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MIAMI (CBSMiami) – A South Florida woman with cancer is not only fighting for her life, she’s fighting with her insurance company over drugs which could save her life.

It seems the company has refused to pay for a specific pill that would treat her rare type of cancer.

Jamie Rusk, mother of five-year old Jack and seven-year old Tyler, has active stage four cancer for the fourth time. Most recently it metastasized to her head,

“If I didn’t have those boys I would not be here talking to you. This fight is grueling and hard. I’ve had so much chemo and radiation. I’ve lost time with them going to the doctor and not being with them,” Rusk told CBS4’s Cynthia Demos.

CLICK HERE To Watch Cynthia Demos’ Report 

After suffering through multiple rounds of radiation and chemotherapy over the past seven years, Rusk said this time around she was given a glimmer of hope.

“About a month ago I got the best news ever in terms of my cancer,” said Rusk.

Her doctor informed her there was a drug that treats her exact mutation which started out as aduodinal cancer; a small bowel tumor – very rare. The drug is called ‘trametinib’.

“It can work for this mutation,” said Dr.Pasqaule Benedetto with University of Miami’s Sylvester Comprehensive Cancer Center.

But Rusk’s joy at learning the drug could help her quickly turned to heart-break.

“I got a call that United(Healthcare) denied me coverage,” said Rusk.

UnitedHealthCare said this would be an off label use of the drug. If the mutation would turn to melanoma she’d be covered but since she doesn’t have melanoma, she’s out of luck and to cover this drug out-of-pocket would be out of the question.

A one month’s supply runs about $10,000. That would be $120,000 a year, potentially for the rest of her life.

“How can this company tell me, this multi-billion dollar company, that they can’t pay for this and i have to pay for this myself,” said Rusk.

Rusk’s husband, Kevin, said fighting the cancer is grueling and now fighting the insurance company at the same time takes it to a whole new level.

At the beginning of the year Rusk co-chaired a major fundraising event for Sylvester – a fashion show with Oscar de la Renta – who recently passed away after his complications with cancer..

That night she apologized to de la Renta for her port being exposed in his beautiful dress that she was wearing.

“And i said ‘I’m so sorry, I have this port’ and he put his hand on his chest and he said ‘Jamie feel mine’,” recalled Rusk.

She and her co-chair Denie Harris raised a million dollars that night. Now her co-chair is by her side once again.

“She’s paying a lot in insurance and when she needs them they’re not there for her,” said an outraged Harris.

Rusk tried a letter writing campaign UnitedHealthcare, but so many people responded it crashed their system.

U.S. Senator Marco Rubio has now stepped in to help in the fight.

“I am blessed with the most incredible friends and family,” said Rusk.

Rusk said when she appealed the insurance company’s ruling, the upheld their previous denial on the grounds that the drug did not meet FDA and NCCN guidelines. Rusk said they told her they are not convinced this is the right drug for her.

Rusk has two more chances to appeal but can not appeal after that. The Rusks are also looking into any clinical trials she can participate in.

She and her family were able to get some money to start trying out the drug her doctor says could help. If it does work they are going to appeal to United again

“Why do I pay insurance every month if they can’t help me,” said Rusk.

Rusk with a major support team by her side said she will do whatever she has to for the sake of her family.

“It’s for them. I’m not going to leave them without a mom, period, period,” said Rusk.

Dr. Benedetto said the major underlying problem is that science is ahead of the insurance companies. Even though doctors can say a specific drug can treat something, if it’s not FDA approved for that specific treatment there’s bound to be a fight.

Rusk’s support team plans on doing another grassroots letter writing campaign to local congress people if necessary.

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