Likely all diseases have evolved in this way. When Research universities & drug companies have breakthroughs, such as Pfizer’s Vyndamax, it’s taken years of research to finally determine the disease and a drug that is effective in addressing it in some way. Amyloidosis diagnoses are only recently becoming more common. Pfizer is now advertising on TV & radio across the country listing symptoms and telling those with them to contact cardiologist. Be your own best advocate if possible. Read all online publications on Amyloidosis, then start making phone calls to get tested and treatment.

@A MyAmyloidosisTeam Member SPOT ON! When diagnosis is early (like my husband’s-56 yrs old) we have fought to finally get Tafadimis (Insurance company wouldn’t approve Vyndamax, no data to support its efficacy was their reasoning). Ridiculously expensive. Only received approval for 3 months worth and the insurance company is requiring a 6 minute walk test and more paperwork before next approval. One month in and we had to call the specialty pharmacy for second month supply to be told it wasn’t approved! Jumping through hoops with this diagnosis is inhumane and exhausting. Sorry venting a bit, thank god we’re fighters and resilient.

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A MyAmylo...

Jerome, I was able to get Social Security Disability at 59 yrs with support from my doctors and a spread sheet I used to track daily symptoms that showed I could not function at any job even a part-time job. My cognitive function and at that time balance and walking ability was very poor. Some people from another support group had to hire an attorney to get their disability. Another system that is very broken. I also got a handicap parking permit with a form signed by my doctor, which helps a lot on those days when you have to venture out and are not feeling well. The Medicare was given to me after being on Disability for 2 years, it's a new law put in place. Medicare was very hard to navigate. I only understood it with trial an error and support from Medicare. This disease is very stressful and hard to manage, I am just grateful we have treatment, but it should not take sooooo much time to get what we need. We may have to take this fight to the politicians who can advocate for us in receiving rapid diagnosis and treatment. Every day without treatment hurst our bodies with the deposits of amyloid. I just feel if a person shows cardiac involvement, they should get the treatment regardless of cost because the alternative is a heart transplant. Totally invasive to the body and long recovery, not to mention the ability to get another heart. Stay the course better days are coming as we get closer to the cure, which may be within the next couple of years❣️

Even if a "large chunk" is covered, it is still unaffordable.

If patient has straight Medicare without supplement (pays 80%), and the patient does not meet criteria for the drug company "patient assist" program... then annual out-of-pocket would still be impossible for most patients:
-Tafadimis ~$50,000/yr
(Retail price ~$250,000/yr)
-Amvuttra ~$100 550/yr (Retail price ~$502,744/yr)

Commercial insurance is just as bad and likely worse.

I am 42, a gene-carrier hATTR with mild neuropathy symptoms. This is a HUGE source of stress for me on top of the diagnosis itself. My mom is on Amvuttra, which THANK GOD, is paid by Medicare/AARP-united. I fear every year at my Mayo Clinic check-up that it is my time to begin one of these therapies and battle with insurance/drug companies.

Yes, it surely is INHUMANE for patients/families to have this added stress of medical cost/drug access.

This organization is a good resource and despite stating "cancer" they are very involved with helping ATTR patients:

https://triagecancer.org/

Sorry to hear about your problems with Vyndamax. My amyloidosis team lead contacted the Pfizer Foundation, submitted some paperwork, and was approved to receive the drug at no cost. Program is renewed each year. When first prescribed my insurance company wanted me to assume responsibility for a $2,600 co-pay each month!