Consumers Committee Minutes, April 20, 2021



Tuesday, April 20, 2021, 1 – 3:00PM

By Zoom Video Conference


Committee Members Present: Lisa Best (Co-chair), Randall Bruce (Co-chair), Atif Abdul-Haqq, Asia Betancourt, Paul Carr, Maria Diaz, Billy Fields, Lawrence Francis, Yves Gebhardt, Charmaine Graham, David Martin (Consumer-at-Large), Michael Rifkin, Leo Ruiz, John Schoepp, Rob Walker

DOHMH: David Klotz,Melanie Lawrence,José Colón-Berdecía, Kimbirly Mack, Guadalupe Dominguez Plummer, Scott Spiegler  

Guests: Genie Siegler, MD (Weill Cornell Medical Center); Anjali Sharma, MD (Einstein College of Medicine)

Agenda Item #1: Welcome/Introductions

Lisa and Randall opened the meeting, followed by introductions and a moment of silence.  The revised draft minutes of the March 16, 2021 meeting were approved noting one change from David M. clarifying that all OPWH materials be accessible in one location on Google Drive (Melanie can provide a tutorial on how to use Google Drive). 

Agenda Item #2: Public Comment

Paul stated that, while specific information on older women is important, there needs to be similar data on older men and transgender people.  Charmaine stressed the importance of data on vision issues for OPWH.

José announced that the deadline for applications for the Council and committees is June 18th and encouraged Committee members to reach out to their networks and peers.  He is available for presentations or to speak one-on-one with consumers who have questions about the Council.

Agenda Item #3: Presentations on HIV & Aging

Evolving Care Needs of Older Women with HIV

Dr. Sharma (Einstein School of Medicine) presented on health challenges associated with aging with HIV among older women with HIV (OWWH), how HIV-associated non-AIDS conditions may impact women differently than men, the emergence of geriatric syndromes and functional decline as key challenges in the care of OPWH, particularly women, and a definition of healthy aging.  Women account for more than half of all PWH globally, but are underrepresented in research and have unique biological and socio-behavioral risks influencing comorbidity.  The prevalence of comorbidities increased markedly as PWH age, and even more so among OWWH.  The Committee was reminded of information previously received on age-related conditions in PWH and focused on several areas where women are more impacted. 

Weight gain related to the use of ARTs is more evident in women, which can lead to high blood pressure, diabetes and other outcomes.  Osteoporosis is also more prevalent in OWWH, resulting in greater risk of fractures and other results of loss of bone density (hip, wrist and vertebrae fractures).  There are also disparities in osteoporosis screening, diagnosis, treatment among Black women compared with white women.  PWH need to screen for osteoporosis at a younger age than non-PWH and women at a younger age than men. 

Depression (the most common mental health issue among OPWH) is twice as prevalent among women than men.  OWWH are more likely to have comorbid mental health conditions, concurrent mental and physical health comorbidities, and worse overall mental health.  Depression is associated with poorer health outcomes, and more time spent depressed increases mortality, as well as lower cognitive functioning.  Symptoms associated with menopause are also more common among OWWH.  The psychosocial needs of OPWH were reviewed, with an emphasis on the high prevalence and adverse effects of loneliness.  People who suffer from loneliness were more likely to report depression, alcohol and tobacco use, and have fewer supportive relationships.  Social isolation is associated with increased risk of mortality. 

Dr. Sharma shared data on falls among OPWH, which can result in severe trauma and injury or even death.  Falls are much more common among women (e.g., ¾ of all hip fractures are among women).  She described a screening process for assessing the risk of falls. There was an overview of polypharmacy (discussed in detail at previous presentations).  Polypharmacy is one of the strongest predictors of fall risk, which occurs with greater frequency among womenthan in men and with increasing age.  The associations between mortality and frailty are stronger among older women than men.  HIV-infected adults manifest impaired physical function and frailty at an earlier age. 

Health Aging means creating the environments and opportunities that enable people to be and do what they value throughout their lives.  Everybody can experience Healthy Aging, and being free of disease or infirmity is not a requirement.  Many older adults have one or more health conditions that, when well controlled, have little influence on their wellbeing.  People need the functional ability to meet their basic needs, learn, grow and make decisions, be mobile, build and maintain relationships, and contribute to society.  This requires both an individual’s capacity, and also their environment (home, community and broader society).  Being able to live in environments that support and maintain your intrinsic capacity and functional ability is key to Healthy Aging. 

COVID-19 has had a big impact on OPWH, including: age-associated morbidity and mortality, older people who are not fully independent may have greater exposure risk (i.e. family or aides coming to help with groceries), may be unable to receive needed help during the pandemic, and increased social isolation (i.e., unable to have visitors or go out and do things with others). 

In summary, as HIV management simplifies to single pill regimens with greater potency and reduced toxicity management focus is shifting.  The management of multiple chronic comorbidities and age-associated conditions such as geriatric syndromes assume greater importance.  OPWH exhibit higher rates of age-associated chronic conditions and MM than HIV-negative individuals of the same age, and there is a greater emphasis needed on functional ability and maintaining independence and wellness across the lifespan.  The system must address a lack of integration of primary and specialty care; of mental health and medical health; and of medical setting and community, and must plan for burgeoning long-term care needs.  There is a need for integrated mental, cognitive, and physical health services; greater attention to comorbid mental health management; evaluation of existing measures developed for geriatric populations without HIV in specific populations including PLWH, racial and ethnic minority groups, older sexual orientation and gender Identity minority populations; inclusion of women in adequate numbers in research to examine sex-differences; a specific focus on conditions that disproportionately impact WLWH or that may have different underlying mechanisms or manifestations; a blend of access to HIV-based and age-based community services and supports; and linkages with community agencies that serve older individuals.

A summary of the discussion follows:

  • There isn’t specific data on women and people of color concerning vision issues, but sensory impairment (sight, hearing, etc.) is a huge issue.  For example, vision or hearing impairment can greatly interfere with the quality of telehealth. 
  • Often older women are reluctant to seek care, and there are some gender differences in how people report their needs.
  • Polypharmacy relates to both prescription and over-the-counter medications.  Taking multiple medications definitely can contribute to greater likelihood of falls.  Also, PWH generally start earlier with medications due to their HIV status, and thus are exposed longer to polypharmacy as they age.  Changes in how people metabolize medications as they age (including gender differences related to that) have an increased effect from polypharmacy.

Evolving Care Needs of Older Women with HIV

Dr. Siegler (Weill Cornell Medical Center) presented on models of care for older people with HIV (OPWH) and Long-term Survivors (LTS).  In some NYC ZIP codes, more than 2% of people over 60 are HIV-positive, with the biggest concentrations in the Bronx, Manhattan and Brooklyn.  HRSA is devoting more resources to care for OPWH.  On the federal, state and local level there is more education and technical assistance, as well as some demonstration projects.  However, there is a lack of models for smaller programs and too many silos.  As the field of HIV and aging evolves, the care system must meet complex and changing social needs.  The broad areas of need are: 1) Psychiatric (depression, cognitive issues, etc.); 2) Biomedical (aging-related syndromes, co-/multi-morbidity, etc.); 3) Social Stressors (stigma, isolation, etc.); 4) Unmet Practical Needs (nutrition, housing, etc.); 5) Psychosocial Issues (loneliness, fear, etc.).  All have an impact on health and well-being for OPWH and care models must meet needs in all domains. 

Care models must include: Comprehensive assessment; Comprehensive care plan;

Monitoring patient status and adherence to the care plan; Care coordination between providers, settings, and services; Facilitation of patient transitions between health care settings; and Facilitation of patient access to community resources.  Ryan White pays for many services, but one size does not fit all.  Programs need flexibility to fill care gaps.  Models developed by academic programs may not be successful in smaller clinics.  Instead, programs need to think about what consumers need.  An approach called “Differentiated Service Delivery” can begin by thinking about what steps clinical programs can take to improve care of OPLWH and LTS and how Ryan White funds can help to efficiently use limited resources.

We need to think about how care can be improved in the time of COVID (telehealth, keeping offices safe for visits, meeting psychosocial needs, etc.).  We also need to think about how care can be integrated (combining HIV and geriatric care, as well as social services), and if the clinic is the place for this to happen or can each site create an alternative model that is more consumer-centered, eliminating silos of care. 

Various models of geriatric care were reviewed: 1) PACE, a program of all-inclusive care of the elderly designed to keep people in their homes in the community and out of nursing homes; 2) Village Model, which involves members of a community paying annual fees to support a village administrator that organizes regular socialization events and helps coordinate needs; 3) NORC (naturally occurring retirement community), which facilitates and integrates the health and social services already available in the community; 4) Veterans Affairs program, which provides personal care services and help with activities of daily living.  These models can be adapted to meet the needs of PWH and LTS. 

In summary, Dr. Siegler encouraged the Committee to think big.  Determine the needs of OPWH and LTS that aren’t being met; Think inside and outside the clinic; Be specific (request RWPA funding to help programs leverage resources); Ask how can RWPA funding can truly integrate care; Insist that individual programs have more autonomy and share successes and failures with each other. 

A summary of the discussion follows:

  • Some PWH may feel uncomfortable receiving services in mixed use settings such as congregate housing where both PWH and non-PWH get care.  We need to make sure that PWH feel safe receiving care and services. 
  • The Committee can look at how non-HIV specific program models can be adapted to serve PWH, and it is important to let consumers have their say when planning for this.
  • There is a need to inform clinicians and other providers who are not HIV specialists about HIV issues, particularly around aging.  
  • It is most important that individuals are comfortable where they receive care and that they are getting the best care possible.  That a provider looks like the client may be important in certain cases (e.g., mental health services for African-Americans).
  • PACE, NORC and other programs exist in Tri-County (Dr. Siegler will send a list).

The Committee thanked the presenters for the wealth of information, which will be highly useful in the development of a service directive.

There was a consensus to revise the timeline for development of the OPWH service directive to hold two meetings in June (6/8 and 6/22, in addition to the Town Hall on 6/4).

There being no further business, the meeting was adjourned.