Feds Launch National HIV/AIDS Strategy Implementation Plan
On August 26th, the White House Office of National AIDS Policy (ONAP) director, Harold Phillips, announced publication of the Federal Implementation Plan for the National HIV/AIDS Strategy. A “dear Colleague” letter was circulated among advocates shortly before the announcement and Mr. Phillips discussed the release of the implementation plan via recorded video, published to the federal government’s HIV.gov blog.
Significantly, the implementation plan details more than 380 action items from 10 different federal agencies and specifically adds focus issues of quality of living among people living with HIV/AIDS (PLWHA) which will be added to the Medical Monitoring Project’s data tables in 2023. Many of the action items detailed include education and outreach and coordination of efforts between affected federal agencies and state partners. Much of this work intersects with the Biden Administration’s efforts to address health equity and disparities, given the disproportionate representation of marginalized communities affected by HIV.
For most advocates, the announcement was a “mixed-bag” of good news and frustration at planning that primarily highlights assessments and monitoring where data may already exist or where advocates have already outlined more concrete steps they wish the federal government to take. For example, advocates and the federal government is well-aware that thanks to the advancements in quality of medications to treat HIV and being able to keep more patients engaged in care, the population of PLWHA is generally much older than they were in say…2000. However, our planning and supports for this aging population is not sufficiently strong. Medicare integration and coverage of support services specific to PLWHA is lacking and the federal government has had to engage in repeated enforcement actions against skilled nursing facilities and assisted living facilities, both regarding the refusal to provide services to PLWHA and the failure to have adequate services for PLWHA in the facility’s care.
The new quality of life metrics focus on issues of mental health, behavioral health support, food insecurity, unemployment, and unstable housing for PLWHA, with the last 3 items being considered “structural/subsistence” issues for patients. These items are arguably significantly intertwined and success or failure in any may implicate success or failure in all of these items.
In order for the federal government’s efforts to meaningfully move forward, these plans should be treated as a roadmap, rather than actions themselves. One of the things we are very good at in HIV is planning and processing. Where efforts tend to fall short is in implementation and in order to improve implementation, we need to identify if those failures to implement are due to lack of appropriate resources, expertise, or conflicting federal and state policies and priorities. Advocates should seek to hold our friends at ONAP and other agencies accountable to proactive action in defending the rights of PLWHA as patients and acting on appropriate integration of care for our aging colleagues and friends – both in terms of ensuring existing entities serving an aging population are aware of how to care for PLWHA and in ensuring entities serving PLWHA are adequately supported to care for an aging population.
In assessing effective uses of limited resources and the plan’s goals toward meeting these quality of life metrics, advocates and the federal government should consider how to leverage the Ryan White program as a workforce development and employment opportunity in order to help lift patients and highly affected communities out of poverty and, in so doing, addressing the other listed quality of life metrics. The 2021 (fiscal year) budget for the Ryan White program is $2.4 billion (not including AIDS Drug Assistance Programs). Those dollars, when focused on employing people living with and at risk for HIV, those who would otherwise be or are already Ryan White clients, would provide a significant opportunity to address these quality of life concerns and meaningfully put these dollars to use in the community the funds are meant to serve.
Improvements to Public Health Guidelines, Despite Covid-19
2022 is off to a roaring Covid-19 start with both mainstream news and scientific outlets focusing on variant development, diversifying vaccines, and the impacts of the pandemic on various aspects of our lives. Last year, Community Access National Network opened our blog with discussing Covid-19’s Impact on HIV, HCV, and Substance Use Disorder and the theme crawled through our public policy discussions of the last year. While the topic is likely to set the frame for all variety of public health and policy throughout 2022, there is a necessity to discuss the developments in our space in spite of the distractions COVID has to offer.
Early 2021 found the Biden administration rescinding the “axe” the previous administration gave to the so-called “X” waiver, a requirement for providers to seek specified training in order to administer buprenorphine based medication assisted treatment for patients experiencing opioid use disorder. While providers and advocates hailed eliminating the X-waiver as a move toward advancing care, reports stated administration officials found problems with the rule as written, calling it “premature”. The Department of Health and Human Services (HHS) would later update treatment guidelines by way of formal notice posted to the federal register on April 28th, expanding eligibility of providers to administer the treatment when they “intend” to treat fewer than 30 patients a year. What enforcement looks like around the word “intent will be an area to watch as this area of public policy develops.
Later in the year, the Centers for Disease Control and Prevention (CDC) updated their Sexually Transmitted Infections Treatment Guidelines, the first overhaul since 2015. While the most significant updates to the guidelines are focused on the treatment of gonorrhea, an area of focus given the bacteria’s penchant for developing resistance to treatment, other highlights include aligning the guidelines with the CDCs 2020 recommendation for universal Hepatitis C screenings and adoption of the Advisory Committee on Immunization Practices (ACIP) recommendation for Human Papilloma Virus (HPV) “catch-up” vaccination schedules for people assigned male at birth. These and other additional updates were made, in part, because the CDC’s 2021 annual report found the United States facing the 6th consecutive year of STI increases.
Among ACIP’s many accomplishments in a year that found the panel meeting nearly twice as often as usual, a November meeting overshadowed by the endorsement of recommending Covid-19 vaccines for 5-11 year olds provided also found ACIP recommending universal adult Hepatitis B vaccination.
In a similar vein to the aforementioned updates (and with much rejoicing from advocates), the White House Office of National AIDS Policy “turned the lights back on” with the appointment of Harold Phillips as Director. Mr. Phillips provided an update to the National HIV/AIDS Strategy, announced in December with a focus on acknowledging structural barriers to achieving goals, including racism, stigma, and violence against transgender women. The plan, however, does not specifically outline ways to address these particularly challenging, systemic issues. President Biden also recognized World AIDS Day with a characteristically frank review of the history this country has with HIV and AIDS and the obstacles we still face in working to Ending the HIV Epidemic.
One of the last developments of 2021 included the CDC updating its clinical practice guidelines for pre-exposure prophylaxis for the prevention of HIV (PrEP). The update shifts language in such a way to encourage providers to more openly bring up the issue of PrEP with all patients rather than solely seeking to target “high-risk” populations. This move falls in-line with the efforts to reduce PrEP stigma among the broader public and, specifically, among providers. This was a particularly exciting development in light of the Food and Drug Administration’s (FDA) approval of cabotegravir (branded as Apretude) for PrEP. The long-acting injectable was first approved for the treatment of HIV in early 2021 and poses an extraordinary advancement in the potential for medication delivery mechanisms, improving adherence, and, ultimately, advancing efforts to End the Epidemic. Of note, pharmacy benefit managers, specifically CVS, anticipated this move as much as advocates and patients have. Despite a supposed commitment to investing in health equity with regard to HIV, CVS’ own “payor solutions” site boasts of the methods the entity will use seeking to delay or deny access to this and other innovative care under the need to “balance cost” with effective or curative treatments.
Looking into the new year, HHS’ annual policy report indicates the agency will seek to strengthen protections afforded to LGBTQ patients and more appropriately define discrimination in plan design, affecting patients living with HIV and HCV.
While these changes in direction and advancements in treatment are quite thrilling, advocates should be prepared to compete for space to be heard and anticipate familiar “foes” continuing to refuse to engage or finding ways to blockade access to care. Be they based in political ideal or industry priority or even from providers, patients and advocates would be better served when those who have traditionally disfavored advancing equity and access engaged in discussions on how to find the win-win for all parties. Community Access National Network remains committed to engaging stakeholders across interests in this space and looks forward to the good-faith efforts of those who seek to move these adversarial relationships to partnerships and even friendships.
Jen’s Half Cents: Family Courts, Child Welfare Services & Missed Opportunities for Intervention and Linkage to Care
One of the things I often relate in HIV advocacy and health care advocacy is the remarkable nature of the work we do. Yeah, we can absolutely get bogged down in the nuances of payment policies and necessary regulatory functions, but that’s not what motivates us. What truly drives us is a desire to improve the lives of those around us. And, as is the nature of any community built on shared trauma, HIV advocacy is unique in how it bonds us to one another. There’s little quite like it, regardless of the stakeholder. “On the ground”, we share about everything – our relationships, our hobbies, our sex lives, our triumphs and struggles, and, yes, our families. So nearly a decade into this work, it wasn’t a surprise–when I sought some emotional support—to find I could console with my colleagues as friends upon finding myself wrapped up in a complex custody battle. It brought me a great deal of comfort to receive advice on playing a supportive role to my partner as a parent and to share things like holiday photos and craft projects.
What did surprise me was coming to understand with great intimacy how family court and child welfare systems fail to consider their roles in family health, especially with regard to multi-generational poverty and behavioral risks. On February 6th, 2020, I was sitting in a court room awaiting a hearing while another parent’s case was being heard. The parent was seeking a change to a custody arrangement because the mother of his children had experienced a mental health break, was very likely to face homelessness, and he was making a concerted effort to both keep her involved in their children’s lives and to do so in a way that set her up for success. After his hearing concluded, he respectfully asked if the hearing officer or the court social worker could recommend resources for his ex to navigate public assistance and benefit applications. The response he received was, “we don’t know, we just don’t do that,” and I was shocked—truly and remarkably shocked—the court was unprepared for this request. It can’t possibly be an uncommon one. As he got up to leave, I politely stopped him and gave him information for a local federally qualified health center, Access Health Louisiana, which happens to be Ryan White funded.
This incident incited a shift in my perspective and self-education regarding issues of health, HIV-status, and family court and child welfare issues. A 2003 report from the ACLU’s AIDS Project found providers reporting clients having lost custody, denied visitation with their children, or having been barred from being foster or adoptive parents due to their sero-status. Indeed, parents have had their custody arrangements negatively impacted by merely associating with PLWH. In 2015, POZ Magazine covered the story of Donna Branum, a mother in Kansas who temporarily lost custody of her children because her fiancé’s HIV-status. While Branum was ultimately granted the right to return to a joint custody arrangement, the issue came to the attention of the court because Branum’s ex-husband petitioned the court, claiming Ms. Branum’s fiancé posed a “health risk” to the children. The ACLU’s 2003 report appropriately describes this type of stigma and lack of foundational, basic HIV-related education as discriminatory.
Thanks to a Supreme Court decision in 1998, HIV status, including “asymptomatic” cases, is covered under the protections offered by the Americans with Disability Act (ADA). While Bragdon v. Abbott centered on a dentist refusing to provide care for Sydney Abbott based upon her HIV status, the ruling contributed to the Department of Justice specifically mentioning HIV (twice) as a covered disability in its August 2015 guidance on the rights of parents and potential parents and technical assistance document regarding family courts and child welfare agencies:
Excerpt:
3. Who do Title II of the ADA and Section 504 protect in child welfare programs?
Answer: Title II of the ADA and Section 504 protect qualified individuals with disabilities, which can include children, parents, legal guardians, relatives, other caretakers, foster and adoptive parents, and individuals seeking to become foster or adoptive parents, from discrimination by child welfare agencies and courts. Title II also protects individuals or entities from being denied or excluded from child welfare services, programs or activities because of association with an individual with a disability. For example, Title II prohibits a child welfare agency from refusing to place a child with a prospective foster or adoptive parent because the parent has a friend or relative with HIV.
A 2013 UNAIDS report, entitled Judging the Epidemic, describes denying parents with HIV custody and visitation rights as “arbitrary, disproportionate and ineffective” with regard to any public health interest and urges courts to consider “actual” risk to a child’s welfare rather than “theoretical” risk. UNAIDS recognizes both children’s best interests and the rights of parents living with HIV as human rights issues needing careful address. However, even back in 1992, the book, AIDS Agenda: Emerging Civil Rights Issues, recognized family court matters provided an opportunity for “…the worst characteristics of litigants [to] emerge, with divorcing parents raising issues based on prejudice rather than on concerns of parenting ability – out of their own bias, anger, or an attempt to appeal to the anticipated biases of judges.” Both sources cite the American Bar Association’s position defending the rights of parents living with HIV and legal precedents in which parents living with HIV needed to employ medical experts to explain what’s commonly understood in medical circles: it is impossible to transmit HIV via casual, household contacts.
I’d be remiss not to mention a growing area of study currently gaining more attention: how—both psychological/emotional and physical—abusers use family court processes to exert control over their intended victims. At the intersection of family court processes being abused and parents living with HIV is the decade-old Centers for Disease Control report on domestic/intimate partner violence as “…both a risk factor for HIV, and a consequence of HIV.” This area deserves more attention than it gets; the least of which being a follow-up and more recently updated data than is provided in the CDC report.
In fact, despite attention to educating children and families and providing a holistic approach to outreach and linkage to care, the National HIV Strategy doesn’t mention family courts or child welfare agencies even once. With the HIV epidemic disproportionately impacting Black Women, family courts and child welfare agencies have a very unique opportunity as non-traditional partners to impact the public health of their communities. However, to even begin doing this, family court judges and child welfare agencies would need to begin addressing policies and procedures that essentially penalize poverty (often confusing poverty with negligence), rather than assisting families in need.
“We recognize the lives of PLWH are often impacted by people not working in HIV,” Louisiana’s implementation of their Ending the HIV Epidemic plan, Get Loud Louisiana, states. The plan is the first (to my knowledge) to include activities to engage family courts, social workers, and child welfare agencies to educate and change policies to better serve this public health interest.
Like all issues surrounding HIV, this is an intersectional one. Well-established is the role and social support of family for people living with HIV, and family court’s primary mission is the health and well-being of families; policies and procedures for resource-sharing are of paramount importance in meeting both of these sets of needs. To end the epidemic, to set families up for success, to address stigma, to help keep PLWH engaged in care, and so much more, we must begin to engage these critical stakeholders. We cannot afford to continue to miss this opportunity.
Highlights from the Viral Hepatitis National Strategic Plan
On January 7th, the Department of Health and Human Services announced publication of an updated plan to eliminate viral hepatitis in the United States. This “roadmap” coincides with HHS’s release of the first Sexual Transmitted Infections (STI) National Strategic Plan on December 18th, 2020, and an update to the HIV National Strategic Plan on January 15th, 2021.
Notably, these documents reference one another and specifically call for integrated efforts to tackle these syndemics across stakeholder groups, specifically including substance use-disorder as part of a “holistic” cohort. Additionally, each contains a near identical vision statement:
- The United States will be a place where new viral hepatitis infections are prevented, every person knows their status, and every person with viral hepatitis has high-quality health care and treatment and lives free from stigma and discrimination.
- The United States will be a place where new HIV infections are prevented, every person knows their status, and every person with HIV has high-quality care and treatment and lives free from stigma and discrimination.
- The United States will be a place where sexually transmitted infections are prevented and where every person has high-quality STI prevention, care, and treatment while living free from stigma and discrimination.
All three vision statements end with the following: This vision includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance.
Each plan addresses a limited but indefinite list of social determinants of health such as socio-economic burdens impeding access to care, including racism, intimate partner violence (IPV), and stigma and acknowledges discrimination against sexual and gender minorities (SGM). COVID-19 is mentioned repeatedly as underscoring and providing a highlight to the United States’ excessive health disparities, giving a nod to the unfortunate…”opportunity” the pandemic has provided health care advocates working with or as a part of these highly affected, highly marginalized communities. “The pandemic has exacerbated existing challenges in the nation’s public health care system, further exposing decades, if not centuries, of health inequities and its impact on social determinants of health.” Plans also acknowledge personnel and resources from programs addressing STIs, viral hepatitis, and HIV have been heavily redirected toward efforts to address COVID-19.
All plans call for better data sharing across providers and reporting agencies and an increase in surveillance activities, with an emphasis on local-level efforts to rely on local data, rather than national-level trends. Each plan also calls for expanded testing, interventions, linkage to care, provider and community education, and access to treatment, including incarcerated populations. The Viral Hepatitis National Strategic Plan (VHNSP) described “poor quality and a paucity of data” as clear impediment to meeting the goals of the plan. Sparring no stakeholder with access, the plan highlights a need for data sharing among correctional programs, health insurers, public and private health systems, mental and behavioral health, public health entities, and more.
The VHNSP also acknowledges opportunities to take lessons from the fight against HIV and the need to integrate “treatment as prevention” as a powerful tool in combating new HBV and HCV infections.
The Viral Hepatitis Strategy National Plans notes the following key indicators:
On track for 2020 targets:
HBV deaths
HCV deaths
HCV deaths among Black People
Trending in the right direction:
HBV vaccine birth dose (87% for people born between 2015-2016 by 13 months, WHO recommends 90% by 13 months)
HBV vaccine among health care personnel
HBV-related deaths among Black people
HBV-related deaths among people over the age of 45
Not on track:
New HBV infections
New HCV infections
New HBV infections among people 30-49 years of age
HBV-related deaths among Asian Americans and Pacific Islanders
New HCV infections among people of 20-39 years of age
New HCV infections among American Indians and Alaska Natives
The plan recognizes an 71% increase in HCV infections in reporting years 2014-2018 and points toward a strong data correlation between these new infections and the opioid epidemic, based on local area reporting data. Care related challenges include lack of personal status knowledge, perinatal transmission, and cost of curative treatment.
The plan states ideal engagement in various activities across an astoundingly broad scope of stakeholders including faith-based organizations for outreach and education, stigma and anti-bias training among all client-facing personnel, the opportunity to engage comprehensive syringe services programs as an outlet to provide HCV medication and more traditional services like referral for opioid-use disorder, educating providers and employers about federal protections for people with viral hepatitis, increasing awareness through school education programs – specifically culturally sensitive and age-appropriate sex education programs.
From issues of criminalization laws to lack of cohesive data collection, overall, the plan is very welcomed, comprehensive approach toward addressing viral hepatitis. With the STI and HIV plans mirroring very closely.
While the plans call stakeholders to address economic barriers to care and other social determinants of health, specifics are lacking. Stakeholders may wish to consider some of the priorities in the Biden administration’s public health approach including hiring from affected communities (including reducing or allowing alternative education requirements like live-experience or consideration of on-the-job training opportunities). These lofty goals may also require regulatory changes in order to implement and realize them fully (i.e. mechanisms incentivizing correctional facilities and the Veterans Administration to share data with local or state health departments and establish linkage to care programs). Private funders would be wise to take advantage of this opportunity and fund innovative, comprehensive pilot or demonstration projects. Advocates would be wise to leverage these documents when seeking state-level regulatory changes and advocating for federal funding and program design.