Finding a Seat at the Advocacy Table

With the nominations for the #SocialHealthAwards well underway, I started thinking about my own journey to advocacy. It's been far from the norm. My perspective on activism and advocacy is shaped by my interests, talent/abilities, patient experience (in and out of the hospital), and time. I certainly don't think there is a one-size-fits-all format for advocacy.

As an atypical advocate, I can share that what's important to you may not be important to everyone you meet in the advocacy space. Every group has its own agenda and approach. Regardless, I always try to see the glass half-full instead of half-empty; I foster mutually beneficial relationships that promote cross-collaboration. As long as the end goal is to raise awareness for sickle cell disease publicly, in ways that inform social or political change, there is room for allied partnership.

How I got started

Since birth, I have received medical care in 6 different countries – Nigeria, Ghana, Côte d'Ivoire, United Kingdom, Canada, and the US - each one, with its own standard of care practices for sickle cell treatment. Even though I have a global perspective on healthcare protocols, I grew up in a country (Nigeria) where sickle cell is a social stigma. The impact of this cultural ideal on me was a shame.

Whenever I was asked to speak about my battle with sickle cell openly, I found myself crippled by the fear of what people will think. I'd ask myself "Will I be judged or stigmatized for my chronic illness?". Petrified by an unknown answer, I'd retreat and hide in my shell.

Nevertheless, in 2015, I was told that I possibly had 6 months to live following a mycobacterium avium complex detection in a blood sample. From that moment, I decided it was time to build my legacy and have a positive impact on the global sickle cell community. On June 19th, I caught wind of a social media challenge called #BoldLipsforSickleCell. People wore red or brightly-colored lipstick to raise awareness and stand in solidarity with warriors around the world. That is when I got involved.

A call to action

To better understand patient advocacy, I volunteered as a freelance public relations (PR) consultant for Bold Plus+ and Sickle Cell 101. Both are reputable organizations in sickle cell education and research. The experience I gained was such a blessing because it taught me three key things:

1. How to show up in patient advocacy spaces
2. Knowing my rights as a patient and taking equal responsibility in my own care
3. The benefits of research studies in treatment advancements

Learning from established, mission-driven, non-profit organizations is invaluable. It gives you a real sense of community where you can make strong connections with like-minded people who share the same chronic illness. Working in advocacy gives you the opportunity to shift your skill set and learn all about new treatment options. It also lets you see the value of impactful work.

Finding a seat at the advocacy table

On June 20th, 2017, the patient community was heartbroken by the sudden passing of 42-year-old HipHop rapper and advocate – Prodigy – who died from complications of sickle cell disease. The news broke just one day after #WorldSickleCellDay and the community was eager to honor his legacy.

As a PR expert and industry veteran, I facilitate brand partnerships, content creation, and influencer marketing with top brands. So, with my digital media experience, I created an awareness campaign that called on patients with sickle cell to share their exceptional talents using the hashtag #SickleCellProdigy.

The world needed to see patients, from every country and region, excelling in different spaces – entertainment, fine arts, technology, business, and much more. I truly believe that celebrating the achievements of patients with sickle cell can help the healthcare industry see patients as people first and lean toward providing compassionate and respectful care.

From that point on, my advocacy goal was to erase the stigma of sickle cell disease through proactive engagement with the media – traditional and digital media. Unconventionally, I found a seat at the advocacy table by using my skills and passion as a platform for advocacy and awareness.

Tips for becoming a sickle cell advocate

• Start with research- When you advocate for a chronic illness, there is no room for propaganda or misinformation. Your message, in some cases, informs a patient's health decision or choice. To be a credible resource, you need to know the difference between facts and unsupported beliefs. Therefore, your goal should be to learn all you can about the disease and stay up to date with new data.
• Tell your own story- Before you advocate for others, you need to own your disease and share your diagnosis with the people closest to you. Standing in your truth takes courage but it can be an empowering experience. Remember the goal of advocacy is to educate the public, not alienate them.
• Find a network- Social media gives you access to the community in just one click. Social networking platforms like Facebook, Twitter, or Clubhouse allow you to share experiences, attend virtual conferences, and connect with certifiable organizations in the sickle cell space.