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Health Disparities Planning Panel on NeuroAIDS in Minority Populations


 

National Institute of Neurological Disorders and Stroke
Health Disparities Planning Panel on
NeuroAIDS in Minority Populations:
Meeting Report
July 16, 2001

 

Introduction

The ongoing planning activities for the National Institute of Neurological and Stroke (NINDS) Health Disparities agenda will establish the research priorities, objectives and strategies we will employ to reduce the burden of neurological disease in minority populations. This report summarizes the results of a planning panel on the neurological complications of HIV/AIDS in minority populations held on July 16, 2001.

HIV infection/AIDS is a leading cause of death for young adults in the United States, with approximately 375,000 people having died from the disease. Moreover, an estimated 650,000 to 900,000 Americans have been infected with HIV, 15%-30% of whom will develop some type of neurological disorder in the course of their illness. Data taken from the Centers from Disease Control (CDC) in 1999 clearly demonstrate that though only 30% of the country's population is made up of racial/ethnic minorities, this population accounts for 68% of the number of AIDS cases reported. Not only are there a disproportionate number of AIDS cases in minority populations, but also this number has increased over the past 10 years, while the number of cases in the Caucasian population has decreased within the same time frame.

In fiscal year 2000, the NINDS allocated $28 million to NeuroAIDS extramural research. Specific research areas that are currently funded by NINDS include: the central nervous system (CNS) as a viral reservoir; HIV trafficking in the CNS; the role of the blood brain barrier in NeuroAIDS; mechanisms of HIV dementia; neurotoxicity; opportunistic infections; identification of biomarkers and improving imaging techniques; vaccine and therapeutic development; research on animal models such as Simian Immunodeficiency Virus (SIV) and Severe Combined Immunodeficiency (SCID) mice; as well as Clinical trials. At present, NINDS policies and programs for reducing health disparities include a human subjects inclusion policy to ensure that all studies involving human subjects include racial/ethnic minorities in the proportion by which they are affected by the disease; minority recruitment requirements for training grants to improve minority participation in the research workforce; and two requests for applications (RFAs) for Specialized Neuroscience Research Programs (SNRPs), one focused on basic neuroscience and the other on HIV and the nervous system, to develop research capacity at predominantly minority institutions. One of the tasks for the national workshop will be to identify what additional policies and programs can be implemented to address the issue of health disparities with respect to the neurological complications of HIV/AIDS. The charge for the planning panel was to set priorities for NeuroAIDS research in minority populations.

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Discussion and Recommendations

Research: NeuroAIDS in Minority Cohorts

In reviewing the literature about the health disparity specifically related to the neurological manifestations of HIV/AIDS, it became clear that there is a paucity of research data on neurological outcomes. The panel cited two relevant studies. One study examined the disease process in African American drug abusers and did not find substantive differences between this population and any other population; however, more is known about cofactors now than when the study was conducted. A new study at the University of Puerto Rico, will be following a group of Hispanic subjects, primarily women, for AIDS-related dementia. Overall, however, research in this area has been relatively unexplored. Research results regarding disease progression should be available. Natural history and epidemiology have been broken out for evaluation and could provide a snapshot of what minority needs may be. There are a number of cohorts from which one could obtain some data, but a number of questions are raised by this approach, such as how the adequacy of diagnosis is determined. Another difficulty pertaining to this data is that it typically focuses on African Americans and Hispanic Americans, excluding other minority groups that are affected by the disease in very particular ways. In addition, diversity within populations is a significant factor. It is important to create studies to identify specific populations within the overall NeuroAIDS population.

Other more basic issues might be related to disease course among different ethnic groups. It was noted that issues of socioeconomic diversity are very complicated and cannot be outlined easily. This raises the question of how to assist institutions that typically treat these patients in addressing the issue of disparity to create one level of quality for a wide and varied patient base. Yet another question is whether disparities really exist. What is the role of genetics? Biological differences are known to exist; in India, for example, HIV-associated dementia is rare. Additionally, many drugs behave differently in the Asian population; genetics may have an impact on how the disease progresses and how it is treated.

Additional concerns: (1) the effect of NeuroAIDS in women, especially African American women, was an area of serious concern. In addition, many minority women with AIDS are non-English-speaking, poorly insured, and have little access to adequate care. Their children also are deeply affected by the disease. A central question is whether the higher incidence of dementia among minority women is a minority or gender issue. (2) Increasing numbers of Native Americans are getting AIDS (primarily as a result of drug abuse), and the Southeast Asian and Pacific Islander communities also have been affected but are rarely included in these studies. (3) Most of the screening and assessment tools are normed to the majority population. Individuals who speak Spanish, for example, often are unable to complete these tests and may appear to suffer from dementia when in fact they do not. Thus, the development of culturally appropriate tools is an essential step. (4) Poverty and lack of education are central problems of minority populations in need of care for NeuroAIDS. (5) Getting an accurate number of diagnosed HIV/AIDS cases within minority populations is also a concern. Many people do not tell their families that they are HIV-positive because of the stigma associated with the disease. Alternative methods of identifying hidden populations, such as looking at medical records through collaborative efforts, must be developed.

Dr. Price summarized by noting that there may be data available that are relevant but must be further refined, and new instruments must be developed to examine these data if new information about exposure and susceptibility to disease, different types of treatment, and effective approaches within each population are to be discovered. But there are a number of barriers to this research, including language, the unwillingness of some researchers to conduct community outreach efforts, and the inaccessibility of research institutions to study participants. One possibility raised was the AIDS patient population housed in correctional institutions who may not have access to a neurologist and, therefore, do not receive comprehensive neurological care. Making these services available would provide an opportunity to document a great deal of AIDS-related neurological disease, as well as provide an important service to this community.

Other areas of discussion mentioned by participants included:

  • Are the neurological complications of HIV/AIDS more prevalent in minority populations? Which disorders?
  • Is there a role for genetic differences, co-infections, pharmacological differences, and differences in rates of conversion to NeuroAIDS related to different ethnicities?
    • Can these be targeted for prevention/interventions?
    • Investigations with global HIV in homogeneous populations may aid in the search for biological differences.
  • Are there drug disposition differences in various populations?
    • Multi-drug resistance and drug metabolism (NIDA research indicates that there may be isoforms unique to these ethnic populations)
  • Co-morbidity with other diseases prevalent in minority populations (i.e. diabetes, hypertension, head injury, epilepsy, etc.) and drug interactions between treatments for these diseases and AIDS therapies should be examined.
  • Neurological assessments for minority populations (relating to SES, education, language, etc.) need to be improved.
  • Improvement of biological markers so there is less of a need to rely on subjective assessments.
    • Improvement of non-invasive tests - MRS imaging - tight correlation with neurocognitive state but has not yet been used in minority populations
  • Improvement of chronic pain management in minority populations, women and substance abusers
  • Improved diagnosis of neurological disorders in minority patients with HIV/AIDS.
  • Investigations into the causes of differences in compliance.
  • Cultural attitudes towards illness and healing should be incorporated into research approaches.

Health Disparities Research: Capacity Building

Finding ways for minority institutions to link not only with Government agencies but also with research institutions is critical to addressing the disparities in health care experienced by minorities in the area of NeuroAIDS research. The only way to develop adequate research capabilities is by linking with a wide range of cooperative ventures or by developing new ones. One way to do this is through shared cohort studies; another is through requiring the participation of minority individuals or institutions as subcontractors on grants. Such an effort must be ongoing as well as strategic to ensure that new researchers do not come into an institution, gain the information needed, and then leave the institution without the resources necessary to help their community. In this particular field, many minority researchers want to return to their communities to work as clinicians once they have completed their education. All the technology (such as the Internet) that can be brought to bear on bringing young minority scientists into research careers should be used.

Mentoring is also a critical tool that will help retain many minority scientists in the research arena. The Specialized Neuroscience Research Programs (SNRPs) funded through NINDS pair up young researchers with established researchers. However, without adequate support and the technological resources necessary to do cutting-edge research, the possibility that these investigators are likely to leave the minority institution for a research intensive institution is strong. This problem is endemic to research as a whole: young researchers tend to feel that they are being asked to do all the "dirty work" without getting any of the credit, which diminishes their commitment to the research. The identification and/or development of appropriate funding and administrative models are essential to keep this from happening.

Another approach would be to open the door for clinical trials to institutions that are not primarily research institutions. Such an endeavor would require significant infrastructure support from NIH and would probably take years to begin operating effectively. An alternative approach would be to establish collaborative partnerships not just with researchers but also with administrative staff. Collaborating institutions could offer training and career opportunities within local minority communities. Teaming with other institutions to share technology or to learn how to use new technologies also would be an important step forward for research institutions. Using established models, such as "train the trainer," would increase incrementally the knowledge base. With these numerous layers of collaboration, the effects on minority communities might be seen relatively quickly. In addition, minority researchers would be more likely to become committed to becoming leaders in their fields.

Other suggested routes to encouraging young investigators included:

  • Inclusion of minority institutions/hospitals in programs like NARC (multi-institutional); brain bank programs
    • Perhaps by supplementing budgets on parent grants when minority institutions are added;
    • Sending NARC investigators to establish NeuroAIDS teams at community hospitals using competitive supplements
  • Infrastructure support to provide cutting edge resources to allow minority institutions to design experiments relating to health disparity research (i.e. MRI, MRS, etc.)
    • Mini-sabbaticals to train in the use of these technologies and build set-up for new institution
  • Website of minority institutions that are doing health-related research
  • Establishment of a fair and realistic mechanism for oversight that will ensure that young researchers are protected and monitored;
  • Student loan repayment programs;
  • Recruiting minorities into medical specialties as opposed to primary care
    • Increasing the number of minority physicians in research residencies;
    • Summer research programs for minority medical students
  • An improvement in how neurobiology is taught in medical schools and elsewhere, and perhaps the development of a nationwide curricula;
  • NINDS funded sabbaticals for minority investigators (senior fellowship)
  • Identification of promising high-school students to receive job and educational support;
  • Target state universities, community colleges to recruit minorities into science
  • Curricula for training programs - improve infectious disease training for neurologists and neurology training for virologists
  • Nominate students from minority institutions for leadership forums at NIH - identify disease areas that are relevant to the communities
  • NARC leaders as mentors to minority scholars

Public Information and Community Outreach: Information Development and Dissemination

A fundamental question pertaining to this issue is whether there is enough information in the scientific literature on NeuroAIDS to justify the development of a dissemination plan. If so, this information must be reformatted to ensure that it is culturally appropriate, not only to targeted minority communities but to women, specific age groups, and others. The general public does not really know what NeuroAIDS "looks like." Furthermore, many people are confused by the variations between HIV, AIDS, and NeuroAIDS. The information must be presented so that it is understandable to the lay public. Information that has been disseminated in the past has tended to be aimed at those who are already generally informed. Rather than targeting an amorphous "general public" for an information dissemination effort, it was proposed that targeting those who are in direct contact with the minority public is likely to be a more practical approach. Involving the faith-based community in addition to community leaders, patient advocates, mid-level practitioners, and others who interact on a daily basis with members of the target communities is critical in this regard. The question arose of how to get information to various faith-based organizations and of how to convey the message of the importance of research. Although many Web-based resources are available, many members of these communities do not have access to the Internet and would not therefore be able to access these resources. Thus, information has to be channeled through effective sources or delivered via face-to-face contact. A "multidimensional approach is essential."

The question of institution vs. individual also arose. Talking about funding in general terms is not sufficient. Building trust and establishing relationships that will make that funding useful requires human contact. For example, monthly community forums may help to generate public support for controversial research. Opinion leaders, local government officials, the media, and outside experts all may be invited to participate in these forums so the public can attach faces to the work. Establishing relationships with community leaders is essential to making this effort work. Some mechanism for reward or recognition for participation in community outreach should be in place to serve as an incentive. Perhaps the CDC's Racial and Ethnic Approaches to Community Health (REACH) program could serve as a model. The role of community-based organizations in research is an important one as well. Much of the care needed by NeuroAIDS patients can be provided by community-based organizations, which the public is likely to trust more than government-supported researchers. Their representatives can not only educate patients about NeuroAIDS, but also can serve as an important link between the patient and research.

Additional recommendations included:

  • Providing information regarding the neurological complications present in minority populations
    • Integrate NeuroAIDS education with community outreach that already exists within the HIV/AIDS community
  • Partnerships with CBOs and FBOs
    • Conducting workshops for community and religious leaders for their education
  • Educating health care providers about the neurological complications of HIV/AIDS
  • Education of other AIDS researchers to the importance of neurological complications.
  • Educating patient advocates, caregivers, hospice workers, and patients so they can seek out care.
  • Encouraging data gathering by neurologists
  • Transferring of technology from researcher to provider - workgroups, lectures, seminars
  • Web-based, television and radio information dissemination - including providing CBOs with computer networks
  • Reward system for physicians working with CBOs
  • Community advisory boards to clinical research

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Priorities for Workshop from July, 2001 Planning Session

The NeuroAIDS Planning Committee focused on three areas: Research on Health Disparities in NeuroAIDS, Capacity Building in Health Disparities Research, and Public Information and Community Outreach. From the ensuing discussions, it became clear there was a lack of comprehensive understanding of the natural history/clinical course of neurological complications of AIDS, especially among minority populations. As this understanding is essential to identifying points of intervention and effective interventions for those points, research and research capacity building must receive the highest priority for further development. Accordingly, the following priorities are suggested:

Research on NeuroAIDS. The research agenda for NeuroAIDS must emphasize points of prevention and intervention so that the reduction and, ultimately, the elimination of disparities may be achieved. The following research priorities are targeted for the broad array of racial/ethnic populations within the United States.

  1. Natural History/Clinical Course of NeuroAIDS including:
    1. Incidence and prevalence of the array of neurological manifestations, and associated risk factors
    2. Disease progression (or conversely, disease stabilization) and associated risk factors, e.g., genetics, co-infections
    3. Treatment issues: array of therapies, adherence to recommended therapies, and response to therapies
  2. Screening and assessment tools for identifying neurological complications of AIDS within racial/ethnic groups (i.e., norming instruments to specific populations)
  3. Identification of alternative means of identifying neurological sequelae of AIDS (vis-à-vis neuropsychological testing), e.g., MRI
Research Capacity Building. The overall objective in this arena is to expand and retain the cadre of research scientists, especially those from minority groups, who will carryout a long-term research agenda in NeuroAIDS. Priorities in this area are as follows:
  1. Create Collaborative Partnerships between high-caliber Research Institutes and non-traditional Research Institutes to train and support researchers from minority groups to conduct community-based research in NeuroAIDS.
  2. Create programs to expand and retain NeuroAIDS researchers, especially minorities (e.g., minority institution-based Research Networks of Community Medical Practices with the objectives of involving clinical researchers (former trainees of the particular institute) in NeuroAIDS research and conducting community-based research).

Public Information and Community Outreach. Reduction and elimination of health disparities in NeuroAIDS will require effective dissemination of research discoveries into clinical practices that target minority populations and improved public awareness of those effective preventive and therapeutic practices among those populations. Priorities for this area are:

  1. Identification and implementation of effective methods for disseminating new information to the relevant clinical community:
    1. For improving awareness of new information
    2. For improving adoption of new preventive and clinical practices.
  2. Identification and implementation of effective methods to disseminate information on effective preventive and therapeutic approaches to NeuroAIDS to the community:
    1. For improved awareness of new approaches;
    2. For improved adherence to effective preventive behaviors or therapies

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Participant List

David Clifford, M.D.
Washington University School of Medicine

E. James Essien, M.D., Dr.P.H.
Director
The HIV Prevention Center
College of Pharmacy and Health Sciences
Texas Southern University

Howard Gendelman, M.D.
Department of Pathology & Microbiology
University of Nebraska Medical Center

Gilberto R. Gonzalez, M.D.
MGH-NMR Center

.Eugene O. Major, Ph.D.
Molecular Medicine and Virology Section
Laboratory of Molecular Medicine and Neuroscience, NINDS

Justin McArthur, M.D.
The Johns Hopkins Hospital
Department of Neurology

Avindra Nath, M.D.
Department of Neurology
University of Kentucky Medical Center

Vinayaka R. Prasad, Ph.D.
Associate Professor
Microbiology and Immunology
Albert Einstein College of Medicine

Richard W. Price, M.D
University of California, San Francisco
Department of Neurology

Walter Royal, III, M.D.
Associate Professor Medicine
Departments of Medicine & Anatomy & Neurobiology
Morehouse School of Medicine

Ernestina Saxton, M.D., Ph.D.
Professor of Neurology
UCLA School of Medicine

Cecilia Shikuma, M.D.
Hawaii AIDS Clinical Research Program
Young 5, Leahi Hospital

Elyse Singer, M.D.
Greater Los Angeles Healthcare Center

Tilahun. Yilma, DVM, Ph.D.
Director and Professor of Virology
International Lab of Molecular Biology
School of Veterinary Medicine
University of California

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NINDS Staff

David J. Eckstein, Ph.D.
Program Analyst
National Institute of Neurological Disorders and Stroke, NIH

Alfred W. Gordon, Ph.D.
Associate Director for Minority Health and Research
Office of Minority Health and Research
National Institute of Neurological Disorders and Stroke, NIH

Gayathri Jeyarasasingam, Ph.D.
Program Director
Office of Minority Health and Research
National Institute of Neurological Disorders and Stroke, NIH

Piotr Kozlowski, M.D., Ph.D.
Program Director
Neural Environment Cluster
National Institute of Neurological Disorders and Stroke, NIH

Ms. Donna Sullivan
Program Analyst
Office of Minority Health and Research
National Institute of Neurological Disorders and Stroke, NIH

Contact Person:
Ronnie D. Horner, Ph.D.
Program Director
Office of Minority Health and Research
National Institute of Neurological Disorders and Stroke, NIH

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Last updated April 12, 2011