medication is more than her family's gross annual income.
As of the printing of this article Jared will be administered his last available dose of Rocephin on April 17, 2004.
Jayne Shea said, "If Jared doesn't remain on the intravenous antibiotic he won't make it...He'll die."
The Shea's have filed suit against their primary healthcare provider, Cigna, for "the right to treat," but by the time the suit is settled they believe it may be too late.