Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to be a panelist and share their real-world experiences with the disease – and Laura (LaurCT) was selected to attend! So, along with Sally, Laura headed to Silver Springs, Maryland and spoke to the FDA about what life if really like living with IPF. Check out how it all went below.
Laura was officially diagnosed with idiopathic pulmonary fibrosis (IPF) in May 2013, but was living with symptoms for years before that. She’s really an inspirational member of the community and always has her 3-stars (which means Laura is a super health data donor!).
Why did you want to be part of the FDA public meeting?
It was simple for me, I wanted to be part of the solution. When I was diagnosed with IPF I was quite the mess as many of us are. I’m a fighter. I just can’t sit back and do nothing. So, once I got over the total devastation I wanted to fight for me, for others and especially for my children. We all have our strengths and fundraising is not one of mine. I can stand up and tell how hard it is to live with this disease, not just medically, but the changes and decisions we all have to make that seem small to some but are huge to people who are living with this disease. It was important for me to be able to give back in some way to those that helped me through all this.
What did it mean to be accepted?
When I filled out the summary I felt no way will I be accepted so I’m not going to worry about it. When I received that email from the FDA that said, “We would like to extend an invitation to you to present your comments during the panel discussion on Topic 1,” I had to read it twice. My next reaction was of total humility, to represent so many patients on a panel and to tell people what we all face was such an honor. My next reaction was to share the good news with Sarah on PatientsLikeMe because I knew she’d be just as excited for me.
What was it like being there as a patient representative speaking at the FDA event? Did you feel like your voice was heard?
It was amazing! I wasn’t alone – there were 8 panelists who have been affected by this awful disease and 4 of us were IPF Patients. As panelists were speaking on their experiences, I would look at the FDA representatives and I could see that they were moved. That is what we went there to do and I truly believe we accomplished that.
What did you learn when you were there?
As many of us have had to do, I have had major changes this last year. Changes that really impacted me. After our panel was done there was a break and people were coming up to me and talking to me about their own experience or thanking me. It was an unbelievable experience. I learned that I still could contribute in some way. It is good to know what we were doing was important. It gave me a bit of that feeling of accomplishment and purpose that I’ve been missing lately.
How do you feel about your pursuits as an advocate for IPF after having this experience under your belt?
I’m still whirling from the experience. I would love being an advocate for IPF, getting the word out is so important. I was just at the COE I go to for the clinical trial I’m in and I was telling them about my experience and showing them the pictures. There are opportunities to be interviewed by some doctors and the center said they would give out my name when the opportunity arises.
When I completed the summary for the FDA I thought ‘I can really do this!’ So, when I was asked to participate in an afternoon education session for 2nd year medical students at UCONN School of Medicine I said yes. The discussion will be on the impact of chronic diseases on patients and family. You can bet I will tell them the disease that I have. It’s exciting to get that word out so when they become practicing medical professionals and they hear idiopathic pulmonary fibrosis or pulmonary fibrosis, they will hopefully remember what it is.
I just want to add the biggest thing the experience gave me. The in person support groups are few for IPF. In my area there is only 1 and it’s quarterly. The virtual support groups like PatientsLikeMe have been a life changing experience. Many of us feel compassion for each other and cry when they cry and laugh when they laugh and praise those who have accomplished milestones like increase in PFTs or Pulmonary Rehab. It was these virtual groups that got me to a COE and on my journey to living with IPF and not dying with IPF. It still brings me to tears remembering looking out into the audience and seeing over 100 IPF patients some that I have spoken to online and seeing them in person literally takes my breath away to know I really am not alone and that we are many. I got to talk to them in person.
The pictures – UGH! I hate my steroid looks but as Diane, another patient said, this is our new normal. So the selfies are there! Sally taking a picture of me at the FDA podium ~ we got to sit when we spoke with Dr. Lederer from NY Presbyterian Transplant Team, with Diane another IPF panelist and with Sally from PatientsLikeMe
PatientsLikeMe helps so many diseases online and we can think of it as just another online place and not realize there are people behind the scenes that really care for us. Meeting Sally from PatientsLikeMe and seeing her stand up and speak with such compassion about IPF puts a face to such a wonderful organization. I want to thank you for giving me the opportunity; you can’t imagine in a million years what it meant to me. I will be forever grateful.
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