Progress in PF research requires patient participation
My pulmonary fibrosis diagnosis became my call to help every patient
Today, I’m wrapping up another trip around the sun.
On Oct. 4, 1957, the day I was born, the former Soviet Union launched Sputnik 1, Earth’s first artificial satellite. I’ve often wondered if there’s any relationship between my birthday and my love of space. Astronomy was my science during my undergraduate years, when I could explain in detail the definition of a parsec and do the calculations. Not so much today. But I still recall a parsec is 3.26 light-years.
Tomorrow starts a new trip around the sun, and I cannot wait to see what the future holds.
A whole new world and a new lease on life
When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, a whole new world opened up to me. I asked my pulmonologist how I could help. Almost immediately, I learned of opportunities to participate in research. Within a week I was taking part in my first IPF study.
I received my bilateral lung transplant on July 10, 2021. I had a new lease on life, thanks to a generous gift from a donor, and a second birthday to celebrate each year.
Being a transplant recipient didn’t stop my desire to participate in research, however. I’m still being followed in a history study that looks for changes over time based on blood draws.
As a lung transplant recipient, I’ve had to commit to a lifetime of medical surveillance and be disciplined about my medications, to make sure I take them as prescribed. New therapies or treatments in both the pre-transplant and post-transplant realms rely on medications that have been available for some time.
For IPF, the anti-fibrotics Esbriet (pirfenidone) and Ofev (nintedanib) became available in the United States before my diagnosis, following approval in 2014 by the U.S. Food and Drug Administration.
Research requires participation
Why hasn’t another therapy been developed and approved? In my view, it’s not for lack of effort. Serving as a consumer reviewer for the Congressionally Directed Medical Research Programs, I represent the patient voice to a team that’s reviewing research funding proposals. Smart scientists are proposing their hypotheses in the hope of funding under the Peer Reviewed Medical Research Programs. Pulmonary fibrosis is an area of interest.
The pharmaceutical community is working on the next therapy or a cure for PF. Many of these projects don’t become public knowledge until they reach clinical trials. Pulmonary Fibrosis News, in fact, provides information regularly about clinical trials that are underway.
One of us may hold the key that will unravel the mystery behind PF. But for a new therapy or effort toward a cure to be successful, many people must participate. Thankfully, there are a number of ways to take part.
The National Institutes of Health provides an online tool to look up clinical trials that have openings for participants. The Pulmonary Fibrosis Foundation does too.
The PFF Community Registry is seeking patients, caregivers, and family members of people with PF or interstitial lung disease, along with lung transplant recipients, to participate. The data collected are valuable to researchers and provides demographic information on candidates who might be a match for a clinical trial.
It’s so important to participate in these efforts. Any one of us could be the key to a future successful therapy.
I often imagine a future generation that won’t know PF. This trip around the sun has made me more mindful of all that must be done. Tomorrow, I’ll begin another of those trips. And do you know what I want for my birthday? I want everybody reading this column to look at just one of these opportunities. Asking my readers to be a part of the solution is how I continue to make every breath count.
Please leave me a comment to let me know if you found one of these opportunities you can support.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Janice Ruth Moore
I am in England and was diagnosed with IPF in May this year., still waiting to be seen by a Consultant, although had a phone call from him and hope to see him before too long.
I am very willing to participate in Trials, but feel I should perhaps get his go ahead before committing to participate. It is right at the top of my considerable list of questions I am preparing to ask when I get a chance. So will be back whenever possible and certainly agree that the more people participate the higher the likelihood of answers being found for this condition which is life changing.
Samuel Kirton
Hi Janice,
Thanks for reading my column and for your note. You make a great point that participation in any clinical trial should only be done in coordination with your care team. Take that question to your care team and if you are willing please come back and share their answer.
Sam ...
Karen Rachal
Unfortunately I have been turned down for 3 clinical trials and transplant.
Samuel Kirton
Hi Karen,
Thanks for reading my column and for your note. I understand it can be disappointing to turned down for a clinical trial. You should be very proud that you had the courage to volunteer to participate.
If you like you can send me a private message in the Pulmonary Fibrosis News Forums to let me know why you were turned down for transplant.
Sam ...
Ena Ross
I am pre transplant. On Ofev. I will check on any trials I can be in. Oh I would love to help.
Samuel Kirton
Hi Ena,
Thanks so much for reading my column and for your note. I applaud you for being will to check on which clinical trial you may be eligible to support. Come back and let me know what you learn.
Sam ...
Betty J Rhodes
I am on my second clinical trial, that doesnt end until spring 2024. first ond helped me a lot. Somehow I think I am o the placebo part of the 2nd one.
Samuel Kirton
Hi Betty,
Thanks for reading my column and for your note. I am glad you are participating in your 2nd clinical trial, thank you. I also want to add that whether you are on the drug or a placebo, both arms of a clinical trial are equally important.
Sam ...
Paul Bowser
Did you or your spouse smoke?
Samuel Kirton
Hi Paul,
I smoked cigars prior to my diagnosis but there was no indication my cigarss were a contributing factor for my IPF.
Sam ...
Raymond White
Hi Sam
I am in New Zealand, I was diagnosed around June 2020 and I have just been accepted for the Teton2 trial and I am wrapt. I am aware that I was turned down for an earlier trial. I was nominated by my care team but I didn’t meet the test criteria. They subsequently nominated me for this one and following all the preliminaries I have been accepted. I am presently on holiday but I go into test mode when I return to Christchurch in a weeks time. Can’t wait.
I would like to address the point raised by Betty. As you said, from the point of view of the trial, those on the placebo are as important as those on the drug. It is against their results that the effectiveness of the medication is measured. But from a purely selfish viewpoint, just getting onto a trial is a smart move. There are no downsides. For the next year I am, figuratively, going to be poked and prodded and the results of my tests are going to be examined by experts in fibrosis and I will know more about my condition than I now know and knowledge is everything. And if by chance I get the drug I really am in a win win situation, because it may just turn out out to be effective. So to anybody who is thinking of going on a trial but is hesitant, my advice is simple, go for it.
Samuel Kirton
Hi Raymond,
Thanks for reading my column and for reading the comments of other readers. I am in total agreement with you on clinical trials. For anyone hesitant for safety reasons the trials have safety procedures reviewed during there approval process for the trial.
Sam ...