Executive Director of ‘Sickle Cell Warriors Convention’ speaks on disease, 'respectability politics'

The Sickle Cell Consortium and the Houston Sickle Cell Collaborative will be hosting the 10th Annual Warriors Convention, providing an engaging form of education on the disorder and disease affecting millions of people worldwide.

The event will be held July 18 – 23 at the JW Marriott, located at 5150 Westheimer Rd.

The event will not just be about education, there will also be entertainment to keep things upbeat, including a Family Game Night, Homecoming Extravaganza and a Royal Ball.

Bayou Beat News sat down with the Executive Director of the consortium, Dr. Lakiea Bailey, to learn more about the convention and the issues plaguing the Sickle Cell community.

BB: Why did the consortium choose Houston as the host city this year?

Dr. Bailey: When it comes to building our sickle cell community, our goal is to be as inclusive as possible. This means reaching out to patients, caregivers, and anyone who is interested in learning more about sickle cell. We engage with our community by asking them where they want us to go next. We use a map to look at the places we’ve been before. Although we’ve been to Texas before, we noticed that Houston has a large sickle cell population. In order to ensure equitable distribution, we decided to focus on Houston this year.

BB: There has been a lot of commotion about the historic veto by Governor Greg Abbott and the Sickle Cell Registry Bill not being passed. What are the next steps for the consortium when it comes to the registry?

Dr. Bailey: As you can imagine, we were all incredibly disappointed when we learned that after months and months of work, gathering support from both sides of the Hill, the governor decided to veto the Sickle Cell Registry Bill. I don’t fully grasp the rationale he provided regarding privacy concerns, but we know that having a registry is one of the first and most important steps to ensuring accurate, adequate care for the sickle cell community. You can’t treat us unless you first have an accurate count to know who and where we are. Although Governor Abbott has vetoed it, we will be working with all of our partners and supporters throughout Houston and Texas, to ensure that sickle cell patients still get the treatment that they need and can still access services. We will be reaching out to learn more details about his concerns to redesign the rationale for why he’s done what he’s done and the best way to address his concerns.

BB: It’s the 10th anniversary of the convention, How has Sickle Cell awareness grown in the past 10 years?

Dr. Bailey: Fantastic question! I have seen leaps and bounds in this space that make me tentatively incredibly excited. I say tentatively because we often find that in the sickle cell space, we are still fighting battles that were fought decades ago. It was not that long ago that I was in the hospital, and a news interview came on about sickle cell, and I could tell it was like a documentary. I could tell by the cars, clothes, and setting that it had probably been recorded in the late 70s, early 80s. They were concerned and attempting to address the exact same concerns and issues that we are having now. It can be very disheartening to work as hard as we do in this battle to ensure accuracy and adequate health care to find that we’re fighting the same battle as those that came before, but I can honestly say that despite that, I am tentatively hopeful. We are seeing new treatments, new therapies in the pipeline, policies being passed, and it’s all very helpful! As you might know, sickle cell is the perfect disease to study curative therapies. We were the first disease in Western history to have its entire molecular basis known and understood. With that understanding, we become the perfect illness with which to study curative therapies. I don’t think many are aware that several Pulitzer Prizes were won on the back of sickle cell disease, and I think that we’re heading right into seeing yet another. I’m very hopeful that as we prove ourselves time and time again to be the solution to medical mysteries, we will not be left behind and will see amazing improvements in acute care and treatments for this community.

BB: What is the biggest issue facing the sickle cell community right now?

Dr. Bailey: One of the biggest issues facing the sickle cell community that I see is surrounded by injustice in health care. A lot of people find themselves having to fight for the basic standards of care. They find themselves having to implement respectability politics. Making sure they are dressed a certain way and look a certain way and sound a certain way with the hopes that their pain will be taken seriously. But as we all know, respectability politics does not work. That’s simply not the way it works. So when you have to, for all intents and purposes, play games and wager whether or not you’re going to get decent care, the basic published standards of care, when you have to jump through hoops, cross your fingers, pray, and hope, that is an issue. If there were one out of a thousand patients that reported stories of cruelty in the medical system, I could potentially call it an outlier, but the reality is that there are thousands upon thousands of sickle cell patients that all have very similar stories. Many sickle cell patients find themselves in the position of having to choose between death and dignity and no one should be put in that position.

BB: Tell us about the Warriors Convention, why should Houstonians come out?

Dr. Bailey: The Warriors Convention will be hosted as a hybrid event via Whova (virtual) and at the JW Marriott at the Galleria (in-person). People can register to attend the event at sicklecellconvention.org. We are so proud to announce some of our sponsors this year such as our title sponsor, Vertex, and the platinum sponsor, Pfizer. Without the sponsorship from all of our sponsors and their continued support, we would not be able to provide the community with events like these. With every convention, the consortium includes a service project that is planned in partnership with someone in the community. This year’s service project is in partnership with the Houston Health Department and the Houston Collaborative for a community health fair and back-to-school drive. Although the convention is for Sickle Cell Warriors, you don’t have to have sickle cell to attend. The more people we can educate, the more awareness we can bring to our sickle cell community.

Local businesses can register for a vendor booth at the discounted price of $250. The event wraps up with a Health Fair at the 5th Ward Multi-Service Center, including health booths, a blood and marrow drive, sickle cell trait testing, and school supply donations. Health professionals can also register to receive a free booth at the fair.

PLEASE FOLLOW THE LINKS BELOW TO PARTICIPATE IN THE CONVENTION:

Donate: https://kindest.com/dashboard/ws_zwY-YV0fa/pages/pg_HCC77FPmc

Get a ticket to the Royal Gala: https://kindest.com/dashboard/ws_zwY-YV0fa/pages/pg_6DgC5YX2Q

Back to School Wish List: https://www.amazon.com/hz/wishlist/ls/1ARB4TMIRE57S?ref_=wl_share