Diversity, Equity, and Inclusion in the Multiple Sclerosis Community: A Call to Action

While the famous Declaration of Independence phrase “all men are created equal” was perhaps well intentioned when it was written in 1776, we understand in retrospect that the statement actually excluded large portions of the population, notably women, Native Americans, and people of African descent.

Similarly, the concept of quality health care for all is a noble ideal, but in reality it often falls short in meeting the needs of all people. This includes historically underrepresented groups who have been excluded or marginalized because of their race, ethnicity, disability status, sexual orientation, gender identity, socioeconomic origin, or rurality. These individuals often feel disenfranchised and unheard, and they experience poorer health outcomes.¹ When we factor in historic injustice, structural racism, and unconscious bias within the system, some individuals may come to not trust the health care system. In recent years, organizations such as the American Medical Association, the Canadian Medical Association, the Department of Veterans Affairs, and many others have developed statements and policies that confront problems of diversity, equity, and inclusion (DEI) and identify ways to deliver more equitable health care (APPENDIX A, available online at IJMSC.org).

The Consortium of Multiple Sclerosis Centers (CMSC) is committed to confronting DEI issues affecting the multiple sclerosis (MS) community as a whole. The organization seeks to facilitate and inspire a culture of belonging, with the goal of improving MS patient care and the work environment. In August 2022, CMSC’s Executive Committee named a task force of MS care professionals to explore the issue and make recommendations (APPENDIX B). The current report summarizes the task force’s findings and constitutes a call to action for the MS community to recognize and confront existing problems.

POPULATIONS AFFECTED BY HEALTH CARE DISPARITIES

A US government report, Healthy People 2030, defines a health disparity as “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage. Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on their racial or ethnic group; religion; socioeconomic status; gender; age; mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion.”² The basis of health disparities among these groups is summarized in FIGURE 1.²

Basis of Health Disparities Outlined in Healthy People 2030 2

Racial Disparities in MS

Race and ethnicity are social constructs associated with health outcomes. They are dynamic, shaped by geographic, cultural, and sociopolitical forces.³ In communities of color, racism is a primary driver of those social determinants of health.⁴ Numerous examples of disparate health outcomes by race and ethnicity exist that highlight the widespread inequities in health care delivery.^5,6 The reasons behind these disparities are multifactorial. Although there may be some biological differences in disease expression, important causative factors include delays in diagnosis stemming from lack of access to care and differing patterns of treatment among groups.⁶ Lower enrollment in clinical trials among ethnic and racial minority populations compared with White non-Hispanic people can influence risk patterns and treatment recommendations.^7,8 The following are among the racial disparities identified in research:

According to the CDC, non-Hispanic Black people with MS have the highest mortality rate among people younger than 55 years relative to other racial groups with MS.⁹ This may be attributed to factors such as differences in comorbidities, access to care, and MS disease progression.¹⁰

Evidence indicates that Black people with MS experience more severe disease at baseline, including significantly greater frequency of multifocal involvement at initial clinical presentation and higher Expanded Disability Status Scale scores at diagnosis and 5-year follow-up.^11,12

Black people with MS may experience faster clinical progression and poorer clinical outcomes than White people with MS, including shorter median time to needing a cane (16 vs 22 years; P < .0001) or wheelchair (30 vs 38 years; P = .05).¹³

Black people with MS may have a higher risk of certain comorbidities that increase their risk of poorer long-term outcomes from MS.^14,15

MRI and optical CT studies indicate that Black individuals with MS also experience more rapid neurodegeneration (ie, loss of brain and retinal tissue) relative to White people with MS, as well as a significantly higher risk of neuromyelitis optica spectrum disorder.^16–18

Evidence indicates that Black people with MS may have different responses to specific disease-modifying treatments. A lack of understanding of these responses may adversely affect clinical outcomes.¹⁹

Among Hispanic/Latinx populations, MS incidence in the United States appears to be lower relative to other racial/ethnic groups,²⁰ but it is gradually increasing in Puerto Rico.²¹

Latinx persons diagnosed with MS may be more likely than those in other racial/ethnic groups to present initially with optic neuritis or complete transverse myelitis.²²

Vascular comorbidities, such as high blood pressure and smoking, are common among Hispanic/Latinx people with MS and are associated with worse disability. Of those with high blood pressure, only 7% were aware that they had this comorbidity.²³

Evidence shows that Hispanic and Latinx populations have higher disability scores than White persons with MS.²⁴ Worse symptom scores among Latinx people with MS (relative to White and Black people) have been reported, particularly in the domains of pain, cognition, depression, and anxiety.²⁵

Amezcua et al report that social determinants of health—rather than biological factors like genetic variations—are most likely the major drivers of racial and ethnic disparities in MS.²⁶ These include disparities in initial diagnosis and access to care. “Addressing disadvantaged populations requires [that] we engage communities and health care leaders in designing system-level health care interventions and culturally appropriate programs,” the authors recommend.²⁶

There is a dearth of information about MS among indigenous/First Nations persons in the United States and Canada. A Manitoba study showed that the incidence of MS in these populations, while still low, is rising rapidly.²⁷ According to the MS Society of Canada, this increase is coupled with “systemic barriers in receiving needed health care.”²⁸

Sexual Orientation and Gender Identity

Discrimination against lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQ+) individuals has become a prominent focus in health care and in government.

A review of anti-LGBTQ+ discrimination in US health care conducted by Human Rights Watch in 2018 described many forms of discrimination, such as being denied fertility treatment, counseling, routine screening, and even pediatric care for their children.²⁹

A 2020 study by the Center of American Progress surveyed 1528 self-identified LGBTQ+ individuals. Many said they avoided or postponed medical treatment due to a fear of discrimination.³⁰

In the Center of American Progress survey, 1 in 3 respondents who were transgender said they needed to teach providers about transgender individuals in order to receive adequate care.³⁰

Changing government policies at the federal level have profoundly affected access to health care services for trans-gender individuals. This continues to be an actively debated issue that varies along political and geographic lines.³¹

Research on issues affecting LGBTQ+ people with MS has begun to emerge, increasing awareness of these issues and how they affect the delivery of health care.³⁰ One author described being an LGBTQ+ person with MS as “a minority within a minority.”³²

People with MS are often faced with judgment and stigma even when they are cisgender and in heterosexual relationships.³³ They perceive the lack of understanding and ignorance about their condition as discrimination. Studies have established strong associations between high levels of stigma and depression.³⁴

A European survey on disparities stemming from the sexual orientations of people with MS found that those who identified as LGBTQ+ received a lower number of psychological consultations.³⁵ These patients were more likely to leave one MS center for another, and these changes in care were related to how the patient perceived acceptance or homophobic behaviors.³⁵

A survey by the National MS Society and the University of California San Francisco showed overall satisfaction with MS care among people in sexual and gender minority groups³⁶; however, 30% reported feeling uncomfortable discussing their gender and sexual identities with their clinician. The survey authors noted that these individuals face “unique challenges in accessing quality medical care due to structural disparities, social discrimination, and lack of culturally competent health care.”³⁶

Socioeconomic Disparities

Socioeconomic status is linked closely with factors such as race and ethnicity as a source of health care disparities. A KFF report illustrates how these many factors are intertwined (FIGURE 2).¹

Health Disparities Are Driven by Social and Economic Inequities. 1

Health status is linked to income at all levels. People with the lowest incomes are least healthy, and these correlations continue for people at intermediate income levels, with the wealthiest having the best health.³⁷ According to Paula Braveman, MD, MPH, director of the Center for Health Equity at the University of California San Francisco, “Health in the United States is … patterned strongly along both socioeconomic and racial/ethnic lines, suggesting links between hierarchies of social advantage and health.”³⁸

Multiple studies describe associations between socioeconomic status and the risk of disability in individuals with MS.³⁹

Socioeconomic status is inversely correlated with future disability in MS and is likely interrelated with other social determinants of health, including neighborhood, access to health care, and education.³⁸

Employment and economic stability among people with MS

Studies show that between 50% and 75% of people with MS are unemployed within 10 years of diagnosis.⁴⁰ When they remain employed, many people with MS encounter job changes such as reduced work schedules and modified job demands. The person with MS may experience feelings of reduced self-worth, frustration, or depression relating to declining work performance, working less, or feeling like a burden to coworkers.⁴¹

Religious disparities

Religious inequality refers to the way in which individuals and groups experience systemic marginalization, exclusion and, in extreme cases, persecution or genocide on account of their religious beliefs and affiliation.⁴² While data are limited on the effects of religious disparities among people with MS, religion often plays a role in how some people cope with MS.⁴³

Stigma, Racism, and Discrimination

People with MS face inherent stigma related to their condition, especially if their disability requires the use of a cane, brace, wheelchair, or other assistive device.⁴⁴ Symptoms that are less visible, such as fatigue, can also lead to misunderstandings about how MS affects an individual.⁴⁵ Stigma, defined as “a mark of disgrace associated with a particular circumstance, quality, or person,”⁴⁶ is one of the many challenges that people with MS must face at all stages of the disease. It affects all aspects of daily living, including employment, social interaction, partner and family relationships, and body image.^47,48

When a person with MS also belongs to another disenfranchised group, the stigma tends to be multiplied. According to Mark Hatzenbuehler, PhD, John L. Loeb Associate Professor of the Social Sciences at Harvard University, “stigma is a fundamental cause of population health inequalities,” interlinked with race and socioeconomic status.⁴⁹

CONFRONTING CHALLENGES WITHIN THE MS HEALTH CARE WORKFORCE

According to the American Association of Medical Colleges, about 30% of neurology faculty at teaching hospitals in the United States identify as women, 3% as Hispanic or Latinx, 2% as Black or African American, and less than 1% as Native or Indigenous. The CMSC recognizes the importance of expanding workforce diversity in the MS community. The purpose of increasing workforce diversity is not only to meet growing demands, but to confront bias, increase innovation, bring new perspectives, foster belonging, and prevent exclusion. University of Alabama biostatistician Gary Cutter, PhD, has suggested that even if training program admissions for all MS-related health care professions reflected the current proportion of Black people in the United States (13.4% of the population), it would take nearly a quarter-century to achieve a diverse workforce.⁵⁰ The actual racial balance among new trainees is far from this figure. “Creating a balanced and diverse workforce of the future will take much time and concerted effort,” Cutter said in a 2022 CMSC Annual Meeting lecture. “To attract candidates to this specialty, these individuals require exposure and opportunity at younger ages.”⁵⁰

CMSC SURVEY ON DIVERSITY, EQUITY, AND INCLUSION

In September 2022, the CMSC asked its membership and the membership of the International Organization of MS Nurses to complete a survey. Responses were received from 118 individuals. Detailed survey results are available in APPENDIX C.

About half (46%) of those who responded work in hospital or health systems settings. Most respondents (72%) indicated that their organizations already have a policy statement or procedures in place to address disparities in health care delivery. The remainder responded that they were unaware of such a policy (13%), that there is no such policy (5%), or that there may be a policy, but it likely needs updating (8%).

Key Goals Identified by the Survey

CMSC survey respondents were asked to identify the most important goals to achieve if an organization were to adopt a DEI policy. The top answers on a scale of 1 (most important) to 5 (least important) were:

Expanding access to care for marginalized groups (68%)

Reducing ethnic and racial discrimination in how health care services are delivered (56%)

Respecting the patient’s gender identity and providing appropriate care and information for LGBTQ+ individuals (44%)

Addressing Complaints About Discrimination or Insensitivity

The survey asked, “In what ways does your organization address complaints about discrimination or insensitivity in health care delivery?” Respondents could check multiple options. While 67% indicated that their organizations conduct an investigation of the complaint (ie, notification of ombudsperson), 14% said they don’t know how their organization addresses such issues. Half the respondents (50%) suggested that their organization might look into changing policies or practices.

Barriers to Change

When proposing potential changes to be implemented, it is important to identify possible barriers to change that MS care professionals anticipate in their environment. In the CMSC survey, lack of staff time and resources (63%) and lack of awareness (45%) were the top barriers.

Educational Needs Among the MS Professional Community

Respondents to the CMSC survey were also asked about their level of awareness on a personal level. MS care professionals were asked how well informed they are on social and legal issues regarding race/ethnicity/culture or sexual orientation. About half (48%) felt they were well informed and able to discuss or address these issues, while 40% said they were “fairly well informed” but “could use some updating.”

Preferred Types of Education

Respondents were asked what types of education they have personally received in the past 2 to 3 years about disparities or about cultural competency in health care. Most (61%) said they received education within their institution (ie, lecture, meeting, or workshop); 61% also said they had done personal reading or online research.

Level of Interest in Receiving Education

When asked “What is your level of interest in receiving information from the CMSC on providing equitable MS care?” 87% of survey participants indicated a high or moderate level of interest. The preferred formats for receiving this education were:

Webinars or online media: 44%

Live presentations (eg, CMSC Annual Meeting): 17%

Downloadable materials: 14%

Workshops from local speakers: 11%

Panel discussions: 11%

Likelihood of Making Changes

Finally, survey participants were asked to estimate how likely their organization or practice would be to make meaningful changes to expand equitable delivery of MS care using resources available from the CMSC. Sixty-seven percent of respondents said they would be “very likely” or “somewhat likely” to make changes.

ADDRESSING DISPARITIES: FROM TALK TO ACTION

While disparities in health care delivery are being identified and discussed more readily than in the past, effective solutions can be difficult to find and implement.⁵¹ There is a need for “big picture” solutions that are applicable not only across large health care systems, but within specific therapeutic areas and all the way down to the level of the individual practitioner.⁵² The ultimate goal is for sustained changes that equalize the patient experience and health care outcomes. Steps forward must consider both education and action.

Steps Forward Based on the Survey

From the literature and the CMSC survey findings, it is evident that DEI issues are being treated with increasing importance in the MS community, but many recognize that there is still a long road ahead to achieve any significant goals. Given that 85% of the CMSC members surveyed expressed either a high or moderate level of interest in receiving additional education, the task force elected to proceed with the following initiatives to engage with experts on disparities and diversity within the field of MS.

(1) Policy statement

An organizational mission statement was approved by the CMSC Board of Governors in March 2023. The mission statement appears in APPENDIX D. The statement will be reviewed regularly for potential updates as needed.

(2) Dissemination of call to action and other educational information

To raise awareness and underscore its commitment, this call to action will be distributed by the CMSC through its journal and website and at the Annual Meeting and other events.

(3) Educational programs at CMSC meetings and related conferences

In line with the recommendations from the survey, webinars and in-person educational symposia will be offered to the membership at the Annual Meeting and other events.

(4) Industry involvement

Support for educational initiatives on DEI continues to be an active area for diverse stakeholders in the MS community, including industry. The CMSC may elect to work with organizations on such initiatives as appropriate.

(5) Efforts to diversify the neurology workforce

The CMSC will collaborate with interested stakeholders in efforts to diversify the neuroscience workforce of the future.

While any materials or policies developed should reflect the unique aspects of MS care and its community, ideas and inspiration can be drawn from other organizations that are moving forward with similar goals to train and educate health care providers and to correct and prevent unfair policies and practices (APPENDIX E).

PLANNING FOR THE FUTURE

To ensure a more diverse and representative MS workforce in the future, the MS community must proactively advocate for changes in the educational systems that train MS care professionals. Such advocacy steps might include:

Exploring ways to increase recruitment/matriculation and retention of more diverse health care providers and other professionals with respect to race, ethnicity, religion, gender/gender identity, and sexual preference (including expanding access to leadership roles)

Expanding institutional support for setting diversity as a priority

Ensuring diversification within leadership and committees

Expanding strategic support in health disparity research

Expanding strategic support in health disparity training

Adopting more holistic methods for review of applicants, including inclusive interviewing (ie, utilize and train a diverse pool of faculty and trainees; incorporate more structured interviewing)

CONCLUSIONS

Diversity, equity, and inclusion have gained a higher profile in many social and workplace settings, but it is important that any initiatives go beyond “lip service” and translate to actionable items that result in meaningful and sustainable change. There is little doubt that recognizing and addressing past and ongoing disparities will reduce the alienation experienced by certain groups and result in more equitable and effective delivery of MS care for the broadly diverse human population that we serve.

PRACTICE POINTS

Numerous examples of disparate health outcomes by race and ethnicity exist that highlight widespread inequities in health care delivery, including multiple sclerosis care. While the reasons are multifactorial, these disparities often result in diagnostic delays stemming from lack of access to care and differing patterns of treatment among groups.

In a Consortium of Multiple Sclerosis Centers (CMSC) member survey (N = 118), 72% of respondents said their institution has a diversity, equity, and inclusion (DEI) policy in place; many reported that lack of staff time (63%) or lack of awareness (45%) prevent practice change, and most said they have a high (50%) or moderate (35%) level of interest in receiving more education about DEI issues.

The CMSC’s mission statement on DEI acknowledges that in the present system, health care services are not distributed equitably across all races, cultures, and socioeconomic groups. The Board of Governors supports the goal of “putting genuine action behind policies and practices that embrace equity as a core value integrated into all our strategies and missions.”