Balancing the pros and cons of participating in medical research
What to consider before taking part in new research on pulmonary hypertension
When I was 6 years old, I was entered into a clinical trial for Tracleer (bosentan). At the time, the pulmonary hypertension (PH) community was pushing to have this drug approved for pediatric use, which made me an ideal candidate. Twenty years later, this drug is a primary treatment for the illness in both adults and children.
Honestly, I don’t remember much from this experience. I do, however, remember that my parents and I were OK with me entering the trial, given that testing was minimal and would mostly coincide with my regular lab work and checkups. Regardless, I’ve always thought it was pretty special that I played a small role in advancing this treatment option for the PH community.
Throughout my time living with a rare illness, I encountered many scenarios in which I was asked to participate in either clinical research or teaching opportunities. Over the years, and especially as a young adult, I felt a lot of pressure to instantly consent to these requests.
Because PH is a rare illness, the patient population is limited. As a result, there’s a finite testing pool when it comes to progressing treatments, understanding disease patterns, and educating new providers.
Being one of the few who could offer themselves as a resource for these efforts always weighed on me. It felt like my duty to participate when asked. Of course, the hope was that these pursuits would benefit me in the long run.
This mentality remains with me today, as I now carry the rare combination of a heart and lung transplant. With that said, my years of experience with these scenarios have forced me to take stock of my own well-being, priorities, and ability to say no when needed.
Taking the personal impact into consideration
Just recently, I was in the hospital with a significant case of respiratory syncytial virus, perhaps better known as RSV. One provider breezed in for rounds with a resident in tow. At the end of the conversation, he explained that they’d like to do a quick heart echo so that the resident could view my transplanted heart. At the time, I was on my ventilator, which quite literally left me without much of a voice in the matter.
It was then that my mom came in, taking quick stock of the situation. I wasn’t feeling well, it was still early, and in a time of high health stress, this was an additional test that I didn’t need. After a brief conversation with the provider, my mom and nurse squashed the efforts, which I was incredibly grateful for.
On a different day, I would’ve been completely willing to participate in this resident’s education on heart transplantation. But in this context, the cons outweighed the pros. At that moment, it was important that my well-being and comfort were taken into consideration.
Clinical trials and medical research can take many forms. In one season of illness, they can appear as an immense inconvenience. In another, they can take the shape of a much-needed Hail Mary. And sometimes, it’s somewhere in between — an opportunity to make a sacrifice in exchange for increased data, progress forward, and a bit of hope.
Whenever these opportunities come across my path as a rare illness warrior, I always hope to keep an open mind. I ardently believe in the importance of clinical research, and I don’t mind taking it on as part of my fight.
With that said, it’s always important to value my time, comfort, and even emotional bandwidth with each request. I hope to say yes when it makes sense, but it should never be the default answer. Each scenario is different and deserves separate and thorough evaluation.
Some opportunities, such as the one I entered into early on in my journey, may feel exciting and even liberating. Others will perhaps present more burden than I’m capable of carrying at that time. Either way, any feelings I have are undeniably valid, and the choice is mine to make.
Ultimately, I never want to forget my agency when considering these decisions. Even small offers will inevitably affect me as an individual, and I owe it to myself to always include any potential personal impact on my list of pros and cons.
Note: Pulmonary Hypertension 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 Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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