46 Experiences of a Caribbean immigrant: going beyond clinical care

Akesha E. Edwards, PharmD, PhD

Introduction

Racism is a multidimensional construct that infiltrates every aspect of life in the United States.¹ Its basic principles involve the subordination and discrimination of one racial group by another, with race used to determine superiority. The origins, history and evolution of the United States is rooted in racism, which presents as the favored group (white persons) acquiring and having access to more resources and power.

The United States is founded on a harsh and violent history, including the stealing of Native American land, followed by centuries of oppression of Africans through their labor on this stolen land.² These are only a few of the events which are the source of the debates surrounding the phrase “all men are created equal,” found within the US Declaration of Independence. Since its adoption in 1776, there has been much debate about the meaning of ‘all men.’ The simplest of arguments infer that this equality excludes women, African Americans, indigenous people, and other persons of color. Since this time, American history has demonstrated that not all men are created equal, with a preference for white persons while all others have been traditionally oppressed. This oppression is still present today throughout all institutions and is considered the most complex form of racism, systemic racism.^1,2 This level of racism is evidenced by systems which favor the majority and dominant white culture. Persons belonging to the majority hold the power, and thus can create the regulations, policies and procedures governing all of society’s institutions, which are reflective of their beliefs and biases. Freedom and equality are not enjoyed by all, and despite hundreds of years of US evolution, this inequality for certain groups has remained.

One major example of systemic racism is depicted by the practice of redlining by mortgage lenders. Pursuant to the Great Depression, several federal policies were put in place in the 1930s in an attempt to ‘right’ the housing market by preventing foreclosures and assisting with housing for those who lost their homes.³ The Home Owners Loan Corporation was created for this, controlling mortgage risk by implementing a system of property appraisals. Neighborhoods were graded on attributes such as area quality and population composition. As a result, neighborhoods with all forms of minority populations were graded lower than others, and these grades were used by financial institutions to determine loan eligibility. This led to the systematic denial of loans to persons of color. Despite the illegality of redlining today, it has majorly contributed to the long-term disenfranchisement of historically poorly graded neighborhoods.

Education is another sector of society where outcomes are significantly impacted by systemic racism. Persons of color experience many barriers that impede their success in their pursuit of education. From as early as kindergarten, Black students have a higher likelihood of suspension in comparison to white students.^4,5 This is thought to be because of the trend of suspicion of guilt (e.g., darker skin tone is associated with perceptions of evil) which Black persons face throughout all aspects of their lives.⁶ On a more pervasive level, schools enrolled with mainly students of color are typically underfunded and have less resources.⁷ Access to less resources also leads to students in these groups having to take on more debt when pursuing higher levels of education. All these barriers and more work together to result in lower graduation rates for students of color at all levels in comparison to white students.

The effects of systemic racism are also experienced in healthcare. One of these effects is the presentation of health disparities, which are more than differences in health status when comparing one group to another. A disparity is a direct result of a social disadvantage, with resulting differences in health status that could have been prevented, and therefore, are unjust.⁸ For instance, lack of appropriate training of healthcare professionals fails to prepare them to adequately assess and manage occurrences of pain reported by Black patients. This leads to Black patients with similar conditions as white patients being less likely to receive pain medications.^9,10 Furthermore, common stereotypes still persist, such as Black patients having thicker skin and nerve endings, giving them higher pain thresholds.¹¹ Cultural competency training to promote life-long cultural humility is not mandatory for most healthcare professions programs. As a result, providers are not equipped or able to interact with patients belonging to under-represented groups in a culturally sensitive manner. This in turn leads to patients not trusting their healthcare professionals, which then leads to non-adherence to their respective therapy.^12,13

As one of the most trusted professions, pharmacists have a duty to include strategies while caring for patients which may help lessen the impact of systemic racism and the resulting health disparities. They should be part of the solution as opposed to contributing to the problem. Consider that lack of cultural competence, as well as implicit and explicit biases in providers, help perpetuate systemic racism. It is up to pharmacists to work together with other healthcare professionals to make experiences within the healthcare system for patients of color, in the very least, survivable.

Case

CC: “I’m here for a follow-up with my caseworker and to sort out my medication.”

Patient: JS is a 70-year-old female immigrant (65 in, 68 kg) from the Caribbean.

HPI: She contracted HIV from her (now deceased) husband of 45 years. According to JS, she was first diagnosed with HIV in her home country in her early thirties but only started antiretroviral therapy when she became a US resident. JS initially sought therapy for her condition when her husband became gravely ill one year prior to his death.

PMH: HIV; osteoarthritis; hypercholesterolemia

FH:

• Husband: (deceased, AIDS); T2DM, dyslipidemia
• Mother: (deceased, breast cancer); T1DM
• Father: alive; T2DM, arthritis, hypercholesterolemia
• Son: alive
• Daughter: alive; asthma

SH: No alcohol, tobacco, or illicit drug use

ROS: JS reports no major change since her last visit six months ago. The only complaint she has is that her joints are “extra stiff” now with the colder weather. She reports that she remembers to take her HIV medication as scheduled because she knows how important it is.

Vitals:

• BP 110/70 mmHg
• HR 70 bpm
• RR 18/min
• Temp 97.9°F

Medications:

• Atorvastatin 10 mg once daily
• Dovato 1 tablet once daily
• Acetaminophen 650 mg every 4-6 hours PRN pain

Additional context: While catching up with JS, you learn that she is transferring herself out of the health system where you manage her. She mentions that she has finally found an HIV specialist who is from the same island that she is from. The new HIV specialist is farther from where she lives, but she is willing to commute the additional 45 minutes. JS states that she is only presenting to your clinic today to see the Caribbean case worker, and because she would like you to transfer her cholesterol medications to her new pharmacy.

You decide to have a deeper conversation with JS since this may be the last time you have the opportunity. At your clinic, patients with HIV usually have their follow-up visits scheduled for every two to three months. However, JS has been classified as a patient who is non-compliant with regards to clinic visits. This non-compliance has led to JS having challenges adhering to her antiretroviral therapy. Through your conversation with JS, you learn that she has always been uncomfortable accessing healthcare in your health system. Her mother, who died of breast cancer 10 years ago, visited one of the oncologists here. In her opinion, her mother’s pain and discomfort were never managed appropriately. According to JS, the oncologist rebuked her mother for seeking alternative means of pain management. She also watched as her mother agonized and begged for more pain relief in her final days. These pleas were largely ignored.

JS also shares that both of her daughters had pregnancies that were “touch and go.” She continues to tell you that for her eldest daughter’s first child, the OB-GYN was not very knowledgeable of and sensitive towards their cultural background. Their breakdown in communication led to many delivery complications, which almost resulted in her daughter’s death. As a result, her daughter sought out an OB-GYN from the Caribbean for her second pregnancy, which had a more favorable delivery. To end your conversation, JS remarks, “Besides most people here don’t look and sound like me.”

Case Questions

1. What specific experiences did JS and her family have that contributed to them seeking only providers who shared their cultural background?

2. JS’ daughter experienced complications during her first pregnancy that were near fatal. Which groups of women in the United States have the highest rates of maternal morbidity and mortality?

3. How does systemic racism frame the experiences of this patient and her family?

4. How has systemic racism contributed to the health disparities experienced by JS?

5. How can pharmacists provide care to patients with a background like JS?

6. Within the normal scope of transitioning care, what are some highlights worth mentioning to JS’ new HIV healthcare team?

7. How can pharmacists help decrease the occurrence of systemic racism in our healthcare system?

Author Commentary

One of the most important takeaways about systemic racism is that it is pervasive throughout all institutions. For this type of racism to still be having an impact on certain groups of patients over so many centuries, means that it is actively being maintained and supported, most often by the complicity of those who benefit from it. For professionals within healthcare, we can simplify the definition of systemic racism by looking at its impact on our patients. It is important to acknowledge that there is a basic mechanism of action at play here, where one group has access to all levels of power, using their status as leverage and to disadvantage other groups with little to no power. Over time, the face of systemic racism may change but its goal of maintaining power and advantage over one group never does.

The presentation of health disparities, which affect specific patient groups, is only one of the adverse effects of systemic racism in healthcare. Pharmacists, along with other healthcare professionals, must act together to champion systemic change. Therefore, it is essential to recognize that systemic racism is a public health issue, acknowledge that healthcare disparities exist, and understand the role that implicit and explicit bias and cultural competence plays when being an advocate for patients.

Patient Approaches and Opportunities

Individuals who do not identify as a person of a color must become allies (someone who belongs to the majority but is willing to use their privilege and power to fight alongside persons belonging to the disadvantaged groups, and support actions of change). To achieve this, one of the first things that must occur is listening and realizing the truth in what you are being told. Even if one does not engage in individual racist acts, there are advantages and privileges throughout society and different institutions that they receive as a member of the majority.

Allyship has a place in patient interactions as well. Pharmacists can enact change by becoming an advocate. Trust is important for patients of color and a basic essential of any successful relationship (professional or personal). Accordingly, pharmacists should strive to become a long-term partner of their patients by gaining their trust and getting to know them on a holistic level. For instance, when considering the SDH/SDOH alone, one must acknowledge that there are many layers of factors at play when a patient pursues healthcare that may in turn affect their health outcomes. Understanding and being empathetic towards the different barriers a patient may be experiencing in their healthcare pursuit is likely one of the simplest actions that can be taken as a pharmacist to start effecting change in our healthcare system.