At the ILD Support Group Meeting last week, I sat near Robin. We were probably the longest members present. She is a large woman who walked in on oxygen, with a mask and the support of a walker with a seat in it.
She is a walking miracle.
Robin has Idiopathic Pulmonary Fibrosis. A very difficult diagnosis. It usually is a 2-3 year life expectancy after diagnosis and there really are no treatment options other than lung transplants. She was able to be accepted into a drug study. She was lucky as she actually got the drug and not the placebo. Pirfenidone. The drug that has been a challenge for the FDA. The drug that the rest of the world has embraced. The drug that is not available in the US. Here are other blogs I wrote about the Pirfenidone journey:
http://livingwellwithabaddiagnosis.blogspot.com/2010/04/ild-meeting.html
http://livingwellwithabaddiagnosis.blogspot.com/2010/05/pirfenidone.html
http://livingwellwithabaddiagnosis.blogspot.com/2011/01/news-about-pirfenidone-in-europe.html
http://livingwellwithabaddiagnosis.blogspot.com/2011/10/editorial-in-new-england-journal-of.html
http://livingwellwithabaddiagnosis.blogspot.com/2012/04/april-ild-support-group-recap-1.html
http://livingwellwithabaddiagnosis.blogspot.com/2012/09/lastest-pulmonary-fibrosis-research-and.html
http://livingwellwithabaddiagnosis.blogspot.com/2012/10/pirfenidone-approved-in-canada.html
This drug is VERY expensive but those who were in the study are given the drug for free for the rest of their lives. I asked Robin how long she has been on it. "Eight years." Clearly, it has extended her life.
Where does it stand in the approval process at this very moment? It still has not been approved by the FDA. The head of research for my hospital is going to give us the latest updates regarding this drug. If you have IPF, hang it there. Hopefully, it will be available soon.
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