Thoughts on trying to stay healthy
Margaret has her first cold of the school year. She was in front of the TV all day Sunday drinking tea and blowing her nose, watching cartoons. She was well enough to go to school today. Nothing much to worry about.
Except now, I worry. I worry that I’ll get her cold. I’m afraid of getting sick. We are all very focused on me not getting sick.
If I get sick, I have to take more steroids to replace the cortisol I no longer produce.
It’s simple, really. Get sick, get stressed, get any kind of out of sorts — take more steroids. At the same time, I want to stay on the smallest dose I can so I don’t start having the symptoms associated with too much steroids.
Managing Addison’s disease is a balancing act. I have to always be paying attention to how I feel and how I look. Losing weight and becoming tan are hallmarks of the untreated disease. Having thin, papery skin and a chubby, moon face are signs that I’m on too much medication.
Finding the right dose is key. But that “right” dose changes depending on the stress I’m under. It changes all the time.
The steroids used to treat Addison’s haven’t changed in over 50 years … in America. In Europe, Addisonians have access to a brand-new, long-acting steroid called Plenadren. I have read the results of the patient trials and first-hand accounts by those using the new drug. To say it is very promising is an understatement.
So, why can’t American patients with Addison’s disease get Plenadren?
Despite the extensive testing in Europe, the FDA decided the company that holds the U.S. patent, ViroPharma, has to complete more testing on American patients. Currently, there are no trials scheduled in the United States. I know because I contacted ViroPharma.
Why wouldn’t they be actively working to get those trials going, so ViroPharma can sell this new drug in the United States?
Plenadren is an orphan drug for an orphan disease.
An orphan disease is a rare disease that only affects a small percentage of the population. In the U.S., 1 in 100,000 people have Addison’s disease. Mesa County has a population of 147,000. There might be one other person who has this disease in this county (and if you know that person, tell them to contact me. I’d love to compares notes).
An orphan drug is a drug specifically for orphan diseases. Since it’s so rare, creating/testing/marketing new drugs doesn’t make a lot of financial sense. Yes, there are incentives for drug companies to produce these medications.
But the fact remains, that if I suffered depression, erectile dysfunction or COPD, there would be a plethora of drugs for me to try. Why? Because there is money to be made. In 2005, Pfizer’s profits increased 470 percent due to the sale of Viagra.
No one is going to get rich off of sales from a drug for disease that affects 3,200 people in this country.
So, for now, I wash my hands a lot. Sanitize a lot. And hope a lot.