12/11/2024
February, 25th of 2021, at 37 years old I was diagnosed with stage 4 colon cancer that had metastasized to my liver. Doctors told me that I had a 10 cm mass in my colon and often used the term innumerable masses when talking about the amount of disease in my liver. I started systemic chemotherapy in March of ‘21 and did so every other week until September of ‘21. At this point my oncologist here in Fairbanks told me that I was doing so well that I had exceeded everything they could offer here locally. She sent a referral down to a liver surgeon in Oregon who, unfortunately told me that the level of disease was too severe for a resection surgery, but that he felt I was a good candidate for a specialized targeted therapy. In January of ‘22 I had a Hepatic Artery Infusion pump implanted for liver targeted treatment. There are only a handful of hospitals in the country that offer this treatment. Therefore, it required me to travel from my home in North Pole Alaska to Oregon Health and Science University (OHSU) in Portland Oregon every 2 weeks to have the pump refilled. I have also maintained doing systemic chemotherapy every other week on top of the HAI chemo.
Since that time, I have had Radiation treatment on my colon and multiple surgeries to include a bowl resection where they removed my colon and part of my large intestine. As well as removing the HAI pump when that treatment was no longer effective. The great part of all these surgeries is I am now primary tumor free, and all I am left with are the tumors in my liver. While this is great news, it does still mean that I have metastatic colon cancer as the tumors in my liver are the result of my colon cancer.
My doctors tell me that at this point my only option for curative treatment is to get a liver transplant. Which I do qualify for because my primary tumor has been removed for more than two years. The problem with this is that again there are only a few hospitals in the country that will do a liver transplant for someone with my diagnoses.
My team at OHSU sent out referrals to different hospitals, and we finally heard back from Barnes-Jewish Hospital in St. Louis, MO. My wife and I flew down for the week and spent 18 hours over the course of two days doing test after test, and meeting after meeting, evaluating my health and eligibility to become a patient for this operation. Our insurance, Premera Blue Cross Blue Shield of Alaska, covered these tests and meetings. BJU hospital determined that I was a perfect candidate for this surgery and accepted me as a patient, with a UNOS exception for the transplant as well. All we needed was to submit preapproval for the insurance and we could get moving. After 30 days the insurance denied the claim, saying that there are two hospitals in network with them that do liver transplants. This left us confused because we were told those hospitals do not have the program in place to do transplants for someone with my diagnosis, so we appealed. 45 days later we got a letter in the mail stating that they were upholding their decision to deny the claim stating, the lack of need to go to an out of network hospital for a transplant when there are two in network options, and lack of pre-approval for the transplant. Again, confused, because of the information we have on those hospitals not being able to do what we need, and that this was the pre-approval being sought. As of right now, Premera considers the claim closed on their end and our only option is to seek assistance from the Alaska Division of Insurance, for them so petition an external review of the claim, which Premera still has to approve.
During all of this and still to this day I have continued to do systemic chemotherapy totaling somewhere over 65 times.
The slow steady progress that chemo has consistently provided is no longer there. At this point we are seeing tumor growth even with chemo, and the blood marker they monitor that indicates growth is climbing. Unfortunately, this marker is also used to determine eligibility of the transplant and has a small window of acceptable, my number is now edging closer to that cut off. Not to mention the havoc chemo is putting the rest of my body though. My bloodwork shows that parts of my body are shutting down, I now have a heart condition, I suffer from a lack of energy, and I have random bouts of vertigo as well as sudden onsets of almost crippling bone pain. My blood does not clot like it should so I have to be extremely careful because even a minor cut will bleed excessively. I suffer from neuropathy and painful cold sensitivity (not a good thing in North Pole, Alaska). All of which has caused me to not be able to work as much, making it difficult to provide for my wife and children.
The fact of the matter is, I need a new liver to stand a chance to win my fight with cancer. Resection is not an option, never has been. Other treatment options are a band aid on a geyser of a problem, and not without severe side effects and consequences, and all my different doctors, oncologists, and other team members all agree that chemo is not the answer anymore. The average cost of a liver transplant, all said and done is $875,000 without insurance, along with the added expenses of having to live in a different state than my family for several months, so this isn’t something that we could do without Premera ’s help.
If you’re still reading this wow and thank you. I am generally a quiet, keep to myself kind of person, but I don’t think it’s right that after all this Premera Blue cross should be allowed to decide my fate. My amazing wife has spent hundreds of hours on the phone with Premera throughout this whole process with other claims and billing errors, and things are still not correct in that department either. It has been a constant fight to get them to cover things and uphold their end of the policy they sold me. We are both mentally and physically exhausted from this whole ordeal. Having and dealing with cancer is bad enough in itself without having to fight with Premera for the huge financial aspect of it all. However, we are not done yet. We are compiling information to go to the Alaska board of insurance and possibly an attorney to open a third-party review. I will not let Premera or cancer take me out. We will win.
If you feel the desire to help financially, there is a GoFundMe
