Patient and Patient Advocates’ Reflections on Oral Health Care Challenges for Patients Living with HIV/AIDS

“The Ryan White Program played a tremendous role in my ability to survive my HIV diagnosis Nobody expected it. I didn’t expect to live as long, let alone retire and age with dignity and respect.”

-Cecilia Denis, HIV long-term survivor and patient advocate

On November 29, 2023, in honor of and in solidarity with World AIDS day, AcademyHealth, together with its organization member, the Weitzman Institute, and with funding from the CareQuest Institute for Health, co-hosted a national webinar to announce the rollout of a three-part policy brief series titled “Barriers and Opportunities for Improving Dental Healthcare Access, Utilization, and Outcomes for People Living with HIV/AIDS (PLWHA).” The 60-minute webinar featured contributions from two members of Weitzman Institute’s PLWHA Patient Taskforce, and a prominent HIV/AIDS researcher, who provided valuable context and nuance to help understand why PLWHA continued to experience unmet oral care needs. Cumulative insights shared by the panelists were aligned with Agency for Healthcare Research and Quality (AHRQ)’s definition of access to health care as having four components:

Coverage: facilitates entry into the health care system. Uninsured people are less likely to receive medical care and more likely to have poor health status.
Services: Having a usual source of care is associated with adults receiving recommended screening and prevention services.
Timeliness: ability to provide health care when the need is recognized.
Workforce: capable, qualified, culturally competent providers.

The first panelist and member of Weitzman’s Patient Taskforce, Cecilia Dennis, is an advocate for modernization/repeal of HIV criminalization laws, bodily autonomy and social determinants of equity, including equal access to health insurance and models of care that provide comprehensive health care to people living with HIV. Ms. Dennis described her own patient journey in seeking oral health services based on her 34 years living with HIV and six years as a patient advocate conducting patient outreach and patient care coordination. She spoke about the humiliation and stigma she experienced shortly after her diagnosis as an initial barrier to seeking care. Ms. Dennis credits the Ryan White HIV/AIDS Program for its role in providing comprehensive services that allows her to live and age with dignity and respect as a PLWHA. Nonetheless, she also noted that there are opportunities for improving care delivery and access under the program. As a resident of rural part of Virginia, she described her own challenges with obtaining oral health services under Part F of the Ryan White HIV/AIDS Program, including driving over 200 miles roundtrip to obtain oral health services covered under this Program (services challenges), having to wait up to 6 months for an appointment (timeliness challenges), and multiple prior authorizations being denied (coverage challenges).

Richardo Jackson, member of the Weitzman Patient Taskforce and Founder and CEO of Campbell Health Solutions, Inc., whose mission is to promote health and educational services that support the wellbeing of those most vulnerable to HIV, STDs, and other determinants of health served as the second panelist. Mr. Jackson built on Ms. Dennis’ remarks by sharing that in his work as a patient care advocate, PLWHA having to travel two hours by bus and an hour by car each way to access oral health care services. He noted that this means for a 10 a.m. appointment, a patient has to get up by 7 a.m. and usually has to expect to spend at least half a day or longer for appointments given how common it is to get to their appointments on time. Subsequently, he observes his PLWHA clients who are on a limited income and cannot afford to take a substantial amount of time off, often deciding to forego preventive care. Similarly, Mr. Jackson noted that the operating hours of oral health care providers being limited to the usual 9 a.m. -5 p.m. business hours further contributes to barriers in access. Mr. Jackson also called attention to the oral health care staff who do not have the similar lived experiences as the patients they serve, may not speak the language of the patients, nor be able to explain oral health issues and care options (workforce challenges). He specifically called attention to the need to decriminalize HIV care with the example of PLWHA from mixed-status families, whose family members include people with different citizenship and immigration statuses, and as a result, may fear seeking oral health services.

Dr. Sheldon Fields, appointed faculty at the Weitzman Institute, inaugural Associate Dean for Equity and Inclusion in the Ross and Carol Nese College of Nursing at Penn State University, and President of the National Black Nurses Association, provided remarks based on his expertise both as a HIV prevention research scientist, as well as a family nurse practitioner providing clinical care to PLWHA for close to three decades. Dr. Fields noted the critical nature of ensuring that PLWHA have access to oral health care services given their weakened immune systems, and more complex oral health conditions this population faces. Second, he explained that the challenges that PLWHA experience in accessing oral health care is part of a larger national challenge with 130 million Americans, including 1 out of 5 children and 1 out of 4 adults across the United States, that are without dental coverage of any kind. He noted that one of the largest challenges is the significant oral health care workforce shortage and the need to get more people trained in this profession. Third, described in detail the need to revamp existing health professions curriculum, as well as re-train the existing oral health care workforce given that stigma, fear, discrimination, and misconceptions about providing oral health care services to PLHWA is still quite common in clinical practice. Dr. Fields noted the great variation across states in training around providing care to PLWHA and how common it is for clinicians to renew their license without necessarily having to take an HIV course. Moreover, he noted that the need to retrain health care workers is not limited to the clinical team, rather, also applies to the non-clinical staff such as administrative support who are the first professionals that PLWHA come into contact with when they walk into a clinic.

All three panelists emphasized the need to advocate for funding the Ryan White Program, as well as other initiatives that address each of the access issues (coverage, services, timeliness, workforce). Policy, research, and clinical practice recommendations for how to move forward are outlined in the patient/patient partner-led, three-part policy brief series: