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.

Jen’s Half Cents: Supporting Patients by Supporting Families and Survivors of Intimate Partner Abuse

I’m a family man. I always have been. I tend to write in the evenings or at night and I like to do so sitting in bed. As I write this, my partner has dozed off next to me and her children are sleeping down the hall after a busy day of school and family time. I’m thinking about one colleague who had a health scare over the last couple of days (he’ll be ok) and the depth of emotion between worry and love is something that I can near physically feel. My sense of family is strong and the relationships I consider familial extend to a very select group of colleagues in the space of patient advocacy. I’ve often cited that sense of family as part of what keeps me happy in this work. That love is one I am fortunate to have and it’s something I like to remind folks of from time to time, in part, because this work is hard and paying witness to struggles comes with its own emotional toll and reminding colleagues we are driven to this work from a sense of justice and love is often…refreshing, reinvigorating.

A few years ago, at one of ADAP Advocacy Association’s first Fireside Chats, one of my most favorite industry partners, and one of the most brilliant people I’ve had the pleasure of knowing, raised the issue of intersections between the dual epidemics of HIV and substance use. Particularly, she focused on needing to raise awareness of long-term risks for those experiencing non-fatal overdoses, those intersections with infectious disease, and how public health programming would be better served with a more holistic approach to patient care, rather than the often-segmented or siloed environment we still have today. While more syringe services programs are adopting HIV and Hepatitis C testing and linkage to care activities and more HIV programs are offering more competent care for substance users, especially around medication assisted treatment, outside of these activities, there’s little being done to ease the high burden on patients to coordinate their own care across multiple providers or entities. National strategies and funding certainly prioritize referrals, but referrals aren’t the same as successful linkage, successful linkage isn’t the same as retention in care, and at the point of patient experience and meeting public health goals, those distinctions are important. I am of the somewhat unpopular opinion among some recipients and subrecipients that program metrics and grant awards should reflect these differences but that’s for another discussion.

My friend would move the discussion forward by talking about how powerful and moving testimony and advocacy from affected mothers and families, targeting these voices for education on the intersection of infectious disease and substance use, building coalitions would serve to advance the interests of both of these patient communities and especially so for patients living at the intersection of these conditions. As I was meeting with her in December of this year, I had to tell her, “I think about this conversation a lot.” And I do. Years later, this conversation pops up in my mind as I think about patient stories and priorities, different data about isolation as a predictor of substance use or how social supports are clear indicators in successful retention in care and viral suppression. We dedicate a massive chunk of behavioral health resources to ensuring patients have social supports precisely because having those supports is such a strong indicator of successful care. I often find myself thinking about the role families play in being a primary source of social support for many people, how ever we define family for ourselves. I think about this role of family when I assess intimate partner abuse data or read about how mothers experience legal abuse as a form of coercive control in custody situations. I think about it anytime we approach the issue of caregiver supports. I certainly thought about it last year when I wrote about how family courts and child welfare agencies are missed opportunities for linkage to care. I thought about the role of family and that conversation when a former co-worker was being stalked by the father of child at work and the employer failed to support or protect her. I thought about that conversation when recently asked to provide input on an academic institution’s midwifery committee and when a couple we’re friends with announced they’re going to start working to have another baby. I think about that conversation at every headline involving COVID and kids and how the financial supports extended in 2020 and 2021 reduced child poverty. I thought about that conversation while listening to a constituent impact panel on HIV criminalization in the state of Louisiana, how much patients rely on their families to advocate, navigate, support, and love them through what ever health challenges they may be facing. I think about that conversation when considering my own end of life planning and what I want for my family.

I found myself thinking again about that conversation and the need to better support families through public policy as one of many vehicles necessary for addressing the needs of people living with HIV, eliminating Hepatitis C, and tackling the substance use epidemic. I thought about that conversation last week as a bipartisan group of Senators introduced the Violence Against Women Reauthorization Act of 2022, after 3 years of failing to advance a reauthorization. As I read through the bill, I was happy to see funding for marginalized populations, including at-risk populations in Alaska and LGBTQI+ communities. I was happy to see Senators invest funding in directing a federal study on how parents alleging intimate partner violence are likely to lose primary custody over their children, already knowing how abusers leverage family court processes as a means of post-separation abuse is well-documented. I was happy to find a similar study on the association between intimate partner violence and substance use, specifically, how intimate partner violence increases the risk of substance use. I was disappointed to see a failure to more directly require family courts to be educated as to these issues because regardless of those study outcomes, families are weakened when abusers are able to leverage divorce proceedings as a means of further abusing their victims.

I think about all of these things when I think about what our advocate partners and funders are willing to take up as an issue worthy of their labor and dollars. While “mission creep” and maximizing our limited resources are certainly issues patient advocates and our funders must balance, we also have a moral and ethical calling to consider how those whose interests we seek to represent must also be represented holistically in the actions we take. More directly, those providers, patient advocates, and our funders should work to support public policies aimed at strengthening families and ending intimate partner violence on national and state levels. Today, we can do so by vocally supporting the long-overdue reauthorization of VAWA.

A Different Booster: HBV Vaccines among PLWHA

Because of the shared transmission vectors between HIV and Hepatitis B (HBV), the rate of co-infection is about 10% in the United States, according to the Centers for Disease Control and Prevention (CDC). As a result, people living with HIV (PLWHA) are more likely to experience adverse health impacts including cirrhosis and certain types of liver cancers. A small study conducted in Chile took a look at the recommended HBV vaccine schedule among adults living with HIV and HBV antibody uptake and potentially finding cause for a “high dose” fourth shot to be added into the series for PLWHA.

A giant asterisk belongs on the study’s findings, labeled “deserves further study consideration”. Despite being double-blinded, the study’s greatest weakness included participant pool size (right around 100 participants) and clinical selection criteria (which remains an issue in clinical trial work, generally speaking). In order to be considered for the study, participants generally had to present with an undetectable HIV viral load and no other comorbidities, ruling out application of the resulting data to most PLWHA and especially most long-term survivors or people experiencing barriers to care or medication adherence concerns – or those most likely to be impacted by HIV and HBV co-infection.

The study sought to examine the need for revaccination among PLWHA. Of note, the CDC’s “Pink Book” on HBV does not recommend “boosters” unless a particular “low” threshold of HBV antibodies is met, nor does the publication recommend for routinized serological testing among people who have previously received a vaccine. Therein lies a program and policy problem. We’ll get to that in a moment.

As a result of selection bias favoring those with more ideal circumstances, few participants dropped out of the trial. The study itself found that a fourth and “stronger” dose of vaccine improved antibody responses among people with “well controlled” HIV with an improved HBV antibody response from 50.9% in the low-dose arm of the study to 72% among the high-dose arm of the trial. After a one-year follow up, 80% of participants of the high-dose arm still had sufficient antibody titers, whereas only 39% of the standard-dose arm still had sufficient antibodies for protection.

While Ryan White and CDC funded clinical care programs for PLWHA require HBV monitoring and vaccination efforts as part of their grant funding, few entities necessarily do and almost no private providers do. Federally-funded providers may screen upon intake or initial labs but maintenance screening is not a priority in terms of clinical data collected on a given patient. Even on-site audits from these funders can sometimes look like reviewing particular case files and discussing details but the HBV conversation is not pressing. Rather, a review of intake data can suffice depending on the clinical auditor/consultant (site-visits and audits are often conducted under the supervision of the funding agency but only actually audited by consultants, including staff from other funded clinics).

Public funders aiming to end HBV and the unjust circumstances in which PLWHA are not educated by their providers on the other risks to their health should shift some focus to emphasize the need for preventative care – especially vaccines. Provider education for these publicly funded clinics should include the need to routinize HBV antibody monitoring not just as a concern on behavioral risk factors continuing in a client’s life but because HBV immunity is clearly not necessarily a given, regardless of prior vaccination history.

While the study suggests the need for investigating further, with regard to efficacy of HBV vaccines among PLWHA, the larger question - given the nation-wide rush for another vaccine (and boosters) - creating more robust standards of care among a population known to have immunological “memory-loss” due to the particular cells “attacked” by HIV seems to be in order. Part and parcel to that is tying this level of necessary education to funding and licensure could improve the quality of care PLWHA receive, especially those of low-income and otherwise marginalized identities.