Oh, the irony…I recently shared the article Logistic Toxicity, An Unmeasured Burden Of Healthcare – Forbes, about Logistic Toxicity – the administrative burden of health care. The countless hours spent on the phone with doctor offices, pharmacies and insurance companies.
The burden is real, unrelenting and unpredictable.
Today I’m researching ways to contact the FDA because Sucraid, a critical medication for my daughter, is out of stock due to FDA red tape and their inspection/approval process. Not exactly in my plans for today, or even one of my life goals – trying to affect a large bureaucracy – but you do what you need to when it is critical to your family.
My daughter’s body doesn’t make enough sucrase (a digestive enzyme) for her to process the sucrose in her food and or even her elemental formula. She has been on Sucraid, the only sucrase replacement, for over four years. It is insanely expensive, like other medications needed for rare disease, but the company is great about making it accessible, regardless of insurance and ability to pay for it.
Sucraid is a liquid that is temperature sensitive, shipped on ice and is meticulously measured out for each dosage (58 drops). It doesn’t have a long shelf life either so it truly is a liquid gold.
Recently, the FDA decided it needed to inspect and approve the production process and facility. While going through this process, the original Sucraid is restricted to those willing to sign papers acknowledging the unapproved production site. Never mind that it has been manufactured that way for 10+ years.
Photo courtesy of Shutterstock
Each phone call to renew her prescription felt like a token being put into an arcade game. Was my timing right? Am I feeling lucky?
Thoughts of letting my anger out, yelling and kicking (at) the machine flashed through my head but I knew that it wasn’t going to help.