Bill's story

Last updated: 13 October 2022

Bill's story

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Denmark, 2018

When the US Food and Drug Administration announced in May 2017 that a new drug had been approved for the treatment of ALS, my father and I were thrilled. He had been diagnosed with the disease a month earlier but had been turned down for exploratory testing, so this was a godsend. What he didn't realize at the time was that it would be months and months before the drug was actually available in the United States, and even more months before his insurance company would accept paying for his treatments. Anticipating this, I searched online for a foreign provider of the drug. That's when I found The SocialMedwork. 

Within days I had a personal contact person there who took me through all the steps needed to obtain and pay for the drug, which came from Japan. There were slow-downs along the way such as getting the prescription from my father's doctor (persistence is needed) and getting the package through customs (patience is needed), but ultimately it took less than six weeks to get my father the drug that might help him. 

The price we paid happened to be one-third of what his insurance company would have paid in the US, which made it affordable for my father to pay out-of-pocket. Coordinating with infusion nurses was also our responsibility, which added to the workload, since often it is the infusion companies that coordinate all of the work that we did ourselves. The drug did not save my father, ultimately, and he passed away at the end of December. But it 1) gave him hope and the knowledge that we were using the latest techniques to fight this horrible disease, and 2) helped him to avoid the difficulty in breathing and swallowing that most ALS patients experience in their final months. We also applied for the drug via the normal channels in the US, and have still not received an answer from Dad's insurance company. 

I am so appreciative that this organization exists -- and I hope it continues to serve people who need it throughout the world!

Medicine: Radicut (edaravone) 
Date: January 2018