CDC Publishes New Medical Monitoring Data

On August 22nd, the Centers for Disease Control and Prevention (CDC) published new data from the Medical Monitoring Project (MMP). The MMP is an annual, national survey sample evaluating certain behavioral and clinical characteristics of people living with HIV (PLWH). Particularly, the report now includes certain quality of life metrics and stigma related factors as suggested in the National HIV/AIDS Strategy (NHAS). Data was reported from the 2021 cycle, meaning collected from June of 2021 through May of 2022.These measures relating to stigma and quality of life offer insight as to the experiences of PLWH and potential barriers to care – ranging from housing and food insecurity to mental and emotional health.

The findings were a bit of a mixed bag. NHAS suggests an overall health rating of “good” or “better” among participants should reach 95% or better to consider this metric goal achieved. However, the 021 cycle saw a drop in overall health rating of “good” or “better” from 72% in 2020 to 69% in 2021, the lowest since 2018.

Similarly, the measure of “unmet needs” for mental health services increased from 21% in 2020 to 28% in 2021. This is also the highest rate of unmet mental health services needs since 2017. NASH sets the goal for this metric at 12%. In order to address these needs, federal and state funding designs and initiatives should reflect this priority. Among them, regulatory enforcement on mental health parity among insurance networks and reimbursement rates, especially in Medicaid programs, and public policy efforts aimed at those issues which affect mental health and overall health (like housing and food security and stigma via strengthening of anti-discrimination laws and incentivizing best practices in areas of life affecting people living with HIV such as child welfare programs, education programs, and among family courts). Why?

Among participants, 9% reported experiencing symptoms of major depression within two weeks of taking the survey and 7% reported symptoms of “other depression” in the two weeks prior to the interview. Similarly, 5% of participants reported “mild anxiety” in the two weeks previous to the interview and 8% reported “moderate anxiety” with the same percentage reporting “severe anxiety” during their interviews. In addition to these, 29% of participants reported experiencing intimate partner violence at some point in their lives, with 5% reporting intimate partner violence in the last 12 months and 17% reporting having experienced rape* in their lifetime and 1% within the last 12 months.

The neutral news is that the percentage of PLWH in an “unstable housing” situation has stayed steady from 2020 to 2021 at 17%. Given the economic upheaval of 2020 and continuing through 2021 and 2022, maintaining a rate of housing security is a notable achievement for our housing programs. However, NHAS sets the metric goal at 11%, meaning there’s still plenty of room for improvement in ensuring PLWH are adequately housed. Along these same lines, “food insecurity” also maintained its 2020 rate at 16%. Layered onto the human rights and sheer necessity of food access, many antiretroviral tablet regimens and medications used to treat co-occurring conditions require food in order to be properly absorbed. NHAS sets the goal for this metric also at 11%. If PLWH do not have sufficient, secure sources of nutrition and housing, all other care will fall by the way side. 8% and 38% of participants surveyed reported experiencing homelessness or having their household live in poverty, respectively. 16% of survey participants reported experiencing hunger or food insecurity.

Unemployment among PLWH dropped in 2021 to 15%, just higher than the 14% in 2019. 2020, for obvious reasons related to the emergency phase of the COVID-19 pandemic, saw a dramatic spike in unemployment among PLWH to 18% - far higher than the national average of 13% through 2020. Employment often offers PLWH not only a secure source of income, it also often offers insurance coverage and a pathway to security in housing and food. Strengthening the workforce is absolutely a necessity in achieving NHAS’s goal of at most 8% unemployment among PLWH. 39% of participants surveyed reported being unemployed or lacking an ability to work.

Lastly, and likely the most heartbreaking data from the survey, trends in stigma have reversed course from a 3% reduction in 2020 at 28%, increasing to 29% in 2021. Ensuring PLWH are not stigmatized when in care, at work, seeking housing or education, or when faced with those in positions of authority in other areas of life is critically important to ensuring we reduce experiences with harmful stereotypes. We can start by defining stigma in concrete terms and advocating for policies addressing those aspects of life for PLWH. While the NHAS sets the goal for this metric at 16%, even that’s still an unacceptably high level of stigma for the 1.2 million people living with HIV in the United States.

Payors participants utilized was highest for those enrolled in Ryan White coverage at 47%, Medicaid covered 43%, private plans covered 42%, 29% were covered by Medicare, and 9% reported being uninsured. 66% of participants reported viral suppression at their most recent clinical test with 62% reporting “sustained” viral suppression. 95% received outpatient care, 71% reported being retained in care, 81% reported they did not miss their HIV-related provider appointments, and 80% reported being prescribed antiretroviral medications. Reasons ever missing doses were reported as follows: 65% simply forgot to take their medications at some point, 42% reported a change in routine disrupted their medication cycle, 40% reported falling asleep early or oversleeping as a cause to miss a dose, 17% reported feeling depressed or overwhelmed, and – not shockingly but it really should be – 16% had a problem getting their HIV medication prescription filled or refilled.

MMP sites are located in 16 states and 6 separate funding jurisdictions. Participants gender demographics were identified as 23% cisgender women, 75% cisgender men, and 2% “transgender” with no differentiation among identity or sex assigned at birth for transgender participants. 55% of participants were older than 50, 20% were between the ages of 40-49, 18% were between the ages of 30-39, 7% were among those aged 18-29, and no participants younger than 18 were included. 43% reported their sexual identity as heterosexual or straight and 43% reported identifying as lesbian or gay, 10% reported identifying as bisexual, and 4% reported identifying as “another sexual orientation”. Lastly, the racial make up of the cohort was reported as follows: 41% African American/Black, 28% White, 24% Hispanic/Latino, 5% multiracial, 1% Asian, less than 1% American Indian/Native Alaskan. While the report was analyzed under a lens of accounting for certain skewed demographic participation, the limitation of experience should be noted.