Toto, we’re not in Walgreens anymore.

buphenyl breaking bad

Buphenyl, or sodium phenylbutyrate, the drug that keeps Jacob alive, is an orphan drug. This means that it is a drug developed for a disorder that affects fewer than 200,000 people in the United States. Normally, pharmaceutical companies would not both to fund research on these drugs, as they would not be profitable because of the small market. Thankfully, the 1983 Orphan Drug Act created incentives for pharmaceutical companies to develop and market these drugs, so that today we have something to help Jacob clean up the excess waste nitrogen in his system.

However, knowing that the drug exists is one thing. Getting your hands on it is quite another. I’m pretty sure I could get a month’s worth of Walter White’s blue meth with less effort. Forget CVS or Walgreens… you need a compounding pharmacy. After spending a few days calling around, I finally found a compounding pharmacy in St. Petersburg who would make the drug for me. Here was my conversation with the pharmacist. We’ll call her Rachel.

Rachel: “Okay, we can make the sodium phenylbutyrate oral suspension for you. But it will be very expensive. Are you sure you want it?”

Me: “My son needs it to live, so, yes, I’m sure. How much is it?”

Rachel: “$258 for a one month supply”

Me: “Okay, do you take AmEx?”

Really, what did she expect me to say? Thanks, but I don’t want to pay that much for the medication that keeps my son from suffering severe brain damage? Of course, Aetna did not cover it, despite several appeals and 24 pages of documentation from his metabolic geneticist. So, I was very happy to learn that Jacob qualified for Children’s Medical Services, a division of Medicaid. I called the pharmacist back to have her process the medication under his new insurance. “I’m sorry,” she said, “but we don’t contract with Medicaid.”

So, today I have spent the better part of the afternoon searching for (1) a compounding pharmacy (2) within a two-hour drive (3) that will make Jacob’s two medications and (4) contracts with Medicaid.

When I find it, I’m pretty sure it will be in between the fountain of eternal youth and a unicorn stable.

6 thoughts on “Toto, we’re not in Walgreens anymore.

  1. I guess I didn’t think about a compounding pharmacy not accepting Medicaid. Grrrr! If only you and Justin could learn to “cook it” I know you would!


  2. If you still do not have Buphenyl, please contact Hyperion directly. They are a wonderful pharemceutical company and they have really good patient advocates that will help you find the best compounding pharmacy. Give them a call at 1-855-UCD-SUPT Monday through Friday 9am-8pm (EST) Not sure where you are geographically, but we got ours from the Weinberg Pharmacy at Johns Hopkins (Baltimore) and we also had/have Medicaid and they also FedExed our monthly order at no charge straight to our home instead of needing to drive 3 hours to pick it up! Good luck!


      • Thank you Dominique! I love photography, I had to give it up over the last few years but I still enjoy shooting now and then! I hope that you call Hyperion, they really are so helpful, they will set it all for you, and even call you monthly to set up refills. It is effortless with Hyperion, we are very fortunate to have them as our drug company. They will NOT let you hanging!

        If you ever have any issues, please dont spend hours on the phone for answers. Id be more than happy to help and not sure if you are on Facebook or not but there are several close (private) UCD support boards full of families and the NUCDF has its own page called REACH UCD (invite only) that allows for private conversations.

        But please, email me anytime!


  3. Pingback: Finding Buphenyl, Part Two: an update | One in Fifty Seven Thousand

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