Melissa Sulpher has pulmonary fibrosis and participated in a clinical trial at the Firestone Institute for Respiratory Health. You can learn more about the successful clinical trial here . Below, Melissa opens up to Clinical Trials Ontario about her experience with this clinical trial.
Can you tell us about your health story and involvement in clinical trials?
I was diagnosed about ten years ago at the age of 28 with a rare disease called pulmonary fibrosis (PF) that they think was caused by mould in our old house. It is generally a progressive disease where continuous inflammation in your lungs eventually leads to scar tissue, which makes it harder and harder to breath. So little things like going up stairs and getting dressed and playing with my kids makes me gasp for breath, and has often made me dependent on carrying around an oxygen tank.
When I was diagnosed, the only treatment available (if steroids weren’t effective) was a lung transplant once you got sick enough. So it was very exciting in the world of PF when a couple of years ago two new drugs were developed to help prevent scar tissue from forming in the lungs of PF patients. I consider myself very lucky to have participated in a world-wide study for one of those medications called Ofev. Although this medication won’t make me any better, if it can help me put off needing a lung transplant for even a couple of years, that makes a huge difference for me. The drug is only available for people in the study until it is approved by Health Canada, which can take a couple of years. So being able to participate in this trial (that ultimately proved the medication was effective) gave me access to this drug for an additional 2-3 years. I’m at the point in my disease where every percentage of lung function I lose is another limitation in my life. So even though it may seem anticlimactic to have a drug that only slows further decline, this couldn’t be further from the truth.
Why do clinical trials matter to you and/or your family? For Ontario broadly?
Clinical trials in general are very important to make sure we have good quality evidence to support treatment. Treating rare diseases in particular can be very expensive so it is especially important to have good evidence in order to present a solid case to the government that these treatments are worth the cost.
Participating in this trial has given me a lot of hope for the future. I’m hopeful that with more clinical trials and research, other treatments for PF can be discovered and refined. This is the tip of the iceberg for treating PF in my opinion. Maybe I can put off a lung transplant long enough that they can find a treatment to repair the scar tissue in my lungs, or find a way to use my own tissues to grow new lungs so I don’t have all the issues related to organ transplant rejection, or maybe they can find new anti-rejection medications with less side effects….I’ve got big dreams! I don’t think it’s overstating matters to say this medication is a game-changer for PF, and it absolutely wouldn’t be possible without good quality clinical trials https://nygoodhealth.com.
What advice would you give to others interested in participating in clinical trials?
I would advise anyone thinking about participating in a clinical trial to talk carefully with your doctor and healthcare team to decide if it’s the right fit for you. There are often limitations within trials that you need to weigh the risks and benefits for your particular situation. For example, in the study I was part of, certain immunosuppressant medications weren’t allowed because they needed to carefully evaluate whether the results were from the particular drug I was on. This is an important part of making sure the clinical trial gives meaningful and robust results, but you need to make sure that’s right for you. I was provided with a detailed explanation of the trial – the risks, the benefits, the tests required, the time commitment, etc. This was really helpful information to help me make my decision to participate.
It’s also important to remember that you can always stop taking part in a trial at any time (obviously taking into account safety considerations if there are any related to withdrawing). This is another important feature because it means you know you have options. I have always felt I was in control of my participation in the clinical trial. I love that I’m able to help further research, but I’m also cognisant of the fact that they are gaining really valuable information from my participation.
My experience in clinical trials has been overwhelmingly positive. They’ve taken exceptional care of me. I would have no hesitation about considering another trial should the opportunity present itself again – in fact I look forward to that opportunity!