Letter to NIMHD Director Pérez-Stable regarding health disparity population designation
September 6, 2023
Eliseo J. Pérez-Stable, M.D.
Director
National Institute on Minority Health and Health Disparities
National Institutes of Health
6707 Democracy Boulevard, Suite 800
Bethesda, MD 20892-5465
Re: September 1, 2023 presentation
Dear Dr. Pérez-Stable:
We have had an opportunity to reflect on the National Advisory Council on Minority Health and Health Disparities’ Committee on the Designation of People with Disabilities as a Health Disparity Population (Committee) presentation last Friday of its long-awaited findings and recommendations. The Committee was tasked to examine the inclusion of people with disabilities as a health disparity population under the Minority Health and Health Disparities Research and Education Act of 2000 (MNHDREA),1 in response to our request on December 7, 2021.The Committee’s recommendations are intended to assist you in making a final determination, after consulting with Dr. Valdez, the Director of the Agency for Healthcare Research and Quality (AHRQ), on whether to include all people with disabilities as a health disparity population.
After nine months of deliberations, the Committee’s overarching recommendation was to not now include all people with disabilities as a National Institute of Health (NIH) –designated health disparity population, but rather require further research to establish which populations with disabilities are affected by health disparities. While we respect the Committee’s work and process, we express our dissent with that recommendation and many of the findings leading to it. This letter sets forth our critical evaluation of the Committee’s recommendations, and then calls to your attention an alternative NIH perspective making the case for immediate health disparity designation.
NCD’s Critical Evaluation of the Committee’s Recommendations:
Imposition of Nonexistent Criteria & Needless Call for Additional Research
The Committee cited, in part as bases for its decision, the fact that not all health differences among individuals with disabilities meet the CDC’s definition of a health disparity and the varying “definitions of disabilities.”. In doing so, the Committee imposes nonexistent criteria to the designation; nowhere does the MNHDREA require that 100% of all health differences must qualify as a disparity for a group to be designated. People with disabilities should not be held to a stricter standard than other minority populations, which itself would be a form of disparate treatment. Indeed, if that were a requirement, no minority group would qualify as a health disparity population.
What the MNHDREA requires is your determination of the existence of “a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality or survival rates in the population as compared to the health status of the general population.”2 Such evidence to support inclusion of people with disabilities exists in droves, much of which has been funded by NIH and AHRQ. Respectfully, no additional research is needed to make this determination. The Committee itself noted its discovery of over 1,300 PubMed studies and reports that speak to those disparities. Moreover, the Committee concluded in its key points that people with disabilities have higher prevalence of morbidity and all-cause mortality and experience access and physical barriers to high quality care; and people with disabilities experience stigma, bias and discrimination (i.e., ableism), all findings that support qualification as a health disparity population.
Misinterpretation of the “Definitions of Disability” & Misunderstanding of Disability as a Demographic
The Committee identified as a key gap the existence of what it referred to as several “definitions of disability” and therefore it is not clear who will be the population with health disparities that will be impacted by this designation. To illustrate that, the Committee lists that disability can be related to conditions present at birth and may affect functions later in life; associated with developmental conditions that become apparent during childhood; related to an injury; associated with long standing conditions which can cause a disability; and progressive or intermittent conditions. Respectfully, those are not “definitions of disability” but rather illustrative of the diversity of how disability is acquired.
In addition to misunderstanding the definition of disability, we further believe that the Committee struggled understanding disability as a demographic. As you consider the recommendations provided by the Committee, it is imperative to recognize that key limitation in their analysis and advisement – the absence of an understanding that views disability as a demographic, not merely a medical condition. We believe this fundamental gap in understanding and perspective – as evidenced by the Committee’s concern that it does not know who the designation will cover – significantly influences the Committee’s findings.
When disability is seen solely as a health condition, the focus of discussion, research, and policy often narrows to medical interventions aimed at “curing” or “mitigating” disability. Viewing disability instead as a demographic shifts the paradigm towards recognizing disability as a part of human diversity, similar to ethnicity or nationality, which should be accounted for and included in federal programs and policies, and equally advanced as a demographic in equity initiatives.
The designation of people with disabilities as a protected class under federal nondiscrimination laws like the Rehabilitation Act of 1973, the Americans with Disabilities Act, and in the Patient Protection and Affordability Care Act reinforces this perspective of disability as a demographic. This legal acknowledgment underscores that people with disabilities face systemic barriers and should be afforded the same protections as other minority groups. It serves as compelling evidence that people with disabilities should be recognized not just for their medical needs but as a distinct demographic.
Shortchanging Benefits of the Designation
The Committee’s findings do not adequately consider the extensive benefits that would stem from this designation. While additional disparities research can refresh the overwhelming number of existing studies related to disparities in people with disabilities and could lead to greater inclusion of researchers and people with disabilities as participants in research studies (through loan repayment program for health disparities research), it has many more benefits. Among others, the entire breadth of the MNHDREA’s “health disparities research,”3 inclusive of basic, clinical and behavioral research to treat such disparities; and the designation of centers for excellence for research education and training.4 The ultimate goal is to address and end the disparities, and the designation is of critical assistance to that end.
Overlooked is the access to the AHRQ’s research that comes with this designation, among which includes the identification and evaluation of clinical and organizational strategies and service delivery models to improve the quality, outcomes and access to care for health disparity populations, the testing of such strategies and models and widely disseminating those strategies and models for which there is scientific evidence of effectiveness.5 A critically significant element to help minimize disparities.
Moreover, the Committee overlooked that this designation is necessary and appropriate to further the goal of Executive Order 13985, requiring the Federal Government to address barriers to equity for underserved and marginalized groups, including people with disabilities.6
Unfounded Risks
We were surprised at the Committees’ caution about the potential for “mission creep” and loss of focus at NIMHD, especially given the clear mandates set forth by the MNHDREA. The act explicitly outlines the general purpose of NIMHD as encompassing research, training and information dissemination related to minority health conditions “and other populations with health disparities.”7 Under your leadership, we are confident that far from diluting focus, recognizing people with disabilities as a health disparity population would actually create a purposeful synergy that complements NIMHD’s core mission.
The Committee further identifies as a risk the potential dilution of efforts to train scholars from underrepresented in medicine backgrounds. Foremost, it is crucial to understand that scholars with disabilities are also part of the academic landscape, and their inclusion adds a valuable perspective to research and teaching. Rather than diluting academic scholarship, their participation enriches it, offering new viewpoints that can lead to more comprehensive and inclusive outcomes. The more diverse scholars are represented in medicine, the more robust and multifaceted the research. As we discuss further below, just as people with disabilities often belong to more than one minority group, so do many scholars, encompassing perspectives and experiences from ethnicity, race, and also disability status. The intersectional identities of scholars bring a richness to academic exploration that is immeasurable. When training programs support scholars from a broader range of backgrounds, including those with disabilities, they inherently support intersectional minority scholars, thereby amplifying the diversity of voices in medicine.
The belief that recognizing people with disabilities as a health disparity population would diminish the accountability of other NIH institutions funding disability research is based on a misunderstanding. Specifically, centralizing focus in one area does not exclude contributions from other sectors within NIH; rather, it enhances that by providing a coordinated approach. The designation would offer a focused framework for tackling disability related health disparities without absolving other NIH institutes. In fact, it would encourage more specialized and collaborative research efforts.
Additionally, the designation will not reduce accountability of other federal agencies. As a case in point, consider the work of the Centers for Disease Control and Prevention (CDC) has undertaken to combat racism in public health. Despite racial and ethnic minorities having been identified as a health disparity population by NIH, the CDC still dedicates significant resources to addressing these disparities. Thus, designating another group as a health disparity population does not preclude or diminish ongoing efforts; it amplifies the collective commitment and opportunities to coordinate efforts to resolving such disparities.
The Committee also identifies the potential of a diluted limited budget as a risk to the designation. We are mindful of that concern. However, recognizing people with disabilities as a health disparity population could lead to additional funding targeted to support the work of the NIMHD given this new designation. Were you to announce the health disparity designation for people with disabilities, NCD, in furtherance of our federal advisory role, commits to further advising congressional committees of jurisdiction of the need for greater funding during the appropriations cycle.
Finally, the Committee’s concern that the designation could potentially divert attention from establishing a specialized office or institute for disability research presents a false dichotomy. The two are not mutually exclusive; in fact, they could function synergistically to address the unique health challenges facing individuals with disabilities.
By formally recognizing people with disabilities as a health disparity population, NIMHD would establish a robust framework that necessitates focused attention and resources to this group, which in turn, would serve as a strong foundation upon which an office or institute focused on disability research could be built. Additionally, this designation could actually amplify the need for a specialized office or institute by highlighting the specific and complex health disparities that people with disabilities face.
The Committee’s Additional Recommendations Fall Short
The Committee’s recommendation to establish an Office of Disability Research within NIH to coordinate NIH disabilities research and establishing a budget for research on disparities experienced by people with disabilities is commendable, but it falls short of the transformative change that is needed to genuinely address and seek to eliminate the health disparities experienced by people with disabilities. While coordination of research is an important action, it does not inherently align with a mission to reduce health disparities. It lacks the specific focus and dedicated resources that come with a health disparity designation, a status that mandates a concentrated and sustained effort to rectify existing inequalities.
NCD believes that creating an Office of Disability Research without a health disparity population designation could inadvertently perpetuate the very health disparities that it aims to investigate. Specifically:
- Missed Synergies. By not designating people with disabilities as a health disparity population, NIH would miss the chance to create synergies between different types of research and public health efforts aimed at reducing disparities. However, a health disparity designation would allow such an Office of Disability Research to work in collaboration with other groups focused on disparities, enabling a more comprehensive approach.
- Insufficient Policy Influence. An Office of Disability Research without the backing of a health disparity designation is likely to have limited influence when it comes to shaping public health policy. A designation brings with it an increased sense of urgency and priority at both the federal and state levels.
- Fragmented Funding. While an Office of Disability Research may centralize research efforts, it does not necessarily secure targeted funding to address health disparities in the disabled population. A health disparity designation would unlock specific grants and funding streams aimed at reducing disparities, providing the resources needed for impactful research.
- Reduced Accountability. Without a health disparity designation, there is less obligation for NIH or any other federal agency to consistently monitor and report on progress regarding health outcomes in the disabled community. Regular reporting would ensure accountability and ongoing commitment.
- Public Awareness. A health disparity designation would signal to the broader medical community and the public that health disparities among people with disabilities are a priority public health issue, deserving immediate action. Without it, these disparities will continue to be sidelined or diluted in the broader healthcare dialogue.
NCD believes that while an Office of Disability Research is a step in the right direction, it is not a substitute for recognizing people with disabilities as a health disparity population. To do so would be to miss a critical opportunity for meaningful, lasting change in reducing health disparities in this underserved community.
The Committee further recommends incorporating now a greater emphasis on the intersection of disability and existing populations with health disparities. We agree, but not in isolation. We point out that there is significant research existing already that examines this intersectionality. As Kennedy and Swenor point out in their March 2023 Commentary published in the Disability and Health Journal8:
Most Americans with disabilities are already members of one or more currently designated US health disparity populations. An analysis of pre-pandemic (2019) data from the Adult National Health Interview Survey (NHIS) shows that approximately 13.2
million adults with disabilities are Hispanic/Latino, Black/African American, Asian American, American Indian/Alaska Native, homosexual, bisexual, low income, and/or residing in a rural community (unfortunately, the NHIS does not yet include questions on gender identity). An additional 9.4 million adults with disabilities are not part of any designated health disparity populations. Adding this group [to the designation of a health disparity population] would therefore increase the total number of adults who are considered members of one or more health disparity populations from about 117.9 million to 127.3 million (roughly an 8% increase). Of course, any prevalence estimates are a function of the survey design and study sample.
And to our previous point of the Committee imputing nonexistent criteria as a condition for designating people with disabilities as a health disparity population, Kennedy and Swenor point out there are frequent and occasionally heated debates over how to best measure disability, but similar debates exist for all other minority groups in public health research, and the NIMHD has wisely refrained from operationally defining inclusion criteria for any designated US health disparity population.9 As stated, we urge refrain here as well.
Glaring Lack of Representation
The glaring absence of researchers with disabilities or those well-versed in disability issues from the Committee, despite there being a considerable number of researchers with disabilities available for such appointment, constitutes nothing short of a profound disservice to you and a significant obstacle to adequately advise you on the pressing issue of the designation of people with disabilities as a health disparity population. It is evident in the Committee’s conflation of the various ways a person can acquire a disability for multiple “definitions” of disability, and in its failure to comprehend disability as a demographic. This absence does more than just skew perspectives; it compromises their efficacy and accuracy. We raised these concerns promptly with you when the Committee was formed and also directly to the Committee when we had the opportunity to brief it as it began its deliberations. It was noteworthy to us that this very issue was raised by an Advisory Council member at last Friday’s briefing.
NCD, as independent federal advisors, we also rely upon the expertise of others to inform our work and recommendations, and throughout our efforts to advance our Framework to End Health Disparities of People with Disabilities, we have relied upon the insights of a multi-disciplinary team of experts, inclusive of researchers, physicians, and lawyers, many of whom have disabilities. Many have also secured multiple NIH related funding to investigate these disparities and are highly qualified to contribute to the Committee’s mission. It was this group of fourteen, in fact, who strongly advised of the importance of prioritizing the health disparities designation as foundational in eliminating health disparities experienced by people with disabilities.
Consideration of Alternative NIH Perspectives: The Case for Immediate Designation
Having articulated our concerns about the limitations and shortcomings of the Committee’s recommendations, we now turn your attention to another valuable perspective within NIH itself. A separate study conducted by another NIH committee - the Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities (Subgroup) – in its report published on December 1, 2022.10 A copy of that report is attached hereto as Exhibit A.
The Subgroup is an ad hoc group of subject matter experts who were originally recruited to systemically identify: strategies to enhance data collection focused on individuals with disabilities in the scientific workforce; current data and trends on prevalence of individuals with disabilities in scientific workforce at various career stages; evidence-based practices for supporting individuals with disabilities, accounting for variation in disability types; programs with demonstrated success in supporting individuals with disabilities; and perspectives of individuals with disabilities.11
As stated in its report, the Subgroup quickly noted that in order to effectively address its charge, it needed to expand its focus to include research on addressing the health and health care disparities affecting people with disabilities and increasing the inclusion of people with disabilities and research studies.12 After a year of intensive deliberations, the Subgroup developed a set of suggestions for consideration. Among them include unambiguously, “Formally Designating People with Disabilities as a Health Disparity Population.”13
In support of that recommendation, the Subgroup appends a nonexhaustive list of studies funded by the NIH and AHRQ relating to health and health care disparities for people with disabilities, including research from many of the various NIH institutes, centers and offices.14 Research unequivocally evidencing disparities in the areas of screening and preventative services; cancer; comorbid health conditions and health risks factors, including obesity; pregnancy and reproductive health; satisfaction with care and communication with clinicians; financial access to care; rural residents with disabilities; barriers to care; failure to accommodate disability; and ablest attitudes.15
The Subgroup noted in its report awareness of the NIMHD’s undertaking to consider this designation, expressing its support. It is unclear whether the Committee was or is aware of the Subgroup’s report, and if it was aware what weight it gave to its findings and recommendations in support of the designation. To that end, it would be helpful for the Committee’s report to be made publicly available once complete, and inclusive of what methods, sources, and processes were used in reaching its conclusions and recommendations. What is clear to NCD is the stark difference in the composition of the two working groups: the Committee with no disability representation and the Subgroup with disability representation, openly relying upon many of its members’ lived experiences to inform its findings.
As you deliberate on designating people with disabilities as a health disparity population, NCD respectfully urges you, Dr. Pérez-Stable, to give substantial weight to the findings and recommendations of the Subgroup as its perspectives are informed, in part, by professionals with disabilities and with a disability lens.
The designation of people with disabilities as a health disparity population under the MNHDREA serves as a critical and overdue acknowledgment from the Federal Government of the significant and pervasive health disparities affecting this population. The absence of such a designation effectively hampers the commitment and focused needed to advance targeted research, interventions and policies aimed at reducing these disparities. By formalizing the classification, the NIH is empowered to channel its considerable resources and intellectual capital toward the rigorous, systemic investigation of these disparities, with the ultimate goal to develop concrete strategies for their elimination.
As always, we are available to further advise and assist you in these final deliberations. And we encourage you, in light of the weight of evidence in support of designation, to announce people with disabilities as a health disparity population as a critical step, consistent with your office’s mission, to help eliminate the staggering health disparities faced by people with disabilities each day across the nation and in our territories. Failure to proceed with the designation is a dereliction of ethical and public health responsibilities.
Respectfully,
Andrés J. Gallegos, JD
Chairman
Cc:// Xavier Becerra, Secretary, U.S. Department of Health and Human Services
Lawrence Taback, Director, National Institutes of Health
Robert Valdez, Director, Agency for Healthcare Research and Quality
Alison Barkoff, Principal Deputy Administrator, Administration for Community Living
Sam Bagenstos, General Counsel, U.S. Department of Health and Human Services
1 P.L. 106-525.
2 42 U.S.C. § 285t(d)(1).
3 42 U.S.C. § 285t(d)(3), which includes basic, clinical and behavioral research on health disparity population (including individual members and communities of such populations), that relate to health disparities including the causes of such disparities, and methods to prevent, diagnose and treat such disparities.
4 42 U.S.C. § 285t-1.
5 42 U.S.C. § 299a-1(b)(2)
6 Executive Order On Advancing Racial Equity and Support for Underserved Communities Through the Federal Government. January 20, 2021. https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/20/executive-order-advancing-racial-equity-and-support-for-underserved-communities-through-the-federal-government/
7 42 U.S.C. § 285t(a)
8 Jae Kennedy, Bonnielin Swenor, It’s time for the NIH to formally designate people with disabilities as a US health disparity population, Disability and Health Journal, Volume 16, Issue 3, 2023, 101468, ISSN 1936-6574, https://doi.org/10.1016/j.dhjo.2023.101468. (https://www.sciencedirect.com/science/article/pii/S1936657423000353)
9 Id., at 3., citing, Mitra M, Long-Bellil L, Moura I, Miles A, Kaye HS. Advancing health equity and reducing health disparities for people with disabilities in the United States. Health Aff. 2022;41(10):1379e1386. https://doi.org/10.1377/hlthaff.2022.00499, 2022/10/01; and Hall JP, Kurth NK, Ipsen C, Myers A, Goddard K. Comparing measures of functional difficulty with self-identified disability: implications for health policy: study compares measures of functional difficulty with self-identified disability. Health Aff. 2022;41(10):1433e1441.
10 ACD Working Group on Diversity. Recommendations of the Subgroup on Individuals
with Disabilities; 2022. December 1. https://www.acd.od.nih.gov/documents/presentations/12092022_WGD_Disabili….
11 Id., at 9.
12 Id., at 10.
13 Id., at 22.
14 Id., at Appendix C, citing, e.g., the National Center for Medical Rehabilitation Research at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Alongside research funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR); the Centers for Disease Control and Prevention (CDC); the Health Resources and Services Administration (HRSA); the Assistant Secretary for Planning and Evaluation (ASPE) in the United States Department of Health and Human Services (HHS); the Patient-Centered Outcomes Research Institute (PCORI); and other federal agencies, nonprofits, and private philanthropies.
15 Id., at 38.