When a Drug Shortage Happens to You....

Remember in the early days of the pandemic when people would hoard toilet paper and there would be shortages on it? A shortage on toilet paper was an issue, but there are a lot of toilet paper manufacturers and media attention was on it and within a very short time the issue was resolved. What if the shortage was concerning medication for a rare disease? Would the attention be the same? Would there be other manufacturers to step up and help? And what happens if there are not answers to the shortage quickly?

For those in the Addison's Disease/ adrenal insufficiency community this has happened more than once and is happening again....

Remember when I told the story of my son's diagnosis I explained that it affects multiple hormones. Fludrocortisone is the medication that is used to replace aldosterone. There was a time a couple of years after his diagnosis that there was a shortage on this medication. For us, we had adjusted his dosing enough that we had extra and we were not overly worried, as long as the shortage was relatively short. For others this shortage was life-threatening. There are only a couple of manufacturers and although I do not remember the reason that production was low at that time - there was not much of an incentive to alleviate it when so few are affected by it. Also, remember when I said in the diagnosis story that Addison's it more common in dogs. Well as I was trying to find fludrocortisone for some who could not find it, I found it in pet pharmacies. It said that it was a human medication fit for animal consumption. While you all know how I feel about my furry friends, I love my son more and this bothered me. Everyone was doing all they could to help others through this scary situation, some were supplementing with as much salt as they could trying to replicate the effects of the medicine, if was a tense time for all of us. But we made it through.

Then there was a time during the pandemic that it was thought the very same steroids that were keeping people with adrenal insufficiency alive were thought to possibly help treat with Covid (I am not open to Covid conversations). Again, we were facing a run on our medication. This time was different. There were manufacturers rushing to make these steroids that would help if it meant lessening the effects of the pandemic. This time our shortage was relatively short and affected very few people. The fear of it was far more than the reality that time.

And now here we are in 2023, remember the injection that is life-saving in an emergency? The one that I complain about being 14 steps to administer, yes that one. Well there is one manufacturer for that. Yes, we in the adrenal insufficiency world depend on one pharmaceutical company to make the one drug that is most effective for saving the lives of us, those we love. I should also add that some people use this medication in place of oral medication daily either injecting it or with the use of an insulin pump administering it. The one manufacturer right now is running one less line of our solu-cortef vials. They have a plan in place that those who need it will get what they typically get on a regular basis, so long as others do not hoard it.

We have what we normally have in our house for our son and I am not worried about us in the moment. I am worried about people in hospitals that are being given other steroids that do not have all the same properties as solu-cortef and there for are suffering more and at higher risk of complications. I am worried about people who depend on this for their daily steroids because they respond better to solu-cortef or their bodies do not break down oral medications as effectively. Pfizer has put out statements to our organizations to share with our communities and why not to be afraid. If you need a copy, please contact me.

For those not in the rare community, this is why I continue to bring awareness. This is why I educate. These shortages on things like toilet paper seem critical to so many, but are short lived as the response is immediate and large. When a shortage is in the rare disease world it takes is making a lot of noise, it takes a lot of coordination and planning in case we cannot make change happen. When you see us ask to make others aware of an issue this is why, our lives or the lives of those we love may depend on it.