Landing the Right Advocacy Opportunity
Last updated: September 2023
Editor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles at Sickle-Cell.net.
Through my work in advocacy, an exciting opportunity came my way, one that merged my passion for storytelling with my love of content creation.
I cannot share the nitty-gritty details of the collaboration for legal reasons, but for rare disease warriors who are scared to advocate publicly, I hope this article helps you see the bigger picture.
What is patient advocacy?
Advocacy isn't just about using social media to raise awareness; it is about easing the burden of the patient experience through research, new drug treatments, community programs, and policy reform.
Advocates know the complexities of their disease and have quickly become credible resources for information and support. As patients, we are the nucleus of the healthcare ecosystem and developments in healthcare fail to exist if we don't have a seat at the table.
When it comes to rare disease advocacy, I am...
Patients inspire rare disease treatment advances
Having sickle cell disease (SCD) inspires researchers to study the biology of blood diseases. Our symptoms help pharmaceutical companies to develop better disease-modifying treatment options.
An increasing need for genetic testing helped medical device manufacturers create SickleDex, a test kit that detects the presence of sickle hemoglobin in human blood. In summary, the healthcare industry relies heavily on patient and doctor interactions.1
Becoming intentional about my advocacy work
Following my stem cell transplant, I knew I wanted to be more intentional about my advocacy work, so I reached out to a colleague who has been active in the sickle cell space for over a decade.
At the time, I was focused on creating content around the transplant process, particularly for patients and caregivers eager to hear the patient's perspective. This was mostly because prior to my own stem cell transplant, no patient would speak to me about their experience. They simply did not want to revisit or relive their trauma, which I had to accept.
I joined a patient advisory board
After a few days, my colleague circled back and mentioned that a biopharmaceutical company was putting together an advisory board of patients and caregivers for a prospective clinical trial. The board would meet every quarter to review planning materials and trial protocols. They would offer suggestions, discuss implementation, and highlight key areas of improvement.
Soon after the first 2 sessions, I knew that the work we were doing would significantly change healthcare protocols for all SCD clinical trials by providing holistic care – addressing the physical, mental, spiritual, financial, and social needs of all trial participants.
I manifested the opportunity of a lifetime
I often forget that my decade-long career in public relations precedes me, because my contributions ultimately shaped this potential research study's messaging and visual identity.
One fine day, the company's medical director called in, just to observe the session. She quickly took notice of the viewpoints I shared and discussed. A few days later, I received an email from her team asking if I'd consider a part-time consulting role to support their internal and external communication needs. It was a definite yes!
My mom always said, "In anything you do in life, always do your best because you never know who is watching." And that is exactly what has manifested. I am covered in goosebumps as I write this because reality has set in. The opportunity of a lifetime was indeed a full-circle moment, for mother knows best.
Owning how our stories are told
I'm often hurt by the misrepresentation of SCD by the media. It's either sickle cell is one big comedic joke (e.g., the show Velma on HBO Max). Or in the context of the character's storyline, the disease is casually mentioned through the use of a prop, a clear example of making sickle cell an afterthought (e.g., Marsai Martin's show, Saturdays on Disney Plus).
My goal has always been to take ownership of how my story is told, and the same reasoning applies to my YouTube series "The Diary of a #SickleCellProdigy," where I interview sickle cell patients who are thriving despite the odds. I want them to tell their stories in their own words and on their own terms because authenticity and originality are important to me.
My story is powerful
A project of this scale requires the expertise of many talented people, and I couldn't have asked for a more incredible team. We started by breaking down my life story into stages, from early childhood to adolescence.
We discussed the trans-Atlantic stage of leaving secondary school in Nigeria to attend university in Austin, Texas, and then we made our way to present-day Wunmi. I didn't think my life story was worth telling until we started shooting, and I could read the faces all around me – utter shock for the things I survived, wrapped in admiration because I'm still standing.
My story has purpose
The best part was that I got to share this moment with one of my heroes, my older brother, who saved my life the moment he decided to donate his stem cells to me.
Using my life story to effect change fundamentally aligns with who I am as a person, so getting this opportunity, which I strongly believe was orchestrated by God, reminded me of my purpose while encouraging me to keep going.
How often do you run out of spoons?