A Recap of the Sickle Cell Leadership Summit

A few weeks ago, I was invited to the Sickle Cell Community Consortium's Leadership Summit in Atlanta. It was the first time health leaders, patient advocates, caregivers, pharmaceutical companies, and community-based organizations (CBOs) could meet in person since the Covid-19 pandemic, which forced us to adapt to virtual business meetings instead.

As someone who is relatively new to the advocacy space, I was nervous to be in a room filled with advocacy heavyweights; people with a guaranteed seat at the healthcare table for all things sickle cell research, treatment, and care. Imposter syndrome and nerves were about to get the best of me but I quickly set them aside when I reached out to some colleagues who confirmed that they would also be in attendance.

Conference preparation

Even as a transplant survivor, I still deal with some complications from sickle cell disease (SCD) so it was important for me to take precautionary steps to ensure that my trip was successful. My healthcare team scheduled phlebotomy (which tackles iron overload) 4 days before my trip so I knew I'd experience some fatigue and joint pain in the aftermath. To counter these symptoms, I increased my folic acid and water intake and followed up with 8 hours of sleep each night. Living with a chronic illness means working with your body, not against it.

Flights have often been a trigger for my pain crisis and with a lower hemoglobin level, particularly after chelation therapy, I knew I needed to stay hydrated, walk around the plane to prevent blood clots, and have my pain meds easily accessible. I wanted to give myself time to settle in Atlanta, so I arrived 2 days early and stayed with my extended family. This gave me an opportunity to see loved ones, prepare for what was a fully booked conference, and adjust to the Atlanta heat, which was a big change from the Seattle rain.

And it's off to the races...

The first day of the Summit was a half-day, dedicated to Covid-19 testing, room assignments, CBO accreditation, and a meet & greet with attendees followed by a welcome reception. As a board director for Through The Pain Inc., a 501(c)3 non-profit that provides patient-centered services to sickle cell warriors and their families, I opted to room with the organization's CEO, Dima Hendricks. Unlike myself, she was a registered partner with the Consortium and knew most of the people in the room, which worked in my favor because she made introductions a breeze.

After the formalities were over, we delved head first into the 3-day schedule, starting with a welcome address from members of the consortium's general assembly. On day two, we started off bright and early with morning mindfulness and yoga, followed by a slew of presentations from the Sickle Cell Disease Association of America, Pfizer Pharmaceuticals, Agios Pharmaceuticals, the National Heart, Lung, and Blood Institute's (NHLBI) Cure Sickle Cell Initiative, Vertex Pharmaceuticals, Editas Medicine, and BlueBird Bio.

Each company presented information on clinical trials for sickle cell disease; providing updated information and education on both disease-modifying treatments and curative therapies. The landscape of therapies has changed significantly and I'm optimistic about the future of sickle cell treatment, especially for our younger warriors in the global community. They will have every possible chance to thrive and live well with sickle cell.

For me, one of the highlights of the summit was connecting with patient advocates who live cross-country and learning about the important work they've done. It gave me the fuel I needed to keep going and challenged me to continue to do more. As a Nigerian, I found myself having intimate discussions about health disparities with some of the international partners from Uganda, Zambia, Jamaica, and Canada. Personally, I think the needs of patients outside the US border are often ignored when they really should be deemed equally as important but I digress.

Key learnings from the summit

• A snapshot of priorities

  A pivotal moment at the summit was when a fearless advocate asked the senior management of Vertex, Pfizer, and Agios Pharmaceuticals if they loved the SCD community. At first, I wondered where his rant was going but shortly after, he posed a question about the Sickle Cell Disease Comprehensive Care Act. This bipartisan legislation will focus on improving access to comprehensive, high-quality, outpatient care - including clinical and support services - for individuals with sickle cell disease. He wondered why the pharmaceutical companies weren't making the bill a priority if they were truly invested in sickle cell patient care.

• Tools of the trade

  Patient advocacy is a multi-faceted endeavor so if you dare to use your voice to drive real change, you're going to need to spruce up your skills. To support the CBOs, the consortium arranged a series of workshops and training sessions, going over topics like coordinating advocacy day in your state, developing a bio-sketch for grants, crafting your advocacy resume, and ways to get certification as a community health worker. An unexpected bonus was having a photographer on-site to assist with professional headshots.

• Collaboration & opportunity

  There is strength in presenting a unified voice and the summit provided the perfect backdrop for cross-collaborations between CBOs and key players in the pharmaceutical industry. It is estimated that the US sickle cell disease market will be worth $4.8 billion by 2030, which means more investments will go into clinical trials, research studies, and disease-modifying treatment options. So now that we have their attention, the responsibility is on us to make sure that other patient needs are brought to the forefront.