In this MD Newsline exclusive interview with Krystal Preston, PharmD, we discuss her personal experiences with receiving disparate sickle cell disease treatment as a patient. We also discuss how health care professionals can rectify sickle cell disease disparities in care.
Have you personally experienced disparities in care as a patient with sickle cell disease?
Krystal Preston, PharmD:
“Yes, I have. I have observed and experienced firsthand the myths, disparities, systemic inequalities, biases, and distorted perceptions around Black people’s pain and the treatment of sickle cell disease. I’ve been ignored and had my pain minimized.
For example, I once sat in an emergency department waiting room for 6 hours in agonizing pain due to a vaso-occlusive crisis. The ED was not crowded, yet it appeared that my pain was last on everyone’s list.
So, once I was finally seen, I was given fluids, morphine, and a prescription for Norco to go home with. So then I asked, ‘Would I be receiving a chest x-ray?’ Because a chest x-ray is part of the standard workup for anyone experiencing a vaso-occlusive crisis with chest pain. The doctor told me, ‘Oh, your lungs sounded clear, so you’re free to go.’
And I ended up back in another ED the next morning because I was still in pain, nothing was working for it, not even the Norco that they sent me home with, and I was sure I had pneumonia.
As soon as I walked into that ED, they took me straight back after triaging, and they did a chest x-ray and blood tests and gave me pain medication and fluids. Once all the tests came back, they found out that I did have pneumonia. So, I immediately began antibiotic treatment, and I was in the hospital for about 3 days.
For me, access to care and having properly trained staff were the determining factors of my outcome in this instance. Also, as a patient and a provider, I was able to advocate for myself. But other patients with sickle cell disease may not be able to do that.
Now, I will give credit where credit is due. A lot of patients with sickle cell disease know their bodies and know what works for them. But in terms of knowing how we work up a patient with sickle cell disease and the treatments we have for complications from a vaso-occlusive crisis—they may not be able to speak up for themselves in those ways. So that’s why we as providers need to be well-educated on sickle cell disease and take the time to treat our patients properly.”
How would you recommend health care professionals rectify the disparities in care experienced by patients with sickle cell disease?
Krystal Preston, PharmD:
“Health disparities, especially ones that affect minority communities, are very complex. So, we first have to recognize the factors that contribute to these disparities, such as biases, whether conscious or unconscious, based on gender, race, socioeconomic status, education level, and other social determinants of health.
Then, we have to consider access to care. Are these patients able to afford this care? Is there a facility within the patient’s geographic area where they can seek treatment? Lastly, we must consider the availability of professionals within the healthcare system who are specifically trained to provide proper care for diseases such as sickle cell disease.
Once we recognize the factors that contribute to these disparities, we can keep these types of conversations going and then begin to work on solutions which include policy changes, continuing education on treating a complex disease such as sickle cell disease, as well as more implicit bias training, cultural competence training, and empathy training, and ongoing research for better treatments that would be able to reach more patients.
Then the next steps would include adjusting our future behaviors based on the education provided and engaging in an ongoing critique of our behaviors, attitudes, and biases through patient feedback and self-reflection. Lastly, healthcare professionals should work collaboratively to ensure a checks and balances system is in place when evaluating treatment plans for sickle cell disease.
For example, when I sought care at the University of Illinois at Chicago sickle cell clinic after my last major sickle cell crisis 5 years ago, I was seen by a pharmacist, a nurse practitioner, a social worker, as well as the physician team.
They evaluated all aspects of my care, including immunization history, medications, full workup of factors that contribute to how a vaso-occlusive crisis occurs, other disease states that I have, prior medical history with regard to my sickle cell disease, and resources I have in the home. They also offered me support for my mental health and to prevent future vaso-occlusive crises.
One more thing I’d like to add: I’ve been working with my colleagues on delivering collaborative care and taking patients’ pain seriously, especially when it comes to caring for minority patients.
And I want to shout out to my colleague, Randall Knoebel, at the University of Chicago, in particular. We did a podcast together on the disparities in chronic pain treatment in healthcare. He wrote an article entitled, ‘Treatment Disparities Among the Black Population and Their Influence on the Equitable Management of Chronic Pain.’ In his article, he offers some helpful solutions to end treatment disparities experienced by Black patients with chronic, non-malignant pain-related conditions.”
Responses have been condensed and lightly edited.