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Patient Perspective: What Aging Patients With HIV Want Their Providers to Know

Melanie Reese

Subject Matter Expert, HIV Aging
Technical Expert Panel
Health Resources and Services Administration
Baltimore, Maryland

Melanie A. Reese has no relevant conflicts of interest to report.

View ClinicalThoughts from this Author

Released: January 4, 2021

As a result of improved treatments, persons with HIV are surviving into middle and old age. Healthcare providers need to understand common issues that are unique to this population of individuals. As a woman living and aging with HIV, here is my perspective on key take-home messages for providers who care for aging patients with HIV.

Psychosocial Aspect
Many patients aging with HIV are finding that our trusted healthcare providers and other members of the healthcare team are retiring from clinical practice. We must now entrust our care to new, younger providers who think of HIV infection as a chronic, manageable disease. They have no memory of the early years of the epidemic, and often it falls on us, the patients, to train our new providers on how we want and need to be cared for during our clinic visits. First and foremost, we need our younger providers to always remember that we are whole human beings who have struggled through years of trauma, fear of dying, stigma, shame, judgement, rejection, powerlessness, hopelessness, loneliness, and isolation. The COVID-19 pandemic has only exacerbated these issues in persons living and aging with HIV.

We are also the first cohort of persons aging with HIV, including older adults and those who were perinatally infected early in the pandemic and are now in their late twenties to late thirties. We did not expect to survive to middle-age and beyond, so we did not make long-term plans, financial or otherwise. As such, many of us live on low fixed incomes and depend on Medicare and Medicaid for our primary health insurance.

Interdisciplinary Care
Coordinating the clinical, structural, and practical aspects of treating older adults with HIV requires interdisciplinary health teams working together to ensure optimal health outcomes and enhanced quality-of-life experiences.

Beginning at age 50, older adults with HIV require comprehensive colocated healthcare services and programs. These colocated health programs include teams specializing in geriatrics, mental health, infectious disease, cardiovascular disease, internal medicine, metabolic disease, oral health, nutrition, physiology, exercise, hearing, and vision. A successful best practice model is UCSF General Hospital’s Golden Compass Clinic located in San Francisco, California.

Ask and Listen
When we come to your office or appear on your screen for our appointments, HIV may not be our primary reason for the visit. COVID-19 restrictions have increased the occurrences of substance use, intimate partner violence, elder abuse, grief, loneliness, adherence lapses, housing insecurity, food insecurity, posttraumatic stress disorder, and other mental health issues. When taking your patient assessments, be observant for signs of abuse or poor hygiene. Ask about sexual activity, especially whether it is consensual or coerced. Ask about living arrangements. Of most importance, incorporate the “5 Ms” of geriatric care into your patient assessment protocols:

  1. Mind: Cognitive, mental, and emotional health
  2. Mobility: Balance, gait, walking, and standing
  3. Multiple morbidities: Chronic conditions that might be caused by long-term medications or aging
  4. Multiple medications: As we age, our bodies do not metabolize medications as they did when we were younger. Check medication dosages, contraindications, and whether the medication is still needed
  5. Matters most: Sometimes these are the issues that need to be taken care of before HIV because of their potential impact on optimum health outcomes; although this is listed fifth, it should be asked after the comprehensive visit questionnaire

Finally, providers must realize that we are experts when it comes to our bodies. Listen, learn, and collaborate with us as part of our medical team.

Your Thoughts?
How can we ensure that providers are properly trained on best practices for treating aging persons with HIV? Please answer the polling question and join the discussion in the comments section.

Provided by Clinical Care Options, LLC

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Educational grant provided by:
Gilead Sciences, Inc.
Merck Sharp & Dohme Corp.
ViiV Healthcare

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