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HealthWatch: Bay Area Lyme Disease Patient Fights Insurer

SAN FRANCISCO (CBS 5) -- Health insurance has become a luxury many Americans are struggling to afford these days. So imagine the frustration when you do have insurance but you still can't get your plan to pay for drugs that cost thousands of dollars a month.

It's a ritual Mona Motwani goes through every day: intravenous infusions of antibiotics, to fight advanced stage Lyme disease. "I was basically lying under the desk at work because I couldn't even stand up," she said.

The bacteria affects the nervous system, and makes her so exhausted, she had to quit her job as a public interest lawyer. "I cried for days. I couldn't accept that I wasn't able to work," Motwani said.

Lyme disease comes from the bite of a tick, found in wooded areas where there are many deer such as in Marin County. While most cases are treated with just a month of antibiotics, some patients suffer much longer.

The disease can be devastating, both physically and financially. "The insurance has been a nightmare," she said. Even though Motwani has insurance, she can't get covered for her drugs. She takes a lot of them: 70 pills a day. And they're expensive. "Especially one very important one, which is $1,300 a month," she said.

The IV drugs are even pricier: One bag can cost as much as $200.

"And that is one bag, twice a day," Motwani said.

But she said each time she submits a claim, Blue Shield comes back with some reason why they can't cover it. "I have to go back to what was denied, check the explanation of benefits, call back the insurance, get another letter from the doctor. It's just too much red tape," Motwani said.

Motwani is not alone. "There is an insurance problem," said Dr. Christine Green, Mona's specialist. Green said many advanced stage Lyme disease patients go through the same ordeal.

It has to do with the standard of care for Lyme set by the Infectious Disease Society of America and upheld by the Centers for Disease Control.

"If you look at the IDSA standard of care, that patient needs a month of antibiotics," Green said.

For advanced stage Lyme disease, it's just not enough. "The insurance companies as near as I can see have chosen the least expensive standard of care," Green said.

It's a very controversial issue and many doctors disagree, including UCSF's Dr. Richard Jacobs, an infectious disease specialist.

"The recommendation is that even after you have an episode of (Lyme disease), if you have been treated appropriately for 6 weeks with intravenous antibiotics, that further therapy for these non-specific symptoms is not indicated any longer," he said.

Jacobs said he is not surprised that this prolonged therapy is often, or generally not covered by insurance. "No, not at all. I don't think that long-term therapy is indicated and it can lead to problems," he said.

But Cindy Ehnes who heads up the state's health insurance watchdog agency said Mona has the right to appeal.

"A patient who has been denied a treatment recommendation based on the fact that it's not an effective medication has the right to receive an independent medical review," Ehnes said.

So far, her agency has determined that Blue Shield should pay. "At some point it becomes the responsibility of the plan to provide that critical benefit," Ehnes said.

It gives Motwani new hope that she can afford her treatment and get back to her calling. "I don't give up. If I am exhausted I will still keep pushing, because I don't like to see people walk over me," she said.

Blue Shield declined CBS 5's request for an on camera interview, but said they are still investigating Mona's case.

However, last week for the first time Motwani said her insurer picked up the $1,200 tab for her IV infusion drugs.

For more information on this subject, please see:

Mona's blog:

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