The last six years have been a rollercoaster ride for Theresa Gould. Ever since she contracted Lyme Disease in 1995, her life has been a constant struggle between battling a pesky, hard-to-diagnose illness and trying to get her health care provider to pay for her treatment.
She says she wakes up tired every morning with pain in her joints and is too fatigued to work a 40 hour week, but she hopes that a new treatment will help her get back to what she loves doing – helping people.
The wife of Hudson School teacher Jeff Gould, who used to work as a private counselor for children, said she believes that with the moral and financial support of the community and the benefits of a new intravenous antibiotic treatment, she would be able to live the life wants.
But it looks like her healthcare provider won’t pay for the 42-day treatment, even after she made several appeals and after she underwent a painful spinal tap to help prove the diagnosis.
Healthcare problems
Theresa said that she probably got Lyme disease in 1995 from a tick bite. The disease can cause fatigue, headache, neck stiffness, jaw discomfort, pain or stiffness in muscle joints, slight fever, and swollen glands. Theresa went through a long period of not knowing what she had.
Gould was put on oral antibiotics over the course of several years, which would drive the illness into remission – but the on each occasion, it would return.
In May of 2000, her physician prescribed IV antibiotic therapy, which is more aggressive that the oral antibiotics. She would be attached to an intravenous machine for 42 days.
This is when their trouble with her healthcare providers began.
The Goulds’ plan, Oxford Health Plan, refused to pay for this significantly more expensive treatment even thought it was prescribed by a doctor within its own system. In the rejection of their original request, Oxford said in a letter dated June 30, 2000, “Oxford Health Plans Physicians continues to uphold the decision to deny coverage because there is no objective evidence to support the diagnosis of Lyme Disease. The pattern of illness, serology and clinical illness is not typical. Therefore Oxford Health plans medical criteria has not been met.” “Nothing about Lyme is typical,” recalled Jeff Gould about his first thoughts after hearing about the rejection. “It masks itself as so many other things, there is always an uncertainty about it, it’s in every way an atypical illness. That’s why we needed the aggressive treatment.”
They then went through the appeal process, which included three appeals to Oxford and an final appeal to the State of New Jersey. In all, the process took six months.
In their final appeal hearing on August 29, 2000, Oxford told the Goulds that they would respond in 7-10 days. Attending and witnessing that statement were Jeff Gould and their attorney.
In the middle of October, they say, they received a letter dated Sept. 14 from Oxford that said their final appeal had been declined.
In the letter of rejection states that, “The committee has determined that the initial denial was appropriate as there is no objective evidence to support the diagnosis of Lyme disease.”
The Gould were upset with this ruling on two levels. First they were upset that the response was not timely. Even though the letter was dated September, neither the Goulds nor their attorney received it till October.
On Oct. 3, the Gould received a call from Oxford on their answering machine. “Jennifer Donnelley [the Goulds case worker] is aware of the pending decision. Apparently there is a delay,” that said the representative from Oxford. “She will do her best to expedite a decision.”
Jeff Gould argued that the letter that was dated Sept. 14 was actually written at some date past Oct. 3. “They were trying to pull a fast one,” said Jeff Gould. “Why would they say there is still a decision pending if they already made a decision on Sept. 14?”
The Goulds were also upset at their reject because they felt like they had given ample proof of her diagnosis. So to end all doubt that Lyme was Theresa Gould’s illness, she under went a spinal tap. The painful procedure disproved that the diseases could have been any on the other hypothesized diseases that Oxford gave as reasons for rejection.
But when the Goulds took the results of the spinal tap to the state, they were told that with the inclusion of new data that they would have to start the appeal process all over again. Several calls were made to Oxford and their attorneys, but according to the Goulds, these multiple calls were never returned.
“At that point we decided that were are just going to have to pay for this ourselves,” said Jeff Gould about their frustrations.
“I didn’t want to write all these letters,” said Theresa Gould. “I don’t want to sound like I’m complaining, but the fact was that I just didn’t feel good. They were giving us the big run around, deferral and denial, we were tired of all of it.”
Community help
The Goulds had already spent $4,500 on legal fees and were facing another $170 a day for 42 days for the IV treatment, or a little over $7,000. With Theresa only working part time and Jeff being a teacher at a private school, that kind of money was going to be hard to come by. So the Hudson School stepped in as started fund raising for the couple.
On Feb. 24 they held a benefit concert with the award winning Celtic Folk-rock band Lenahan. While they were successful in raising several thousand dollars, they are still a little short of the total cost of the treatment.
“The Hudson School came together for us,” said Gould. “It has been so much more than just financial. There were so many times when we felt like there was no help or support. It was really taking a toll on me mentally and physically, but the people in the community have been so supportive.”
Anyone interesting in making a donation can mail one to the Hudson School at 506 Park Ave., Hoboken NJ 07030. For information on Lyme Disease visit www.cdc.gov or www.noah-health.org . For information on patient’s rights visit The Patient Advocacy Coalition at www.patientadvocacy.com.