The ACT NOW: END AIDS Coalition and AIDS United
With all eyes on public health as 2020 comes to a close while the COVID-19 pandemic rages, the people of the United States face multiple threats to wellbeing as we await the next presidential administration in 2021. In response to ongoing pressure from HIV and reproductive justice communities for a comprehensive federal initiative to stop the spread of HIV domestically, in 2019 the United States Department of Health and Human Services adopted Ending the HIV Epidemic: A Plan for America (EHE). Across the country, public health leaders recognized EHE as an opportunity for progress among the communities most impacted by HIV in this nation. However, the COVID-19 pandemic and several of the incumbent administration’s Executive Orders and policies have damaged health outcomes and violated the rights of communities already disproportionately impacted by HIV, and contradicted or delayed EHE efforts. The health and well-being of Black, Indigenous, Latinx, people of color, transgender, low-income, uninsured, and underinsured individuals across the United States requires their direct leadership in EHE efforts and federal safeguards that create equitable access to care for all Americans.
The next administration must elevate EHE and honor the work HIV leaders have put into the initiative thus far, while assuring that community is truly at the center of the next federal strategy. The 2020 World AIDS Day statement from Biden-Harris leaves us hopeful that together, the HIV community and incoming administration can create a robust plan to end the HIV epidemic in all communities across this country by 2025. The biomedical outcomes laid out in the nation’s current EHE initiative can only be achieved through the simultaneous prioritization and protection of the health and rights of people living with HIV (PLHIV) and vulnerable to the virus. The EHE Initiative creates a framework to end HIV in this country; its next iteration needs to work in compliment to advocacy for universal health coverage, racial health equity, housing assistance, food security, and must address all social determinants of health.
We caution the Biden-Harris administration from simply recycling and supplanting EHE with a resurrection of the National HIV/AIDS Strategy (NHAS) that was admirably led by the Obama Biden administration. NHAS provided a strong federal framework and foundation for where the nation needs to go to truly achieve an end to the epidemic. But the incoming administration must seize this opportunity to put forth an even bolder plan, backed by evidence and science-based policy, and in close collaboration with impacted communities in its development and implementation.
The ACT NOW: END AIDS (ANEA) Coalition represents community-based organizations, health departments, government, and community leaders invested in elevating community solutions to ending the HIV epidemic in the United States. In solidarity with the communities ANEA and AIDS United represent, we share the following recommendations to the incoming Biden-Harris Administration. Together, we can create a health system that protects individuals equitably regardless of race, gender, sexuality, migrant status, geography, economic status, or individual behavior.
Immediate action needed:
1. Restore trust in public health:
The inept and highly politicized COVID-19 response of the Trump administration circulated mixed messages and false statements about the virus, significantly hampering the ability of government agencies and health care providers to effectively disseminate best practices for containing COVID-19 and save lives. This mixed messaging, paired with a lack of a nationally coordinated response plan, have damaged public trust in health care, public health, and clinical research. As a step toward restoring trust, the US must offer health guidance that is clear, consistent, and science-based to both slow the spread of COVID-19 and address the roadblocks to EHE that have resulted as a consequence of the pandemic.
Trust is critical to actualizing biomedical prevention and treatment options for HIV (HIV-testing, pre and post-exposure prophylaxis [PrEP and PEP], and treatment-as-prevention)—whose service-delivery options have experienced significant interruptions due to COVID-19. Creating innovative messaging for biomedical HIV prevention, treatment options, and anti-stigma campaigns, such as Undetectable Equals Untransmittable (U=U), has become increasingly challenging due to the decline in public health credibility across the US.
Conversely, when leaders like Demetre Daskalakis and Rochelle Walenksy are chosen for high-level positions like their newest roles at the Centers for Disease Control and Prevention (CDC), because of their pre existing and tangible commitments to the HIV community, messaging about HIV prevention and treatment goes further and trust in public health institutions begins to increase.
Healthcare mistrust is higher in communities of color due to the compounding impacts of racial discrimination, over policing and excessive incarceration, and the US history of medical malfeasance against these communities. Thus practices like Molecular HIV Surveillance (MHS), a key feature of the “Respond” EHE pillar, create additional mistrust among HIV communities. MHS is the collection and use of people’s biological data to track and prevent new HIV transmissions in clusters. There is no evidence that these data, when paired with recency assays, won't be used to criminalize PLHIV. ANEA urges federal leaders to immediately create HIV surveillance and research safeguards, such as those laid out in AIDS United’s Public Policy Council June 2020 MHS Position Statement, to prevent the unintended consequences of MHS, and restore community trust in future plans to end HIV.
2. Address the barriers to ending HIV during the COVID-19 pandemic: According to a survey by NASTAD in August 20201, more than 90 percent of health department staff in jurisdictions within the federal EHE plan report being detailed to the COVID-19 response. Hospital and clinic closures have made HIV testing, labs, and screening for PrEP increasingly difficult across the country. Due to the pandemic, an already aging infectious disease workforce had to shift their attention entirely to caring for COVID-19 patients, leaving people with HIV with fewer options for care. As these service disruptions and closures continue, and social distancing regulations ease, an increase to HIV and sexually transmitted infection (STI) incidence is estimated across the nation.
According to a survey done by the National Coalition of STD Directors2, sixty percent of sexual health screening clinics report having to reduce hours or shut down altogether sometime due to COVID-19. The report highlights that the recent decline in reported STIs (many of which can be asymptomatic) is likely due to decreases in routine STI/HIV screening, and/or the inability to access programs. To prepare for the potential of a rise in STI and HIV rates, the recommendations detailed below for HIV also must be incorporated into the STI National Strategic Plan. Additionally, federal leaders should release public guidance that echos the creativity from health departments like the New York City Department of Health’s Safer Sex and COVID-19 guide that offers harm reduction strategies for both STIs and COVID-19 .
3. Secure/restore funding for innovative HIV programs and research: COVID-19 care is straining many state and city budgets, jeopardizing resources that fund HIV prevention, care, and research. National Institutes of Health (NIH) coordinated HIV research networks, which have been well-developed through years of bipartisan funding, have been increasingly leveraged for its expertise and infrastructure in the COVID-19 epidemic. Many HIV researchers doing critical research on novel HIV therapies, vaccines, and cures have been pulled into COVID-19 research, possibly slowing the pipeline of HIV therapies. The extra cost of adapting to telehealth and the delivery delays experienced by HIV-drug-research labs have put additional financial strains on HIV-research. HIV research remains a wise government investment, yielding significant cross-benefits in the development of therapeutics and other biomedical interventions for addressing HCV, tuberculosis, cancer and now COVID-19. Yet, despite the historical scientific gains, HIV research continues to be flat-funded with small increases in the past two fiscal cycles. A significant increase in resources is needed for the National Institute of Allergy and Infectious Diseases (NIAID) and the Office of AIDS Research (OAR) to truly reach a vaccine and a cure for HIV.
Funding increases across all National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention centers commensurate with the actual scopes of each epidemic and their sydnemic effects are critical to getting the nation on track to end HIV by 2025. Federal programs like HUD’s Housing Opportunities for People with AIDS (HOPWA) and the CDC’s Division of Viral Hepatitis have been chronically underfunded as waitlists for their life-saving services get longer. As individuals continue to lose jobs and health insurance due the pandemic, the strain on state-run Ryan White Care programs continues to grow. The FY2020 Coronavirus Aid, Relief and Economic Security (CARES Act) provided one-time funding to the current Ryan White HIV/AIDS Programs (RWHAP) who received $90 million for the COVID-19 related health service needs of their clients. While the pandemic remains uncontrolled, there is an immediate need for additional emergency funding to RWHAP, cities, and states across the nation.
Additionally, further research and investment into people living and aging with HIV is crucial. Half of PLHIV in the U.S. are aged 50 and older and there is an over 45% reliance on RWHAP among this population. To improve quality of life for PLHIV over 50, a holistic understanding of aging with HIV is necessary— from examining the long-term effects of previous HIV-treatments to unpacking the syndemic effects of social isolation, multiple morbidity, and polypharmacy.
4. Uphold the human rights of key communities impacted by HIV/AIDS: The previous administration expanded an unprecedented and often unilateral assault on the rights of historically marginalized and HIV-vulnerable communities in the U.S., including sex workers, people who use drugs (PWUD), people of trans experience, immigrants, Black people and other people of color. Through a series of harmful legislation, executive orders (EOs), as well as hateful and stigmatizing rhetoric - the rights of these communities have been dangerously eroded in the past four years, threatening these communities with violence and complicating their livelihoods and health. These policies only make it impossible for the administration and public health workers to engage these communities to end the epidemic. The Biden-Harris administration must take critical steps to directly restore and uphold the human rights of these communities impacted by HIV in its first 100 days.
Specifically, the incoming administration must immediately repeal and end several harmful and contradictory EOs that have complicated healthcare access, expanded punitive strategies that criminalize, and perpetuate stigma. These include orders that have disallowed any legal recourse for stigmatized communities that experience discrimination in the healthcare system (1557 waiver), to pronouncements that barred the participation of impacted communities in our nation’s armed forces simply due to their HIV status and/or transgender identity. Ending these policies are key to meeting the vision of “unity” that the incoming administration seeks across a fractured nation, by centering those who have historically and increasingly been pushed to the margins.
In addition to immediately ending harmful policies, the Biden-Harris administration must demonstrate support by subsequently increasing funding and resources for these communities. Increased funding to engage people-who-use-drugs and sex workers, two communities often neglected in ending the epidemic plans, is necessary to prevent new HIV transmissions. A way for the new administration to demonstrate its commitment to diverse communities is by lifting the federal funding ban on the purchase of sterile syringes, which are instrumental in preventing both HIV and viral hepatitis. This could lead to truly disruptively innovative strategies to end the HIV epidemic among communities who inject drugs. Additionally, decriminalizing and destigmitazing sex work by removing punitive laws that target sex workers and securing funding for HIV prevention and treatment options specific to the sex woker community would signal that the wellbeing of all individuals impacted by HIV is of importance to the incoming presidential administration.
5. Integrate the emerging innovations to telemedicine into federal efforts to end HIV: The telemedicine options for healthcare introduced by COVID-19 have not only improved appointment retention across the country but have also benefited community engagement, HIV prevention, and treatment widely. The creation of accessible, virtual community engagement through the distribution of mutual aid funds for basic technological and other needs (tablets, phones, WiFi hotspots, and grocery gift-cards) have increased participation in meetings focused on receiving community input on ending the epidemic plans. This elevated accessibility and re distribution of resources must continue beyond the COVID-19 pandemic in order to keep key communities at the center of public health strategies.
Innovations to PrEP, treatment, and other prevention options must be taken further by the incoming administration. Widespread access to 90-day supplies of HIV treatment or prevention medications have increased adherence across the nation, and in some states (WA, CO, CA) barriers to PrEP/PEP initiation have been removed by allowing for direct pharmacist prescriptions. In New York City, the promotion and access to on-demand PrEP (health clinics immediately starting people at risk for HIV on PrEP before all relevant laboratory tests return) has proven to be a safe model for increasing the uptake of PrEP via walk-in clinics. Streamlining funding and creating federal plans for the use of long-acting HIV treatment options such as intravaginal rings, injectable drugs, implants, and antibodies provides more options to individuals and can bring the U.S. closer to ending the HIV epidemic.
The COVID-19 pandemic has also shown us how profoundly beneficial telemedicine can be towards ending the overdose epidemic. The removal of arbitrary barriers to medication assisted treatment for opioid-use disorders has helped many people living with substance use disorders get access to previously unobtainable treatment. To mitigate the increase in overdose events since COVID-19, federal leaders must continue to augment naloxone distribution (including take-home naloxone) and advocate for access to medication-assisted treatment (MAT) for all people who want to stop using drugs.
6. Build directly upon the creativity of the intersectional HIV community: The HIV community has advanced innovative messaging and stigma reduction strategies, like U=U, that can help the U.S achieve its ending epidemic goals. Innovative harm reduction strategies, such as medication-assisted treatment and Safer Drug Consumption Spaces (SCS), have proven to reduce or cease injection drug use, greatly reducing the risk of HIV transmission. Strategies like these that push the envelope on traditional HIV prevention further, have been underfunded and undervalued in the current federal EHE strategy. The Biden-Harris administration must invest in the creativity of the communities most impacted by HIV to bring these innovations to scale in the current under resourced settings.
HIV leaders belong to intersecting movements and understand that any policy that advances the wellbeing of the individuals marginalized in the US is also a policy that can help end HIV. There are a number of critical community centered approaches to address the human-rights disparities currently occurring in communities marginalized across the nation. A few important examples of both practical and legislative recommendations to end HIV and the correlating inequities that fuel every domestic public health crisis in this nation are: 1. We the People; A Black Plan to End HIV 2. The National Latinx Health Policy Agenda 3. The Movement for Black Lives Policy Platform 4. The Sex Workers Outreach Program USA- Advocacy Agenda 2020-2022 5. American Disabled for Attendant Programs Housing Platform. To successfully end the epidemic, the incoming administration’s federal HIV response must integrate key concepts from these diverse guiding documents written directly by-and-for communities marginalized by HIV.
A new administration, a renewed opportunity for community leadership: As it stands, EHE funding requires the engagement of key communities throughout its four pillars. However, until clear pathways for community leadership are integrated into all aspects of a federal HIV strategy, this call will remain symbolic at best. We offer the following policy recommendations to the Biden-Harris transition team as opportunities to augment resources and create a safer environment for community-leadership throughout the nation’s HIV response.
Policy Recommendations:
To truly achieve any ending the epidemic goals, the Biden-Harris Administration and the 117th Congress must:
1. Undo Trump Era Executive Orders and Rules Detrimental to Ending the HIV Epidemic. a. Undo Trump’s final rule on section 1557 of the ACA
b. Repeal the ban against racial and gender justice trainings for federal workers
c. Repeal the attacks on LGBTQ communities
d. Repeal the harmful executive orders on migrant communities
e. Repeal global and domestic restrictions to sexual and reproductive healthcare and information
f. End the ban on open services by transgender and PLHIV in the military
2. Ensure Broad and Equitable Access to Effective HIV Care and Treatment. a. Enhance the Ryan White HIV/AIDS Program for the communities most impacted by HIV and continue to fund access to essential services (transportation, food and nutrition, linguistic services, case management, housing services, etc.) for program recipients b. Adopt national strategies to eliminate viral hepatitis, STIs, and TB
c. Eliminate the 29-month waiting period before SSDI recipients can obtain Medicare benefits
3. Prevent New HIV Transmissions.
a. Fund community-based HIV service organizations to provide COVID-19 testing, to increase local usage of ASO/CBOs and to potentially increase HIV testing among people who are traditionally missed by testing efforts
b. Work with Congress to fully repeal the ban on federal funding for sterile syringes and other materials needed to reduce the risk of HIV transmission in injection drug use. c. Fund and scale up PrEP, PEP, and treatment-as-prevention services and messaging for priority HIV populations
d. Eliminate mandatory and discretionary abstinence-only-until-marriage (AOUM) and sexual risk avoidance (SRA) programs in public schools
4. Address Social and Structural Barriers to Effective HIV Prevention and Care. a. Pass the Anti-Racism in Public Health Act to address structural racism in health care b. Extend the federal eviction moratorium until the COVID-19 pandemic is under control c. Support and pass legislation to end HIV criminalization via the REPEAL (Repeal Existing Policies that Encourage and Allow Legal) HIV Discrimination Act d. Decriminalize sex work
i. Pass the Safe Sex Workers Study Act to investigate the harms done by
FOSTA/SESTA
ii. Prevent the EARN It Act from passing
iii. Prevent the PROTECT Act from passing
e. Create and review, with community input, the uses of HIV molecular surveillance; create and publish guidelines restricting the access to said data from local, state, and federal policing and law enforcement agencies; and research its efficacy in helping to reduce transmissions
f. Eliminate eligibility restrictions to accessing HUD programs related to drug use or drug related convictions
g. Support the Mainstreaming Addiction Treatment Act and remove regulatory hurdles to access to medication assisted treatment, the gold standard of care for opioid-use disorder
5. Maintain U.S. Leadership in Lifesaving Research.
a. Make sustained multi-year increases for HIV/AIDS research funding to meet the annual Professional Judgement Budget target from OAR at the NIH
6. Support the Meaningful Involvement of People Living with and Vulnerable to HIV.
a. Center the communities most impacted by the HIV epidemic in EHE leadership and decision-making
b. Include people living with HIV directly in the Biden-Harris administration and in the broader federal government
Conclusion:
ANEA and AIDS United lay out a comprehensive way to end the U.S. HIV epidemic by 2025 through community solutions in our policy paper: Ending the HIV Epidemic in the United States: A Roadmap for Federal Action. Originally published in 2018, in 2020 ANEA updated the Executive Summary to reflect the new challenges posed by the COVID-19 pandemic and the emerging opportunities to act in favor of Black lives and racial justice. Both the complete 2018 Roadmap and the 2020 Executive Summary can be found at www.anea.org/the-roadmap. We welcome the opportunity to integrate key concepts from this transition document and our Roadmap into a Biden-Harris federal plan to end the HIV epidemic.
Together, we can end the structural disparities that fuel the HIV and COVID-19 epidemics such as poverty, antiblack racism, homelessness, transphobia, xenophobia, increased policing, and economic inequality.
Sincerely,
Disclaimer: The content of this statement may not express the views of all members of the Act Now: End AIDS coalition or our government partners.
For questions about this document please email anea@treatmentactiongroup.org.
1 https://www.nastad.org/sites/default/files/resources/docs/nastad_covid_rfi.pdf
2 https://www.ncsddc.org/resource/covid-19-and-the-state-of-the-std-field/
