Story Bank: Susan Weir, Saco

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Susan Weir, 54, Saco

Susan was diagnosed with HIV in 1985, when she was 21 years old. She underwent an exploratory surgery that resulted in her doctor preforming a full hysterectomy, requiring a blood transfusion.

The blood supply had not been tested until five weeks after her surgery.

She was one of the first women in Maine to be diagnosed with HIV.

"Somebody told me, when I was first diagnosed, they didn't know what to do with me," said Susan.

Susan currently falls into the health coverage gap. She makes too much to enroll in MaineCare, but too little to afford health insurance through the Marketplace Exchange.

“Before I went on disability, I earned too much money to have MaineCare," said Susan. "I ended up trying to go directly to drug companies so I could get my medication. It has not been an easy ride."

Although Susan is just dollars over the MaineCare eligibility guidelines, she receives some medical coverage through the Benefit for People Living with HIV/AIDS waiver program and the AIDS Drug Assistance Program (ADAP).

"ADAP has been a big help," said Susan. "If they didn't give me the waiver, I would be, pardon the expression, screwed."

Before the waiver program was created, Susan had been living without health insurance for a year.

I have lived without [health insurance] and it was not fun," said Susan. "Having to go directly to the drug companies to get my needed meds and them wanting your whole life story…I felt bad enough as it was and they made it worse. The waiver was like a godsend."

Susan's prescription costs to date have amounted to $44,000-an overwhelming cost for most. Even though Medicare Part D pays a good portion of that amount, the amount that is left unpaid that MaineCare and the ADAP program cover costs more than half of her yearly income.

"If I was having to pay that, I mean, it's hard living now," said Susan. "I couldn't even imagine having to take that out of my pocket and still afford to get by."

Susan has most of her health care needs met, but if she had MaineCare, she could access necessary services that would help her overall health, like dental care. As Susan would say, "The waiver is not full MaineCare."