Saturday, July 28, 2007
Don't Forget the Orphans
It's a term that appears frequently in medical journals or news articles about cystic fibrosis. You may have seen this word and not known what it is, or even cared.
An orphan drug is one that generally only gets research grants from the government. Why? Because there is no financial incentive for larger pharmaceutical companies to put the time and effort into research, because the drug will only be used to treat a rare condition. According to the FDA, an orphan drug is classified as such because it will only be beneficial to a population of fewer than 200,000 Americans.
Cystic fibrosis is just such a condition. Cystic fibrosis affects only 1 in 3,500 people in the United States. In the present decade there has been a great deal of advancement in the treatment options for cystic fibrosis. Sadly, it is still a killer disease. CF kills children, teenagers and adults. The median survival rate of people with cystic fibrosis has been a scant 36 years. Although the disease is treatable, there are limits to the medications that are available.
In order for the treatment options to become available to me, and others with this life-threatening illness, we need to rely on the Federally funded financial incentives offered to drug companies. One hour of research costs approximately $12,000. Imagine how huge the bill would be for the entire length of time it takes to put a new drug for CF on the market.
You can help foot the bill for life-saving research. By donating to the Cystic Fibrosis Foundation, you are part of the team that enables patients with cystic fibrosis to live and breathe tomorrow. You can make a difference. I'm doing what I can to raise $5,000 before September 15, 2007. Please donate to the Cystic Fibrosis Foundation on my behalf. Your gift is tax deductible and $0.90 of every dollar goes directly to research.
Here is a link to my donation page. Thank you for your help and support.
Thank you for your continued information that you give. I find that members of my family are coming here and reading your blog.
Through letters to friends, I was able to raise about 1500 for the CFF this year. People have been very kind.
I'm tagging you. Check my blog for the rules. Thanks for all your fundraising efforts.