Here is the definition from MedicineNet
http://www.medterms.com/script/main/art.asp?articlekey=11418
Definition of Orphan disease
Orphan disease: A disease which has not been "adopted" by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.
An orphan disease may be:
A rare disease. According to US criteria, an orphan disease is one that affects fewer than 200,000 people. (There are more than 5,000 such rare disorders.)
A common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.
The US Orphan Drug Act of 1983 offered tax incentives on clinical trials and 7 years of marketing exclusivity for drugs developed for conditions that occur only rarely in the US. Since then, more than 200 orphan drugs have been approved by the US Food and Drug Administration (FDA) and are on the market. Similar legislation has been adopted in Japan and Australia.
In the year 2000, the European Union adopted "orphan medicinal products" legislation modeled on the US law, but including tropical diseases and other disorders prevalent only in the developing world. The EU law provides for 10 years of marketing exclusivity, but no tax incentives (because there is no centralized EU taxation system).
While stroke does not fall into these categories I would argue that there is another category, Medical personell have given up on the disease because it is considered to be too difficult to research. Maybe we should get it into the National Institute of Health - Office of Rare Diseases Research.
http://rarediseases.info.nih.gov/AboutUs.aspx
Somebody has to care about the 600,000 survivors each year and the tremendous cost of such disability.
Dean,
ReplyDeleteIf it has to do with if a disease/condition is popular, it won't be an orphan much longer. The baby boomers are at the age where stroke is even more prevalent than before.
Absolutely... the medical profession has given up on us because they don't know what to do to help us other than the bag of tricks they've tried on others before... and sometimes they work, sometimes they don't... and then they get to tell us every stroke is different and every recovery is different, when the truth is that they just don't know how to help. They believe that they try really hard to help us, but we are working so much harder than they can imagine doing. As my husband would say - it's time to chant, not rant.
ReplyDelete6 million US survivors, 63 million worldwide. Your own words.
ReplyDeleteThat says enough! Of course it will take the public, caregivers and survivors to create a loud enough voice to be heard until the medical community and the researchers to finally dole out the cash to do something about this. Orphan disease, huh, what were they thinking. From my perspective, it should be moved right to the front of the line.
-phil
But Barb, being nice is not working, I personally think we need to act like a rabid skunk, hope they don't just shoot us. Ranting seems to be the only way someone will listen. I've already been told that honey catches more flies, but I don't think we want to catch them, just redirect their energy to something useful for survivors.
ReplyDelete