I was looking back through my advocacy work and areas of asthma that I have been championing for. I am grateful that I have had the opportunity to be involved with patient groups and in advocacy, however, I feel as my life with asthma has evolved and so have my wishes and desires for my asthma.
About a decade ago I wanted any form of improved quality of life that I could get. I believed that the diagnosis process and navigation for patients were a nightmare. I still believe these are important messages and change is still necessary. However, I also wonder are there other areas that I now want to pursue or better ways to drive home advocacy messages. What asthma advocacy areas are important to you? Where would you like improvements or developments?
Here is a recap of asthma areas that I have been and am currently passionate about:
Then: (circa 2008 - 2018)
- Advocating for biologics to come to market. I had benefited from their use in clinical trials yet they were not available by prescription then.
- Asthma biomarker research. In particular, getting a better understanding of how these are used in clinical practice and helping patients understand their use and importance. As this area is developing, access to testing in “routine care” continues to be an issue for both providers and patients.
- Educating on the use and burden of oral corticosteroid use in asthma.
- Biologics are still an important part of my life, however many strides have been made. Biologics have come to market and are available as part of routine care. While this treatment option has not always been perfect for me, it has improved my asthma control and quality of life. I do appreciate that this option may not be for everyone and that some biologics are still in development for other phenotypes.
- I am excited to see where biomarkers will go in asthma research. I am hoping that this will help improve diagnosis experiences for patients and lead to more patients being connected to more targeted therapies.
- I am happy to see that there is a lot more buzz about oral corticosteroid use in asthma. My advocacy has been in highlighting the burden and cumulative use factors. This will likely remain as something that I will keep advocating for, while I have just been able to finally come off of daily use of oral corticosteroids. There is always a fear that I may have to return to being dependent on them. In my opinion, the burden is just too high and many are not aware of how great this burden is on patients' quality of life.
My thoughts on asthma advocacy work
Advocacy is important. However, it can also be exhausting. I have often wondered if I should keep doing it. I want to be part of this movement, however, what I have realized is that I need to engage in the areas that I am most passionate about and be realistic about the outcomes. It can be a long tedious process and there are times where the patient voice is not heard, however, I have confidence that every patient's voice helps to pave the way.
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