Greetings Journey People,
As you were aware, Blue Shield of California denied the pre-authorization for Bridget's liver transplant. She had an opportunity to appeal this decision with Blue Shield of CA through independent reviewers. The appeal was also denied. At the time, It appeared our only option would be a long drawn out and expensive legal effort. We started reaching out to our community for experience and insight and we got plenty. A special shout out to my old Fenwick classmates, Terry Johnson and Pat Bradley, both long time lawyers, who looked over our situation and paperwork. They were extremely helpful in guiding us to good options.
But truth be told, this was hard, especially for Bridget. After a year of treatment and screening just to be approved by the University of Chicago for the transplant, it was heartbreaking. It was the last thing we were thinking would be a hiccup in the process. The tertiary physicians didn’t understand NETs and were certainly not specialists in the field. We got nuked. The University of Chicago jumped right in writing a rebuttal to the inaccuracies of the panel’s denial summary. After a few days to digest the facts anew, we went back into the fray.
But then fate and your prayers opened another door. Craig’s company had open enrollment for insurance changes that had to be submitted within a week. So we had to act fast and all our heads were spinning. The part that is a Godsent is that Craig's company offers two separate insurance carriers as options for health insurance. This is highly unusual! After many conversations with lawyers, doctors, insurance professionals, insurance carriers and family, they made the decision to switch to Aetna. October 1st will be the official date the new insurance starts. The Aetna policy actually states that a liver transplant is covered for patients with neuroendocrine tumors that have metastasized to the liver. Wow, this is great news! One caveat is that the primary is to be removed. Bridget’s primary tumor is still on the tail of her pancreas. All things considered with NETs this is a good location in terms of removal. Her lawyer didn't feel it would be an issue since UChicago has a plan to remove the primary during the transplant.
So now back to the transplant and live donor piece. The University of Chicago has told us to move forward with finding a donor. They can only take it as far as having interested donors fill out the initial questionnaire. Once insurance approval goes through they can start screening the potential donors. They have also listed Bridget on the national transplant list, but as inactive until the insurance approval goes through. Despite her heavy tumor burden, her liver function is very good. Her MELD score is 6 which puts her at the bottom of the transplant list meaning she would likely sit there until she went into liver failure. This is why UChicago prefers a living donor transplant. In addition to that, it is also more controlled and planned which is ideal for her complex case. We will be releasing a detailed letter from Bridget very soon covering her story and details on how to volunteer. PLEASE, old people pass on to your tech savvy kids for reposting to social media and forward on to everyone on your email list. Young people, you have the tools to save lives. I understand how busy your lives can be, but please I ask you to pause and give this situation the effort and urgency it needs. Please post ASAP and be creative to get it out to as many people as possible when the time comes. Our hope is for a minimum of 100K views. It takes a lot of living donor candidates just to find one. Only 20% of candidates screened will make the cut.
Bridget's most recent PET scan showed two lesions in her liver that grew since February. The rest of the lesions are not showing as metabolically active. The liver tumor board would like Bridget to do a bridge treatment while she is waiting for insurance approval and to find a living donor (time is of the essence!). She was very disheartened by this as she has been feeling good for the first time in a year and a half and treatments can make you feel like crap. Her oncologist suggested two drug options. Bridget pushed back and asked if she could have the two lesions that grew ablated. After further discussions with the liver tumor board, transplant team, oncologists and interventional radiologists, they came back to her and said it is doable. She is still awaiting the call from radiology to schedule the procedure.
Keep a look out for details on the living donor post in the next week or two.
Love and Thanks for you all!
Ron
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