As we honor Sickle Cell Awareness Month, what message do you want to send to our patients, families and the community?
Sickle Cell patients are called warriors for a reason. People with Sickle Cell are our friends, our neighbors, our loved ones – and they give to us as much as we should be giving to them. During this time, learning about Sickle Cell Disease, getting educated about it, and thinking of ways to support those around you with Sickle Cell is paramount.
How do you collaborate with your colleagues in the Sickle Cell Program to care for patients with this disease?
As with many chronic diseases, providing good, quality care is a team effort. We try to care for the whole person, not just their disease. That means, for example, me, as a hematologist, coming up with evidence-based recommendations for their care. But we also have an awesome social worker to help address social needs, and we have an amazing psychiatrist who supports and helps each patient understand what it means to have a chronic disease. And we have a local, community-based organization called Michelle’s House, which is the Sickle Cell Disease Association of America’s Southern Connecticut Chapter and can help in ways that we cannot inside the hospital to make sure community members with Sickle Cell are supported.
What are the most effective methods to improve outcomes for patients with Sickle Cell Disease?
We have finally, in the last five years after almost a century of knowing about Sickle Cell Disease, gotten many more therapeutic options – not just medications to treat symptoms of Sickle Cell like pain, but medications that can modify the disease, even with the potential of a cure through gene therapy and better bone marrow transplant methods, which is a big deal. One other important thing is we’re learning about what our patients with Sickle Cell face, both inside and outside the hospital and how it impacts their ability to care for themselves. So, we are combining these medical advances with our knowledge of the experience of people living with Sickle Cell to support the whole person.
As someone who has dedicated herself to caring for people with this disease, what do you feel the public should know about Sickle Cell Disease?
Many of my patients feel unseen because Sickle Cell is a silent disease – you can’t tell by looking at someone if they’re in pain or what their red blood cell looks like. I would want our community in New Haven and greater Connecticut, and our community at YNHH and Smilow, to educate themselves about what Sickle Cell Disease is – an inherited disorder of the red blood cell – and how it affects people’s ability to function through chronic pain, organ damage, anemia, and fatigue. And also to understand the experiences Sickle Cell patients, who are mostly from marginalized populations, have with health and health care. Understanding and leading with empathy is the best thing – and what I want for my patients.
How do you envision treatment for Sickle Cell Disease will advance in the next 10 to 20 years?
I feel confident in the voracious pursuit of a cure for Sickle Cell Disease. I think right now the genesis of that is here – at Smilow, we’re going to open gene therapy trials for Sickle Cell Disease. So, in the next decade, we’ll have refined that and will be able to offer that and support patients through that process, which will be complicated. It won’t just be about administering a medication, but understanding the whole process of achieving a cure – and what that means from a medical standpoint, from a psychological standpoint and a community standpoint. I want Sickle Cell patients to be seen as people who are fully cared for by all the resources we have, including the knowledge we have in health care.