Raising Awareness About the Benefits of Clinical Trials

A columnist makes the case for medical studies and patient recruitment

by Jen Cueva | January 25, 2023

Life with pulmonary hypertension (PH), a rare disease with no cure, is challenging. The helplessness is compounded by the fact that a solution may exist, but it’s currently out of reach. To get through these emotions, we who have PH rely on faith and hope to motivate us along our journeys.

Unlike some others who are also living with rare diseases, however, we’re fortunate to have clinical trials to test new and innovative investigational therapies.

It may take a lot of research to find the cure we desperately seek, but each new study brings us one step closer to reaching that invaluable goal. For this reason, I believe each trial is a cause for celebration and optimism as we anxiously await the day PH can be eradicated from society.

Importance of clinical trials

Clinical trials offer a unique opportunity for rare disease communities to gain access to cutting-edge investigational treatments that might otherwise be unavailable. They allow researchers to study poorly understood diseases and develop therapies that could benefit many people.

Clinical trials often provide participants with free medical care throughout the study, which especially benefits those who cannot otherwise afford it.

But we face many challenges

Despite these potential benefits, rare disease communities face many challenges when it comes to participating in clinical trials. Recruiting participants, for example, is often difficult because of limited access to resources and awareness about research opportunities.

Financial costs associated with travel and other needs may further limit participation. Sponsors often cover travel costs, however, which many people don’t know.

Additionally, some may feel uncomfortable participating in a potentially risky procedure or fear the possible side effects of experimental treatments. They might choose to avoid a clinical trial despite its potential benefits.

Don’t bombard us with calls

Many patients have days when they just feel like crap. I can relate. Traveling to the clinic for a possible trial or talking on the phone can be exhausting. Email is another option, and it’s my preferred choice.

But we’re past the days when only traditional studies were available. Did you know that some trials are remote or hybrid, meaning that you can participate at home, or at least partly at home? These options might work well for those with PH or others in the rare disease community.

Grateful to help others

I’m grateful to have the opportunity to work a few hours per week as a columnist for Pulmonary Hypertension News and as a co-moderator of the PH News Forums. Both of these offer an incredible platform for me to share my life experiences with PH while supporting and inspiring hope in others.

Because I worked in nursing before my PH diagnosis, I’ve found other ways to help people in the rare disease communities. Most recently, I had an opportunity to help others by assisting the Bionews Clinical team. I can’t adequately describe my excitement when we’re able to connect a rare disease patient with a potential clinical trial that could improve their quality of life.

Our team has extensive knowledge about clinical trials and patient engagement, including recruitment. Because more than 70% of the Bionews team is composed of patients, many of them are participating in, or have participated in, clinical trials. This gives us insight into their processes and challenges.

Clinical trials offer a valuable opportunity for rare disease communities. Without these trials and the volunteers who participate, many current treatment options wouldn’t be available. I’m forever grateful that more medications have become available since my diagnosis. In fact, I’ve been taking oral treatments for almost 18 years.

Knowledge is key

Despite the obstacles, we must continue our efforts to find solutions through clinical research. Only then will we truly unlock our tremendous potential for discovering treatments and cures for these rare conditions that affect so many lives around the world, every day.

If you are a patient or caregiver hoping to learn more about PH research, please feel free to contact me. I would love to talk to you and share some information about how we can work to bridge the gap between those with PH and potential clinical trials.

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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About the Author

Jen Cueva Jen Cueva lives in San Diego, California, with her husband and daughter. Jen worked in nursing before the script changed upon her diagnosis of pulmonary hypertension (PH), group 1, in 2005. Advocacy has been essential to her life. Her passion is to instill hope and remind others in the PH community that they are not alone. To do this, she serves as a forum moderator for Pulmonary Hypertension News and in her weekly column she delves into the roller coaster of emotions that accompany PH. It is powerful and meaningful to her to have this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey. Together, we PHight stronger!

Raising Awareness About the Benefits of Clinical Trials