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Wisconsin woman paying nearly $20,000 a year for medication fighting to lower drug prices

She is trying to work with Paul Ryan
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A Muskego, Wisconsin woman is fighting to lower prescription drug prices as she's forced to pay almost $20,000 out of pocket for the drug keeping her alive.

Patients for Affordable Drugs is a group fighting to change the prescription drug pricing system. Jackie Trapp jumped on board when she learned she had five years to live, and the drug needed to keep her alive would cost her her life's savings.

Trapp was diagnosed with Multiple Myeloma, a blood plasma cancer, in 2015.  

"What happens is, I over produce one type of monoclonal antibody leaving me kind of short on the other three that you're supposed to have," Trapp said.

The cancer is terminal but treatable.  After the diagnosis, she underwent induction chemotherapy and then Trapp had a bone marrow transplant.  After that, she was put on a drug called Revlimid.

"The first bill was over $12,000. It was just like another gigantic punch in the gut," Trapp. 

Trapp said she's always been over-insured and planned for worst case scenario situations.  However, nothing prepared her for the cost of the drug she needs to keep her alive.

"$21,197 is what my Revlimid costs every month," Trapp said.

She's paying more than $19,000 out of pocket a year for the drug. "I have a love-hate relationship with it. It keeps me alive, but at the same time, it's kind of sucking the life out of me," Trapp said.

She just got back from meeting with Speaker Paul Ryan's staff in Washington D.C.  She wants the speaker to co-sponsor the CREATES Act (Creating and Restoring Equal Access to Equivalent Samples), a bipartisan bill that would stop brand pharmaceutical companies from blocking generic competitors.

"It forces Celgene, the company in charge of this medication, to share with the generic manufacturers," Trapp said.

Speaker Paul Ryan's office said: "A member of the Congressman’s staff recently met with Ms. Trapp, and her concerns have been relayed to Congressman Ryan.  Although the bill is pending in committee at this time, be assured that the opinions she expressed will be kept in mind as this issue continues to be reviewed by Congress."

Sen. Tammy Baldwin, who supports the CREATES Act, said, “Prescription drugs represent the highest out-of-pocket health care expense for Americans, and families need relief. Bipartisan reforms, including the CREATES ACT, can help bring down the rising costs of prescriptions drugs and we should work together to get the job done on solutions that lower costs.”

"Wouldn't it be great to have a generic equivalent and to have that price pushed down to something a little bit more tolerable," Trapp said.

Those against the bill believe it has nothing to do with creating a revenue source for the government as lawmakers work to create a spending plan.

Scripps station TMJ in Milwaukee reached out to the drug company Celgene for a comment, but we did not get a response.