| Full Pharmaceutical Disclosure: How Much Information is Enough? |
It is commonly held belief by drug companies and many doctors that patients will be too frightened of medications if they know about all of the side effects. Indeed, many patients do not want to take medications once they see the list of all of the “possible” side effects that can occur.
The really ironic and noteworthy aspect of this editorial is that, as a collective of Avascular Necrosis sufferers, many patients from this community know first hand that the problem is certainly not solved simply via better patient eduction. Between ten and twenty thousand patients develop Avascular Necrosis each year in the United States alone. Approximately 70% of those new cases are the result of corticosteroid usage.[1] Yet, even with numbers that high, many doctors are still completely surprised to learn that Prednisone, one the most commonly prescribed medications in the world, carries a very serious risk of leading to Avascular Necrosis. Even major web sites like this one fail to mention the words Avascular Necrosis or Osteonecrosis as risks.
[1] http://www.niams.nih.gov/Health_Info/Osteonecrosis/default.asp
Asceptic Necrosis
The web site must've taken heed from someone. They added the term "Asceptic Necrosis" to their list of side effects. This is a less commonly used synonym of avascular necrosis.
Active patient participation
In my opinion, the answer to this problem can only be found by raising awareness of Avascular Necrosis in general. Avascular Necrosis does not result in death and thus is not treated with the seriousness as some other diseases. Furthermore, many doctors do not understand the AVN patient experience, such as how extreme and unrelenting the pain can be. Thus, in my opinion, the best approaches to raising awareness of this disease are to:
Ensure that every case of Avascular Necrosis that is suspected to be caused by steroid use be reported as an incident to the FDA, European Medicines Agency, or other applicable agency. If the incident is not reported, then the agencies will never be prompted to re-evaluate the correlation and possible risks of these medications. In my opinion, steroid medications should contain stronger warnings in their drug information sheets.
Collect irrefutable research data. One of the goals of this site is to collect unbiased research data from participating members. Once enough members participate in the data research project over time, then this data can hopefully help answer some of the outstanding questions and shed light on correlations.
Thus, in summary, I see the answer to this problem being activate patient participation in helping to educate regulatory agencies, doctors, and patients. These goals are the very reason this web site exists.