Once diagnosed, patients life expectancy is 2-5 years. Some live longer.
A medication called riluzole may extend life by about two to three months, which I cannot take since I had an allergic reaction. There is also another drug on the market, the first one in 22 years, called Radicava. Radicava is an intravenous (IV) medication.
IV infusion(60 mg)
Two 30 mg bags
For the first cycle, Radicava is infused for 14 days, followed by a 14-day drug-free period. Subsequent cycles are infused for 10 days within a 14-day period, followed by a 14-day drug-free period. The drug may only help slow progression by 33%.
The drug, not including home health and port placement, is $146,000 per year and they have not finalized with insurance companies yet what they would be willing to pay.
In addition to medications, there are disability gadgets, wheelchair, BIPAP breathing machine and various other home care expenses.
This illness will definitely take a toll on my families finances. The donation you give today will not only be appreciated, but give my family a piece of mind with the stress of how we can afford to live with this disease.
From the bottom of my heart, thank you.
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