Do Jehovah's Witnesses with Sickle Cell Disease Avoid the Healthcare System?

Objective:

Sickle cell disease (SCD) historically incorporates the use of red blood cell transfusions in the management of many acute SCD related complications. This becomes challenging when managing SCD related complications in Jehovah's Witnesses with religious objections to transfusion. Recent progression in SCD management has provided new alternatives to excellent care without the requirement of blood transfusions. Four medications have been approved by the FDA to modify SCD severity (Tabiti et al. Hematology/Oncology Stem Cell Therapy 2023). This information has been disseminated to the Jehovah's Witnesses through their faith-based infrastructure for medical information. However, the level of awareness of these options is unknown for the Jehovah's Witness community. Prior surveys suggest that over half of adults with SCD in the USA do not see a SCD expert, citing limited access to care because of insurance barriers, transportation distance, and/or other adverse social determinants of health. Many also cite unpleasant experiences with the emergency department, racial bias against people of color, and stigma about opioid treatment for pain. We hypothesized that many Jehovah's Witnesses sickle cell patients do not see SCD experts or avoid the healthcare system for similar reasons with an additional fear of blood transfusions.

Methods:

An anonymous survey was disseminated through the Jehovah's Witness infrastructure for medical information: hospital liaisons, committees, newsletters, and patient blood management centers. Three questions assessed how individuals with SCD in the Jehovah's Witness community avoid hospitalizations and the need for transfusions (Table 1). This survey was generated in a SurveyMonkey questionnaire with an introductory paragraph. This activity was considered preparatory to research and exempt from written informed consent, but voluntary participation in the online survey was considered evidence of assent.

Results:

28 individuals completed the survey. 57% reported having a recent medical visit for a sickle cell pain crisis in the last 6 months. Those 43% who did not seek medical care for severe sickle cell pain report multiple factors that influence their decision making: 29% due to the need/recommendation for transfusion, 54% fear of being labeled a drug seeker, 32% fear of catching COVID or other infection in the waiting room, 18% due to medical/ financial expenses, and 54% due to long waiting room time. 47% also report other factors through free-text comments such as extended hospital stay interfering with everyday activities, prolonged hospital stay due to lack of accepting transfusion, mistreatment by medical staff, lack of urgent attention, fear of being cared for by non trained sickle cell experts, difficulties finding time to be seen in clinic, symptoms making it too difficult to present to a medical center, and managing pain at home with prescribed medications. Different modalities were reportedly used to try to avoid sickle cell crisis: 79% see a physician regularly, 39% see a dentist, 61% get their immunization, and 85.6% report taking their medications regularly: 68% hydroxyurea, 14% voxelotor, 3.6% crizanlizumab, and 0% glutamine. Through free-text a majority report staying hydrated and minimizing stress as other modalities used to avoid crisis.

Conclusions:

Surprisingly only 29% of the Jehovah's Witness respondents reported fear of blood transfusion as their factor to not seek sickle cell care for severe sickle cell pain. The numerous barriers to care reported by Jehovah's Witnesses in this limited survey are parallel to the published reports from the general American SCD population. Both populations note fear of being stereotyped and lack of prompt expert care being the biggest barriers to receiving medical care. This reiterates the continuous need and importance of educating healthcare professionals about implicit biases. Awareness of sickle cell treatment options also seems to be moderately high in the Jehovah's Witnesses community, with 68% taking hydroxyurea, 14% on voxelotor, and 3.6% on crizanlizumab. Although this was a very limited sample size, it suggests that awareness of treatment options is fairly high in the Jehovah's Witness population with SCD. The results continues to reinforce the need to improve general access to care and healthcare delivery for SCD.

Hsu:Nemours/DuPont Children's Hospital: Consultancy; Abt Assoc: Consultancy; DisperSol: Consultancy; Hilton HPC: Consultancy; Asklepion: Research Funding; Pfizer: Research Funding; GBT: Research Funding; Aruvant: Other: data safety monitoring, ended 2023.