Ask The Advocates: Importance Of Research and Advocacy
The definition of advocacy is to support another by giving them a voice. This, I think, rings so true when being part of the current CF community. Sometimes we are unable to meet in person to discuss similar symptoms, worries or needs. But we can still use research and advocacy in the cystic fibrosis community as a way to lift up and support each other.
This has been one of the most invaluable things that helped me to manage my condition over the years.
I think another well recognised example of this would be looking at how the “Vertex breakthrough” with modulators such as Symdeco and Trikafta. This called upon many of us - patients, family, friends and clinicians to take a stand.
We needed to be seen and heard which really united the CF community. This approach helped many countries gain access to these novel medications through the power campaigning together.
Share your narrative
Many of us have rallied, written letters, signed partitions, used our online platforms to raise awareness as well as share our own experiences in hopes of helping others.
This beautiful sense of a well-rounded, global CF community has grown in size and sheer strength. This is thanks to the many patients, parents and clinicians continuing to share their CF narratives.
The “Vertex breakthrough” also highlights the importance of CF research to ensure we are constantly moving toward a future where patients can live a life unlimited. Life with less treatment burdens, hospital stays or life expectancy threats.
Research helps level the playing field. It removes some of the power this CF has over us.
Forcing the face of CF to change
Without the use of CF research we wouldn’t have identified the faulty CF gene back in 1990. Its likely cross infection would have gone unrecognised. We would have never made breakthroughs with new medications such as modulators. Or work towards managing difficult to treat infections such as Cepacia or Mycobacterium Abscessus.
Alongside all the wonderful breakthroughs, advocacy and research is crucial to create a much needed space for discussions, and analysis of unwanted side effects to medications.
The power of research
It allows for patients to voice the mental strain that so easily blends with chronic illness. This has enabled us to identify that higher rates of depression, anxiety and complex PTSD exist within the CF community.
These are just a few of the examples that show when we focus on research, the face of CF is forced to change. Approaching my 34th year - I am certain that without the power of research I would not have made it this far.
A healthier future
I can not picture a CF community not driven by research and patient advocacy. In my opinion it is just as important as getting all my nebs and physio in!
We still have a long way to go before CF is a thing of the past. But I truly believe that if we continue to prioritise CF research and advocacy, the collective force of science and humanity will continue to succeed in creating a healthier future for all.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?