You may remember me blogging about Tricia's Involvement in Clinical Trials...over the years, Tricia has and continues to give of herself and participate in hundreds of clinical trials that help with advancement of CF research.
Now, it's our turn to help make a difference in these CF clinical trials.
Cystic Fibrosis Caucus Co-Chairs Representative Edward Markey (D-MA) and Cliff Stearns (R-FL) will soon introduce a bill to help more people with CF participate in clinical trials.
Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage.
Many researches believe that a cure for CF is literally just a year or two away from us now, and as I have mentioned, there are a few drugs in development right now that promise to double the life of CFers. To help these promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. This important legislation will remove that barrier to allow more people to participate in clinical trials.
As an Advocate for CF, I let Congress know how they can support efforts to find a cure and control for CF by going to This Site and sending an email to my member of Congress, asking him/her to co-sponsor this bill. The more Congress hears from the CF community, the greater the impact we can have on funding for CF research, access to quality, affordable health care, and public awareness for this disease.
Please, take a few minutes to Click This Link, send the email, and join me in becoming a CF Advocate. Once you arrive at the web page, you'll find that the email has already been written for you...you simply need to fill out a bit of personal info so that the email goes to your member of Congress.
If, when you get to the web page, you'd like to add a personal story about CF, please feel free to mention Tricia (or any other CFer you know) and the impact that her story has had on your life.
Thank you very much. I sincerely would appreciate your help with this. And, if you'd like, please, leave a comment here on my blog and let the world know that you've participated in this opportunity to advocate for those with CF. Together, we can make a difference for people with CF!