Finding Buphenyl, Part Two: an update

buphenyl breaking bad

If you read the comments on my earlier post regarding my quest for a reliable and affordable source of Jacob’s lifesaving ammonia scavenger drug, you saw that Mindy, mom of the lovely boys Connor and Corrigan, gave me some leads to follow. So, an update seems to be in order.

I did find a compounding pharmacy that contracts with Medicaid: Bay Life Pharmacy in Clearwater. However, Medicaid is currently refusing to cover Jacob’s prescription. We are appealing that decision. In the meantime, the wonderful people at Bay Life Pharmacy worked with me to get the price down, which is a start.

I also followed Mindy’s lead and called the UCD support line at Hyperion Therapeutics. They were able to direct me to the National Organization for Rare Disorders, which offers financial assistance to families in situations like ours. I sent in the application and am hoping to hear back soon.

Today, I had the great privilege of speaking with Cindy LeMons, Executive Director of the National Urea Cycle Disorders Foundation. I learned from her that there are other ammonia scavenger drugs either available or in development that Jacob may have access to in the future. I was already somewhat familiar with Ravicti, but there are apparently other drugs in development as well, one of which I believe to be currently available in Canada. If you are so inclined, please consider supporting the NUCDF so that by the time Jacob is Corrigan’s age, children born with Citrullinemia and other UCDs will have more and better options for medications to manage their condition.

Stay tuned for further updates as my quest progresses.

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