Kristine's Story

Smyrna, GA

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Kristine was a college athlete, earned a master’s degree, worked her way up to a Senior Manager position in a technology company and was a part of the top talent pool. Now she spends her days on the phone with Pharmacy Benefit Managers (PBM), care providers, case managers, insurance companies, and pharmaceutical companies due to her chronic illnesses, including multiple sclerosis. 

 In 2016, Kristine’s MS specialist prescribed monthly immunoglobulin infusions (IVIG). Intravenous immunoglobulin (IVIG) is injected into a vein over the course of several days with the aim of improving her immune function. At the time, Kristine had exhausted five disease-modifying therapies. With her MS flaring, Kristine was prescribed Ocrevus, which at the time had not been approved by the FDA. The MS Specialist’s Office called the insurance company and was told no prior authorization was needed and to proceed. Kristine received six monthly infusions. Then, she received a letter saying this treatment is not medically necessary for MS, along with a $62,000 bill. Her MS Specialist did two appeals, sending research letters supporting IVIG therapy and yet she was still denied. Kristine’s doctor set up a peer-to-peer discussion. Before he could speak he was told, “No,” and was promptly hung up on. Kristine’s MS Specialist’s Office negotiated the bill, part of which was written off by the provider and part of which was coved by insurance. Kristine was still left paying off an approximately $7,000 bill. 

Recently, because her disease is not controlled, Kristine was placed on monthly IVIG infusions. In November of 2019, Kristine received a letter from the same insurance company stating IVIG is not medically necessary for MS. However, Kristine’s doctor is not using IVIG code for MS; the diagnosis code is for low IGG levels. They submitted Kristine’s lab work, and got another denial, same reason. The person denying Kristine’s medication at the insurance company is a pharmacist, not a doctor. Kristine is stressed because she does not know if she can continue taking IVIG, or if she will receive another bill for over $60,000.

Kristine has also been diagnosed with narcolepsy due to MS. She relies on a medication daily to stay awake. After taking this medication for a couple of years, when Kristine got a new insurance plan due to a divorce, she couldn’t refill her medication. Kristine was told she had to go through a mail-order pharmacy and get a new prior authorization. It took three months of making calls between the mail order pharmacy and her doctor’s office. The mail order pharmacy kept insisting they either didn’t receive the form or the form wasn’t completed correctly by the doctor’s office. Kristine went three months of not having a medically necessary medication to stay awake every day. It is medication that helps make it safe for her to do things like drive.

Kristine advocates for legislators to keep Georgia’s patient first by passing HB918, HB 946, 947 and SB313. MS patients are encountering thousands of dollars in prescription drug bills, even when they have taken all the correct steps to gain financial assistance. PBMs should apply any third-party payment, financial assistance, discount, product voucher, or other reduction in out-of-pocket expenses made by or on behalf of an insured toward an insured's cost share or copay responsibility.