Update to financial impacts of disease treatments...

Judy, the coverage news is great! I so hope your husband improves with treatment!!

A lot has happened since I last posted. My husband's. Neurologist started the wheels in motion for him to begin Onpattro I fusions. Working with a case worker from the drug manufacturer and the infusion center where he will receive treatments,, we found ou that 80% of the treatment costs will becovered by Medicare. Our supplemental insurance will cover the remaining 20%. There was a slight delay in the approval process. Those of you living outside of the U.S. most likely will shake your heads in disbelief, but in the United States, our health insurance payment system is totally dependent upon codes that insurance companies assign to various procedures and treatments. Hospitals and clinics may also use codes...but they are usually internal to their operations and differ from those of the insurance companies. And then there is the added complication that hospitals, clinics, and treatment centers may have separate agreements with insurance companies that place them in selective discount tiers that allow them to adjust payment fees for differing institutions. When a doctor writes an order for a treatment, they must be sure to specify the appropriate billing code used by whatever insurance company covers the patient. Many people are employed to keep track of all of this. In our case, the neurologist correctly identified the appropriate billing code on the initial order. We were told, however, that a subsequent note that was sent to the infusion center contained a different code. With all the hands that touch the communications, it took a while to identify who had seen the first code, who had seen the conflicting codes, who needed to contact the neurologist to make the correction, and then find out where in the process the first information needed to be canceled so the correct code was used. (Yes, we definitely need to overhaul our healthcare system.)
Husband will receive his first Onpattro infusion today.
We also were referred to a cardiologist to determine if husband's heart is involved. We met with cardiologist last week. We found that in Colorado where we live, there are not many doctors with experience diagnosing or treating amyloidosis. This cardiologist, referred by our primary care physician, has some training both from his residency and a short internship with an amyloidosis specialist. Because husband already had the genetic confirmation of the Val30Met gene mutation, the cardiologist limited his initial visit to an EKG and vitals. He advised the test that would reveal cardiac amyloid deposition is a PYP scan. A radioactive injection that when exposed to another scan, causes amyloid deposits to glow, thus confirming presence in the heart. This test is scheduled for early January.

mMeanwhile, my husband's symptoms have worsened. His weakness and fatigue keep him chair-bound and napping throughout the day. If he does something like taking out the trash, his breathing is labored and he must rest afterward..When he eats, he feels full very quickly. He is eating barely half of what he was two months ago And continues to lose weight. In the past two days, he has noticed considerable loss of strength in his left leg from his knee to his foot. He fell the day before yesterday after trying to bend forward to pick up something. He was not injured. But he did reveal that this was not the first time he has fallen. (News to me.) The falls, the weakness, the reduction in eating, all tell me that disease is progressing rapidly. The infusion can't come soon enough.

I will share how the infusion goes and how he tolerates the treatment. Keep us in your thoughts.

Judy, I missed your previous messages and plead complete ignorance of this disease (as a retired RN kind of embarrassing!) I googled and got information on it that others may like to know if they also are not familiar. Thank you for including others on your journey. Your story may help others, for sure. Wishing you so much luck!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7041433/

Ditto!

JudyCares, that is SUCH wonderful news!!

Thanks for the update and here's hoping that this course of treatment is successful!