It’s been quite a few weeks!
I know I haven’t blogged much lately, but boy do I have catching up to do. I started out the most recent round of traveling by heading to New Orleans for the American Thoracic Society or ATS. This time I was able to meet Karen Tillman, who came along to help man the booth, in the Atlanta airport. We were able to be on the same connecting flight to New Orleans, which turned out to be a real blessing.
I had been worried about traveling. I’d had a bad two weeks of GI problems, the kind that require one to take up residence in the throne room, if you catch my meaning. The day before I was to leave, all of the cramps and problems seemed to go away and I thought I was in the clear. I got up the next morning and everything seemed to be fine until I got to the airport. The hour before I got on the plane I was in the bathroom three times! Once in the air, I had to violate the seatbelt sign for an emergency run. Thankfully the flight attendants didn’t give me much grief so I didn’t have to go into elaborate explanations about the consequences if they didn’t grant me access to the bathroom.
Once on the ground in Atlanta with Karen, there were a few more runs. It’s so much easier to go to the bathroom when traveling when someone else can watch the luggage! I was so glad to have Karen with me too as I just felt so weak and out of it.
We arrived at our hotel and wasted no time hitting the ground. Donna and Ashley were already at a networking function and we were to join them. We set out in the sticky humidity of New Orleans to find the hotel where the function was being held and eventually made our way there.
While this was a busy year for us at ATS, thankfully it wasn’t as bad as some other years have been. Donna is no longer the President of the Public Advisory Roundtable so she’s able to be more involved with the rest of us. The week was a blur of attending lunch after lunch, dinner after dinner, mixing and mingling and telling the HPS story at every possible opportunity.
We also, of course, manned the booth on the show floor.
After about a day my tummy issues improved, but were replaced by a sinus infection. My hearing never did return to normal after my ears had been popping on the plane. My throat was sore and I felt chilled. After just one day in the booth, I had lost my voice and was getting very dehydrated.
It was so frustrating as these meetings are so important and Donna needs me to be on my game. I felt horrible though. The night of the President’s Dinner, a major mixer for networking that was to be held at an art museum, I had to cave in and stay home to try to get some sleep and recover.
The last day of ATS all four of us attended a session held by the FDA. Representatives from the FDA explained why they had decided to require another clinical trial of Pirfenidone before it could be considered for approval.
To be honest, it was a very depressing session, but it was also very useful. It was useful to hear the doctors debating the issues. It seems as though the FDA is holding potential drugs for pulmonary fibrosis to a very high standard. As one doc put it, if steroids that are used every day had to meet these standards, they would have never been approved.
We learned that there is a section in FDA regulations allowing them to be more forgiving when considering drugs for diseases like AIDS or cancer, provided they aren’t harmful, because of the deadly nature of those disorders. The trouble is pulmonary fibrosis is just as deadly and there are NO treatments. We came to the conclusion that we’re going to have to expend some grass roots energy to get the FDA to see pulmonary fibrosis in the same way they see deadly cancers and AIDS. When we get home, Donna and I will be speaking with some other patient support groups and formulating a plan. Stay tuned.
I know I haven’t blogged much lately, but boy do I have catching up to do. I started out the most recent round of traveling by heading to New Orleans for the American Thoracic Society or ATS. This time I was able to meet Karen Tillman, who came along to help man the booth, in the Atlanta airport. We were able to be on the same connecting flight to New Orleans, which turned out to be a real blessing.
I had been worried about traveling. I’d had a bad two weeks of GI problems, the kind that require one to take up residence in the throne room, if you catch my meaning. The day before I was to leave, all of the cramps and problems seemed to go away and I thought I was in the clear. I got up the next morning and everything seemed to be fine until I got to the airport. The hour before I got on the plane I was in the bathroom three times! Once in the air, I had to violate the seatbelt sign for an emergency run. Thankfully the flight attendants didn’t give me much grief so I didn’t have to go into elaborate explanations about the consequences if they didn’t grant me access to the bathroom.
Once on the ground in Atlanta with Karen, there were a few more runs. It’s so much easier to go to the bathroom when traveling when someone else can watch the luggage! I was so glad to have Karen with me too as I just felt so weak and out of it.
We arrived at our hotel and wasted no time hitting the ground. Donna and Ashley were already at a networking function and we were to join them. We set out in the sticky humidity of New Orleans to find the hotel where the function was being held and eventually made our way there.
While this was a busy year for us at ATS, thankfully it wasn’t as bad as some other years have been. Donna is no longer the President of the Public Advisory Roundtable so she’s able to be more involved with the rest of us. The week was a blur of attending lunch after lunch, dinner after dinner, mixing and mingling and telling the HPS story at every possible opportunity.
We also, of course, manned the booth on the show floor.
After about a day my tummy issues improved, but were replaced by a sinus infection. My hearing never did return to normal after my ears had been popping on the plane. My throat was sore and I felt chilled. After just one day in the booth, I had lost my voice and was getting very dehydrated.
It was so frustrating as these meetings are so important and Donna needs me to be on my game. I felt horrible though. The night of the President’s Dinner, a major mixer for networking that was to be held at an art museum, I had to cave in and stay home to try to get some sleep and recover.
The last day of ATS all four of us attended a session held by the FDA. Representatives from the FDA explained why they had decided to require another clinical trial of Pirfenidone before it could be considered for approval.
To be honest, it was a very depressing session, but it was also very useful. It was useful to hear the doctors debating the issues. It seems as though the FDA is holding potential drugs for pulmonary fibrosis to a very high standard. As one doc put it, if steroids that are used every day had to meet these standards, they would have never been approved.
We learned that there is a section in FDA regulations allowing them to be more forgiving when considering drugs for diseases like AIDS or cancer, provided they aren’t harmful, because of the deadly nature of those disorders. The trouble is pulmonary fibrosis is just as deadly and there are NO treatments. We came to the conclusion that we’re going to have to expend some grass roots energy to get the FDA to see pulmonary fibrosis in the same way they see deadly cancers and AIDS. When we get home, Donna and I will be speaking with some other patient support groups and formulating a plan. Stay tuned.
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