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Momah R, Jones E, Nkaleke D. Trends in out-of-care HIV status among people living with HIV in Mississippi 2017-2021. HPHR. 2024;87.https://doi.org/10.54111/0001/JJJJ2
The state of Mississippi has faced significant challenges in managing the HIV epidemic, particularly concerning the engagement of people with HIV (PWH) and inconsistent medical care. Research indicates that retention in HIV care is critical for achieving viral suppression and reducing HIV transmission. Understanding the trends in out-of-care services can shed light on the effectiveness of current public health strategies and identify gaps that need to be addressed.
The study used data that was exported from CDC Atlas Plus, a national sexually transmitted diseases surveillance database from the Centers for Disease Control and Prevention (CDC). Out-of-care rates were calculated manually. Joinpoint Regression was used to identify trends in out-of-care rates by gender, race, and age
Overall, out-of-care rates increased for Blacks, females, 13–24-year-olds, 35–44-year-olds, and 55-plus age groups. There are upward trends for out-of-care status in females, (AAPC: 1.8%, 95% CI: 1.93%–5.76%), Blacks (AAPC, 8.5%, 95% CI: -4.42% to 25.84), Hispanics (AAPC, 3.15%, 95% CI: -6.71% to 15.15), and Pacific Islanders (AAPC, -15.51%, 95% CI: -35.27% to 1.34%). There are also upward trends for out-of-care status in 13–24-year-olds (AAPC, 4.9%, 95% CI: -9.58% to 23.77), 35-44 years old (AAPC,1.7%, 95% CI: -3.52% to 7.44%), and 55 plus (AAPC, 0.69%, 95% CI: -1.65% to 3.10%).).
The study identified an increased risk of out-of-care status among people with HIV (PWH) in Mississippi. Therefore, it is imperative that the activities of the Mississippi State Department of Health (MSDH) Ryan White Part B and Ending the HIV Epidemic Programs collaboratively elicit a strong and inclusive public health and healthcare workforce response, and continue further statistical analyses to eliminate high rates and upward trends of out-of-care status.
The state of Mississippi has faced significant challenges in managing the HIV epidemic, particularly in engaging people with HIV (PWH) with inconsistent medical care. Mississippi has one of the highest rates of HIV prevalence in the United States, with considerable disparities in health outcomes based on race, gender, and socioeconomic status.1 Despite advances in HIV treatment and the availability of antiretroviral therapy (ART), many PWH in Mississippi remain out-of-care, which exacerbates health disparities and hampers efforts to control the epidemic.2
Research indicates that retention in HIV care is critical for achieving viral suppression and reducing HIV transmission.3 However, multiple barriers to care exist in Mississippi. They include stigma, limited access to healthcare, and socioeconomic challenges, particularly in rural areas.4 These factors contribute to significant numbers of PWH not being consistently engaged in care services, which is reflected in the state’s high rates of late HIV diagnosis and lower rates of viral suppression.2 The trends in out-of-care status among PWH in Mississippi from 2017 to 2021 need to be thoroughly examined to develop targeted, effective, and evidence-based interventions. To address the disproportionate impact of HIV and bridge the critical gaps in the care continuum, it is essential to implement stigma reduction interventions within diverse MSM (men who have sex with men) communities.5
Previous studies have shown that continuous engagement in HIV care leads to better health outcomes and reduced HIV-related mortality.6 This research aims to analyze the patterns and factors associated with PWH who have not been consistently engaged in care during the specified period. These factors are demographic characteristics such as gender, race, and age. They will be considered to understand the broader context of out-of-care trends. Addressing factors such as stigma and discrimination and eliminating barriers to HIV testing, care, and treatment are needed to effectively address these disparities in HIV-related care outcomes.7 Despite significant clinical and virological advancements in HIV care, HIV-related stigma and discrimination remain substantial obstacles to achieving an overall high quality of life for PWH.8
From 2009 to 2018, HIV incidence has declined across all age groups except those ages 25-34. Diagnoses decreased among specific groups over these years; specifically, among men who have sex with men (MSM), which is defined as men who have had sexual contact with other men. Diagnoses decreased overall for White MSM, remained stable for Black MSM, and increased for Hispanic/Latino MSM.9
From 2017 to 2021, several efforts were made to address these issues, including federal and state initiatives aimed at improving HIV care. The “Ending the HIV Epidemic” initiative, launched in 2019, focuses on areas with high HIV burden, including Mississippi, by enhancing efforts in diagnosis, treatment, prevention, and response.1 The EHE plan focuses on 57 jurisdictions – 50 counties and 7 states with the highest rates of HIV – which includes Mississippi. Then detail what is in the plan – notably the ambitious goal of reducing HIV infections by 75% decrease by 2025 and then at least a 90% reduction by 2030. As of 2022, Mississippi has lower rates of in-care status, and knowledge of status compared to the United States. Mississippi also has a higher rate of out-of-care status than the United States. Four interventions showed improvements in linkage to or retention in HIV care at follow-up, utilizing behavioral incentives and/or case management as primary strategies.10 However. Most trials lacked adherence to standardized definitions or metrics for linkage to or retention in HIV care, making it difficult to compare results across studies.
Viral suppression rates among Hispanic/Latino men who have sex with men (HLMSM) were higher for Ryan White clients compared to national averages, indicating that comprehensive care and services can help reduce disparities. These findings highlight the need to identify individual, social, and structural factors that contribute to condomless sex without PrEP use and unawareness of HIV status, as well as to determine the best strategies for scaling up comprehensive care and services.11
Despite these efforts, Mississippi continues to struggle with high rates of PWH who are out-of-care. Data from the CDC indicates that a significant proportion of individuals diagnosed with HIV in Mississippi are not retained in continuous medical care.1 This gap in care contributes to higher rates of morbidity and mortality among PWH and perpetuates the cycle of HIV transmission within the community.
By focusing on Mississippi, this study contributes to the broader understanding of HIV care engagement in regions with high HIV burdens and limited healthcare resources. It highlights the need for comprehensive strategies that address the multifaceted barriers to care, including expanding healthcare access, reducing stigma, and improving social support systems for PWH.12 To achieve the national Ending the HIV Epidemic (EHE) goals, prevention and treatment must be made available, affordable, and accessible to everyone. Additionally, there should be a strong emphasis on long-term well-being, managing multimorbidity, and ensuring a good quality of life.13
Analyzing trends in out-of-care HIV medical services from 2017 to 2021 will provide valuable insights that can enhance the effectiveness of current strategies and identify gaps that need to be addressed. By understanding these trends, public health officials and policymakers can develop more effective interventions to ensure that PWH in Mississippi receive the continuous, high-quality care they need to achieve viral suppression and improve their quality of life.
Out-of-care in the study was defined as participants, who did not have one CD4 count or viral load test within 12 months. These standards have been implemented and followed by the surveillance staff at the Mississippi State Department of Health (MSDH).
Data was exported from the Centers for Disease Control and Prevention (CDC) Atlas Plus.14 The variable called recipient of HIV medical care was selected within the database as a suitable indicator of out-of-care status among people with HIV (PWH) in Mississippi. Out-of-care status was identified by finding the inverse of in-care cases. Out-of-care rates were calculated manually. The calculation of standard error in SAS Studio and the preparation of MS Excel/text files were used to generate out-of-care models and trends in the Joinpoint Regression Software.15 Stratification was utilized to separate the sample into subgroups (gender, race, age groups). The Bayesian model was selected because it has a higher probability of the hypothesis being correct and allows for prior information to be put into the model. Annual percent change and average annual percent change were selected to provide a more accurate measure of trends over a pre-specified interval.
Out-of-care rates were calculated manually using the data from CDC Atlas Plus. The rate formula was used to calculate the out-of-care rate per 1,000. The formula involved subtracting the number of patients in care from the total population of HIV-positive persons in the specific group (race, sex, age) to identify the number of out-of-care patients. Then, the number of out-of-care patients was divided by the total population in the specific group (race, sex, age), multiplied by 1,000. Standard error was calculated using SAS Studio. The annual pPercent change (APC) and average annual pPercent change (AAPC) of out-of-care rates in 3 sub-groups (race, sex, age) were calculated using U.S. Surveillance, Epidemiology, and End Results (SEER) Joinpoint regression program version 5.0.15 Joinpoint regression describes trends and significant changes in trends.
APC assumes the change at a constant percent of the rate of the previous year to predict outcomes.16 Therefore, the following regression model is used to estimate the APC for a series of data:
,(y-intercept) where is the natural log of the rate in year “y”.
The APC from year “y” to year “y+1”
APC assumes the change at a constant percent of the rate of the previous year to predict outcomes.16 Therefore, the following regression model is used to estimate the APC for a series of data:
,(y-intercept) where is the natural log of the rate in year “y”.
The APC from year “y” to year “y+1”
The AAPC is a weighted average of the slope coefficients of the underlying Joinpoint regression model with the weights equal to the length of each segment over the interval.17 If we denote bi as the slope coefficient for the ith segment with i indexing the segments in the desired range of years, and wi as the length of each segment in the range of years, then:
The exponential function of the summation of multiplying the slope coefficients and the length of the segment in the range years divided by the summation of the slope coefficients minus 1 and multiplied by 100 yields the average annual percent change.
Based on the Bayesian information criterion, the Empirical Quantile Method was used to identify the significant best-fit line for trends.18 The Empirical Quantile Method is a new method that uses resampled residues to generate the empirical quantile function. The p-value was not calculated based on the method. However, each model tested for significance and listed the results for significance. Confidence intervals were calculated for APC and AAPC.
Characteristic | Out of Care Rates** | *AAPC (95% CI) | Trend Segment 1 (95% CI) | ||
2011 | 2021 | 2017–2021 | Years | *APC | |
Gender | |||||
Male | 295.7 | 286.0 | -0.07 (-5.13 to 5.29)* | 2017–2021 | -0.07 (-5.13 to 5.29)* |
Female | 286.2 | 299.3 | 1.8 (-1.93 to 5.76)* | 2017–2021 | 1.8 (-1.93 to 5.76)* |
Race | |||||
Black | 158.9 | 278.8 | 8.5 (-4.42 to 25.84)* | 2017–2021 | 8.5 (-4.42 to 25.84)* |
White | 319.8 | 309.1 | .-0.41 (-2.73 to 1.89)* | 2017–2021 | -0.41 (-2.73 to 1.89)* |
Hispanic/Latino | 423.8 | 451.6 | 3.15 (-6.71 to 15.15)* | 2017-2021 | 3.15 (-6.71 to 15.15)* |
Asians | 437.5 | 318.2 | -10.76 (-30.04 to 6.25)* | 2017-2021 | -10.76 (-30.04 to 6.25)* |
American Indian/Alaska Native | 400 | 300 | -4.0 (-14.15 to 6.26)* | 2017-2021 | -4.0 (-14.15 to 6.26)* |
Native Hawaiian/ Other Pacific Islander | 1,000 | 333.3 | -15.5 (-35.27 to 1.34)* | 2017-2021 | -15.5 (-35.27 to 1.34)* |
Age (yrs) | |||||
13-24 | 209.8 | 227.7 | 4.9 (-9.58 to 23.77)* | 2017-2021 4.9 (-9.58 to 23.77)* | |
25–34 | 275.4 | 266.7 | -0.55 (-8.82 to 8.34)* | 2017-2021 -0.55 (-8.8 to 8.34)* | |
35–44 | 274.9 | 284 | 1.7 (-3.52 to 7.44)* | 2017–2021 | 1.7 (-3.52 to 7.44)* |
45-54 | 316.5 | 292.8 | -1.02 (-7.42 to 5.72)* | 2017–2021 | -1.02 (-7.42 to 5.72)* |
55+ | 313.1 | 314 | 0.69 (-1.65 to 3.10)* | 2017-2021 | -0.69 (-1.65 to 3.10)* |
Note: *Significant AAPC, or APC, Average Annual Percent Change (AAPC); **Rate per 1,000
From 2017 to 2021, the out-of-care rate among blacks increased by 75.5% (158.9 persons out-of-care per 1,000 to 278.8 persons out-of-care per 1,000). The out-of-care rate among whites decreased by 3.3% (319.8 persons out-of-care per 1,000 to 309.1 persons out-of-care per 1,000). The out-of-care rate among Hispanics/Latinos increased by 6.6% (423.8 persons out-of-care per 1,000 to 451.6 persons out-of-care per 1,000). The out-of-care rate among Asians decreased by 27.3% (437.5 persons out-of-care per 1,000 to 318.2 persons out-of-care per 1,000). The out-of-care rate among American Indian/Alaska Natives decreased by 25% (400 persons out-of-care per 1,000 to 300 persons out-of-care per 1,000). The out-of-care rate among Native Hawaiians/ Other Pacific Islanders decreased by 66.7%. (1,000 persons out-of-care per 1,000 to 333.3 persons out-of-care per 1,000). (Table 1)
AAPC of Out of Care Rates
From 2017 to 2021, there was an average annual increase of 8.5% (AAPC, 8.5%, 95% CI: -4.42% to 25.84%) in Blacks. An average annual decrease of 0.41% (AAPC, -0.41%, 95% CI: -2.73% to 1.89%) in Whites. An average annual increase of 3.15% (AAPC, 3.15%, 95% CI: -6.71% to 15.15) in Hispanics/Latinos. An average annual decrease of 10.76% (AAPC, -10.76%, 95% CI:-30.04% to 6.25%) in Asians. An average annual decrease of 4.0% (AAPC, -4.0%, 95% CI: -14.15% to 6.26%) in American Indians/Alaska Natives. An average annual decrease of 15.5% (AAPC, -15.51%, 95% CI: -35.27% to 1.34%) in Native Hawaiians/ Other Pacific Islanders. (Table 1)
CI:CI:CI:CI:CI:CI:
APC of Out of Care Rates
The trends in blacks consisted of 1 segment: a significant APC of 8.5% (95% CI: -4.42% to 25.84%) in the first segment (2017-2021). The trends in whites consisted of 1 segment: a significant APC of -0.41% (95% CI: -2.73% to 1.89%) in the first segment (2017-2021). The trends in Hispanics/Latinos consisted of 1 segment: a significant APC of 3.15% (95% CI: -6.71% to 15.15%) in the first segment (2017-2021). The trends in Asians consisted of 1 segment: a significant APC of -10.76% (95% CI: -30.04% to 6.25%) in the first segment (2017-2021). The trends in American Indian/ Alaska Native consisted of 1 segment: a significant APC of -4.0% (95% CI: -14.15% to 6.26%) in the first segment (2017-2021). The trends in Native Hawaiian/ Other Pacific Islanders consisted of 1 segment: a significant APC of -15.5% (95% CI: -35.27% to 1.34%) in the first segment (2017-2021). (Table 1)
From 2017 to 2021, the out-of-care rate among the 13-24 years age group increased by 8.5% (209.8 persons out-of-care per 1,000 to 227.7 persons out-of-care per 1,000. The out-of-care rate among the 25-34 years age group decreased by 3.2% (275.4 persons out-of-care per 1,000 to 266.7 persons out-of-care per 1,000). The out-of-care rate among the 35-44 years age group increased by 3.3% (274.9 persons out-of-care per 1,000 to 284 persons out-of-care per 1,000). The out-of-care rate among the 45-54 years age group decreased by 7.5% (316.5 persons out-of-care per 1,000 to 292.8 persons out-of-care per 1,000). The out-of-care rate among the 55-plus years age group increased by 0.29% (313.1 persons out-of-care per 1,000 to persons 314 out-of-care per 1,000). (Table 1)
AAPC of Out of Care Rates
From 2017 to 2021, there was an average annual increase of 4.9% (AAPC, 4.9%, 95% CI: -9.58% to 23.77%) among the 13-24 years age group. An average annual decrease of 0.55% (AAPC, -0.55%, 95% CI: -8.82% to 8.43%) among the 25-34 years age group. An average annual increase of 1.7% (AAPC, 1.7%, 95% CI: -3.52% to 7.44%) among the 35-44 years age group. An average annual decrease of 1.02% (AAPC, -1.02%, 95% CI: -7.42% to 5.72%) rate among the 45-54 years age group. An average annual increase of 0.69% (AAPC, 0.69%, 95% CI: -1.65% to 3.10%) among the 55-plus years age group. (Table 1)
CI:CI:CI:CI:CI:
APC of Out of Care Rates
The trends in ages 13-24 years consisted of 1 segment: a significant APC of 4.9% (95% CI: -9.58% to 23.77%) in the first segment (2017-2021). The trends in ages 25-34 years consisted of 1 segment; a significant APC of -0.55% (95% CI: -8.82% to 8.43%) in the first segment (2017-2021). The trends in ages 35-44 years consisted of 1 segment: a significant APC of 1.7% (95% CI: -3.52% to 7.44%) in the first segment (2017-2021). The trends in ages 45-54 years consisted of 1 segment: a significant APC of -1.02% (95% CI: -7.42% to 5.72%) in the first segment (2017-2021). The trends in ages 55 plus years consisted of 1 segment: a significant APC of 0.69% (95% CI: -1.65% to 3.10%) in the first segment (2017-2021). (Table 1)
In 2021, out-of-care rates were higher in females, Hispanics, and adults ages 55 and older. There were upward out-of-care trends in females, Blacks, Hispanics, and the 13-24 age group. These findings are identical to national statistics regarding persons with out-of-care status 19 Blacks, Hispanics, and younger populations ages 18 -24 are more likely to be out-of-care. Past research indicates that out-of-care rates are particularly higher in these groups due to substance use disorders, mental health disorders, low socioeconomic statuses, lack of financial resources, health resources, or access to Ryan White services, or individuals having schedules that make drug adherence difficult.19-20 Nationally, the HIV cascade analysis shows that 25% of people diagnosed with HIV are out-of-care, and 46% are not retained in care.21 These findings support a need for interventions to address local and national out-of-care rates.
Based on these findings, there needs to be more awareness of Ryan White’s services locally and nationally. By using Ryan White’s services to support persons with HIV, it will allow support to be provided to individuals and groups, who may be at risk of being out-of-care. Ryan White will be able to provide PLH with financial support for medical care, HIV/AIDS medical care, social services, and long-term medical care management. These services include AIDS pharmaceutical assistance, early intervention services, health insurance premium and cost-sharing assistance for low-income individuals, home and community-based health services, home health care, hospice, medical case management, adherence services, medical nutrition therapy, mental health services, oral health care, outpatient/ambulatory health services, substance abuse outpatient care, emergency financial assistance food bank/home delivered meals, health education/risk reduction, non-medical case management services, other professional services, outreach services, permanency planning, psychosocial support services, referral for health care and support services, rehabilitation services, respite care, substance abuse services (residential), housing, legal services, linguistic services, and medical transportation.
This study has some limitations. First, based on the nature of the study, there is a low capacity to estimate associations. Second, there is a limitation to the study’s timeframe due to the unavailability of public data after 2021, which is why the study focused primarily on findings between 2017-2021. Finally, the analysis was only stratified by age, race, and sex due to the lack of data on other groups, such as sexual orientation.
The major strength of this study was its use of surveillance data from a national CDC database. The study is also meaningful because it focuses on analyzing trends and changes over periods. The reports and data from the CDC database are reliable and consistent with both national and local findings.22
Due to the significant implication of a high out-of-care rate in PWH, Mississippi must work intensely to strengthen the awareness and provision of Ryan White services to recently diagnosed PWH and to patients, who are out-of-care due to financial, physical, and mental health challenges. The implications of the most at-risk groups that were identified within this study, specifically females, Blacks, Hispanics, the 13-24 age group, and the 55 plus years age group being out-of-care are the increased risk of spreading the disease, and the increased risk of mortality. It is the mission and vision of Ryan White Part B and Ending the HIV Epidemic program to end the HIV epidemic by reducing the rate and number of Mississippians out-of-care. To address these issues, the program will implement activities that target at-risk groups identified within the study, who are out-of-care through establishing partnerships with sororities, and minority organizations, creating educational and promotional content using social media and artificial intelligence software. By implementing these strategies, the Ryan White Part B and Ending the HIV Epidemic program aims to eliminate inequities among minority groups by offering solutions that will ensure that everyone receives access to care and is aware of opportunities to receive support and funding. These strategies will also eliminate obstacles to accessing care, housing, and education due to discrimination against marginalized groups, such as Blacks, females, individuals with low socioeconomic status, and the LGBTQIA-plus community. Therefore, it is imperative that the MSDH Ryan White Part B and Ending the HIV Epidemic Programs work collaboratively to elicit a strong and inclusive public health and healthcare workforce response, and further statistical analyses to eliminate high rates and upward trends of out-of-care status.
Dr. Rita Momah was born in Nigeria. She obtained a bachelor’s degree from the University of Nigeria, an MPH from Louisiana State University-Shreveport, LA, and a DrPH from Jackson State University. She has served/serves in numerous capacities including as an adjunct professor at Louisiana State University- Shreveport, LA, and as Principal Investigator on the Ryan White Ending the HIV Epidemic grant for Mississippi. She is a Fellow of multiple organizations including Region IV Public Health Training Institute, American College of Medical Practice Executives, and American College of Healthcare Executives. She is a Master Certified Health Education Specialist and has served as a health promotion specialist, an administrator of marketing, and an administrative director in different organizations. Dr. Momah is a member of several honor societies, including Alpha Chi, Golden Key International Honor Society, Phi Kappa Phi, and Alpha Epsilon Lambda. She also holds professional memberships in several organizations, including the American College of Healthcare Executives and the Mississippi Public Health Association. Dr. Momah has also written several peer-reviewed manuscripts.
Elizabeth Jones was born in Vicksburg, MS but has lived the majority of her life in the Jackson, Mississippi area. Elizabeth has served as a CDC/CSTE Applied Epidemiology Fellow, a consultant, and a researcher. Currently, she serves as an Epidemiologist II at the Mississippi State Department of Health within the HIV/STD Unit. She has a bachelor’s degree in sociology/pre-med from Tougaloo College. She also has a master’s degree in public health from Jackson State University. Currently, she is a DrPH student at Jackson State University. Elizabeth was also selected as a student marshal for the College of Health Sciences during the fall graduation ceremony at Jackson State University in 2020, selected as a plenary speaker for the 2nd International Webinar on Physical Health, Nursing Care, and COVID-19 Management, and as a guest lecturer for a CEAL Webinar Session held at the University of Southern Mississippi. She has published 11 articles with 6 articles as 1st author with topics ranging from COVID-19/infectious diseases to sleep apnea. One of her 1st person publications was awarded the top 100 most-read and top 100 most-cited in IJERPH in February 2024. The paper was also selected as a 2nd prize winner of the IJERPH 2021 Best Paper Award. She also served as a reviewer for several journals and the American Public Health Association Conference and as a technical editor for the recently published book entitled, Epidemiology for Dummies. She is also an author of a book chapter entitled, Epidemiology of Childhood Sleep Apnea. She was also selected as Marquis Who’s Who of America 2024. Elizabeth is also an editorial board member for MED DOCS-Depression and Anxiety.
Dr. Dennis Nkaleke obtained a Bachelor of Medicine and Bachelor of Surgery (MBBS) from Ebonyi State University, Nigeria, and an MPH from the University of Southern Mississippi. Currently, Dr. Nkaleke serves as a program specialist III and clinical researcher. He is an accomplished healthcare professional with a wealth of knowledge and experience in public health, clinical care, and research. Dr. Nkaleke has developed and implemented evidence-based interventions, analyzed data, and led multidisciplinary teams. Dr. Nkaleke is dedicated to improving health outcomes and reducing health disparities for diverse populations. He has a proven track record of success in academia, clinical settings, leadership, and public health organizations.
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