This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…
health insurance
Growing up, I was mostly a healthy, overweight kid who seldom got sick. As an adult, I’ve had a career in the office equipment industry for over 30 years and have always had health insurance through my employers. No matter what type of plan was offered, I’d always pick the…
A few weeks ago, I discussed how we were eyeing a medication switch to Nexviazyme (avalglucosidase alfa) for my 4-year-old son, Cayden. But switching to this new drug may not be as easy as his doctors and I were hoping. Cayden has been receiving Lumizyme (alglucosidase alfa) infusions…
We are no strangers to our insurance company. While it’s been great in most aspects, we still have to battle it from time to time. Unfortunately, this happens quite often with rare disease patients. Due to his infantile-onset Pompe disease, my 3-year-old son, Cayden, has to…
The National Organization for Rare Disorders (NORD) is applauding the Biden administration for announcing a rule to protect consumers from surprise medical billing, in a joint statement with 26 other U.S. patient organizations. The interim final rule will implement patient protections required by the No Surprises Act. Surprise…