“I hate going to the emergency room. They don’t even have a protocol for sickle cell, so you’re waiting along with everyone else and your pain is increasing and then it makes it even worse because you’re not getting the treatment that you need to be getting. On top of that, [...] because you're so educated on your own sickle cell and how it affects you and what works for you, they label your ass a drug addict and then you have to go through the whole process of trying to explain to them that I'm not a drug addict. This is what it is. I'm not a regular. Call my doctor. It’s like I'm fighting for myself and advocating for myself. There’s been times where they refused to treat me. [...] That’s the reason why my grandmother and my aunt died, because there was so many doctors that were uneducated and didn’t really know how to treat sickle cell and that’s why they passed away. One hospital over medicated them and then another hospital didn’t do anything at all because they didn’t know.” -Patient

Patients with SCD rely on the ER as part of their care, but the experience is so poor that many avoid going until they can't manage their crisis at home anymore. ER protocols for SCD vary or aren't in place at all, and ER clinicians are often unfamiliar with SCD. This results in long wait times and inadequate treatment in what could be a life-threatening crisis. Patients also face racial bias and drug-seeking stigma from clinicians in the ER and beyond. These factors force patients to forego the ER or ask to be hospitalized in hopes of getting more knowledgeable care (which is expensive and time-consuming, not an option for those with less resources). Patients often deploy strategies for coping with these issues, with varying levels of success: projecting credibility to connect with clinicians by bringing an advocate, modulating communication styles, and/or concealing their pain; going to "better" ERs often far from their homes, even if access to transportation is a barrier.

Challenges

• How might we help improve and crystalize SCD protocols for personnel in the Emergency Department?
• How might we help patients find and access SCD-friendly medical centers and emergency departments?
• How might we remove racial and social bias against patients with SCD in the Emergency Department?
• How might we ensure that individualized SCD care plans are followed by ER providers?
• How might we improve education around SCD to empower patients to get better care in the ER?
• How might we improve access to resources (payment, support network, transportation and others) to make going to the ER an easier decision for the patient?
• How might we improve access to patient advocates and support services during the COVID-19 pandemic based on current restrictions?

Learn More:

• Inspiration: Areas of Opportunity >
• Recommended Reading >
• Data Sets >