From her mother:
"I am in Rochester, MN with my daughter Rebecca Manner, who needs to be seen at the Mayo Clinic Transplant Center, where she has had three liver transplants, beginning in 1995, for a liver disease called PSC (Primary Sclerosing Cholangitis). We are unable to get insurance coverage until Sep. 1 because Health.gov will not move the date any sooner since we have not experienced a "life event" such as childbirth.
Blue Cross Blue Shield of NE helped me to contact Health.gov to request an escalation of the date, due to Rebecca's life-or-death circumstances, and to the fact that she has no current US insurance because she has been living in Korea for the past 1 1/2 years. The request was denied. Our only option is to use the ER here on self-pay, and if we continue as outpatient/inpatient, also on self-pay.
She has lived in South Korea for 1 1/2 years, and is still a US citizen. She spent the past month in a Korean transplant hospital (her current insurance is effective only in Korea) being treated for infection and inflammation of the area around a stent in one the ducts leading to her liver. She has experienced in that time a rapid decline of liver function, and has been advised to consider a fourth transplant.
This situation prompted Rebecca's dad to fly her back to the US upon her dismissal from the Korean hospital, after they considered the infection to be temporarily manageable by oral antibiotics and added medications for liver function.
Rebecca was able to obtain BCBS insurance as a Nebraska resident, as she will be living with me now, through Health.gov, and because of her change of address was able to qualify for the Special Enrollment Period, which made her effective date of being insured September 1.She arrived in MN on 8/21; on both Air Canada flights she was required to present letters from doctors saying she was physically able to fly, because otherwise the captains would have denied her access to the plane.
We are waiting in a hotel, trying to rest and give symptom relief, but we don't have adequate nausea medications to accomplish relief that allows her to eat and keep medicines down. Obviously, the expenses and my current loss of income are hardships; but that is acceptable to me for the trade-off of being able to be with Rebecca as her caregiver and mom. I am not a nurse, and I don't have access to any medical care help beyond what I can find at Walgreens.
What is unbelievable to me is that the insurance company that wants to cover her expenses is being denied the ability to do its job because someone at Health.gov is afraid of being accountable for making a decision that could prolong or save my daughter's life. Her medical team at the Mayo Clinic has the records of her latest treatment and is ready to treat her, and is exasperated that this roadblock has been put in the way of affordable urgent medical care.
I will keep appealing this Health.gov decision, but if you know of anyone I can contact who would have influence in such a situation, our family and medical team would be indebted to you. Thank you, friends."
"We also had to make the difficult decision of having my husband, Chanshig stay in Korea. Because of the huge financial burden going to Mayo Clinic entailed we were going to need every dime we could get, so for the time being Chanshig is continuing work to make money. He will come to America later on or if my situation changes for the worse. We both desperately miss each other, but we both know we are doing the best thing we can right now."
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