AABB24: Sickle Cell Disease Psychosocial Support and Advocacy

Psychosocial support can improve the quality of life of patients with sickle cell disease (SCD) and help sickle cell warriors manage treatment effectively. The Saturday session, “Sickle Cell Disease Psychosocial Support and Advocacy,” provided attendees with insight into the challenges patients with SCD face in the new era of approved SCD gene therapies and discussed advocacy efforts and resources for this patient population.  

Yvette C. Tanhehco, MD, PhD, MS, CABP, associate professor of pathology and cell Biology at Columbia University Irving Medical Center (CUIMC) and the director of the Cellular Therapy Laboratory and Assistant Director of Transfusion Medicine at New York-Presbyterian Hospital/CUIMC, shared common psychosocial challenges and complications for adult and pediatric patients with SCD.  

“Pain is the hallmark of SCD. These patients can experience acute pain and chronic pain. Acute pain is pain that arises from vaso-occlusive crisis (VOC), which are unpredictable and can be excruciating," she explained. "Because of chronic pain, patients with SCD have decreased social functioning, food consumption, physical activity, mobility, and they can experience negative emotions, including recurrent feelings of fear, uselessness and helplessness. Anxiety is a common problem with patients with SCD. There is a correlation between anxiety and depression. Symptoms of depression can start at a young age." 

Tanhehco shared a recent study that examined the associations of biopsychosocial variables with disease specific measures of pain impact. The study involved 657 children and adults. 

“The results suggest that social and emotional functioning are more strongly associated with pain impact in individuals with SCD and underscores the need for further multicenter prospective longitudinal studies aimed at identifying modifiable psychosocial predictors of adverse pain outcomes in patients,” Tanhehco told the audience.  

Patients typically alter their goals, their employment and other aspects of their lives due to the unpredictability of pain and its comorbidities, she noted. This additional stress can lead to depression, anxiety, sleep disturbance and fatigue, as well as other psychosocial comorbidities like catastrophizing, opioids and other substance use and interpersonal relationship issues. She presented research that showed patients with social support Interventions (i.e., support groups, family interventions), had fewer ED visits and reduced feelings of depression. 

Tanhehco also touched on stigma as a psychosocial comorbidity, noting that, “African Americans are particularly stigmatized in the United States because the disease primarily affects them. And there's a great need to use opioids to treat the pain. They can also be stigmatized by health care workers, and discrimination in the health care setting correlates with greater pain severity.” 

At the end of her presentation, Tanhehco noted a need for more randomized controlled trials and comparative effectiveness studies to make any definitive conclusions about the role and impact of psychosocial factors on the pain experiences and outcomes of patients with sickle cell disease. “I hope I've convinced you that psychosocial comorbidities are very important to manage SCD and to improve their outcomes," Tanhehco said.  

Advocacy for the SCD Community 

Adrienne Shapiro, founder & CEO of Axis Advocacy, discussed the importance of advocacy for patients with SCD and her personal journey as a stem cell patient advocate. We have come a long way in a very short period of time, she said.  

“I am the fifth generation of mothers in my family to have a child with SCD," Shapiro shared. "I got into this space looking for a cure for my child from the standpoint of stem cell research. I had my eyes opened to the dark reality of what it meant for most people living with SCD to get proper care.”  

Shapiro discussed patient trust and education and providers as gatekeepers and emphasized the importance of understanding the financial burden of treating SCD warriors over their lifetime, gene therapy payment models and the process of new gene and cell therapies.  

“There is a lack of patient trust in the current health care system and a lack of education of what the new gene/cell therapies really are,” she noted. “I am elated about the new gene therapies. It’s going to help not only those of us with sickle cell, but so many others with rare disorders. I have wiped the tears of so many mothers as they have lost their children or gotten these diagnoses, and it's not just the sickle world. But we have to get the education of what it is and understand the mechanics, resources and time commitment. We have to be honest about what it takes to go through the process.”  

Shapiro encouraged the audience to continue advocating for the SCD community. Advocacy, she noted, is needed everywhere.  

“Advocacy has gotten us to where we are today. But it’s still needed in pharmaceutical development, social services, legislation, research, policy and education,” Shapiro noted. “My organization also advocates for getting the people who make the decisions to understand what it takes for you to do your research and job and why compensation for the work you are doing is so important. We're making some headway for reimbursement for hematologists and services, and I want you to know that it's not one sided. We're not in this alone, and neither are you.”  

Attendee Sadatra Everett, Mercy Medical Center, said the session hit close to home for her. “I have friends that have been affected by sickle cell disease. I recognize that there is a lack of information for patients with SCD and sometimes the sickle cell provider, including the health care system, blood banks and doctors,” Everett noted. “The mindset is some of the patients are just seeking medications because they're in pain and that they're addicted and want pain medicine without understanding their pain is not something that they created. It's a genetic condition that they're dealing with, and we have to be more open and more humane when it comes to providing the best care.” 

Lucia, an attendee from New York, noted her excitement to see psychosocial support covered during this year’s AABB Annual Meeting. “My nephew has SCD, so this is something that's near and dear to my heart,” she said. “I focused on this topic in grad school. This topic isn’t something that is covered a lot with sickle cell care, so this session was great.”