DOJ: ADA Protections Offered to People Living with Opioid Use Disorder

Every time something big comes up in the way of protections interpretations, I take a moment to recognize the incredible work done by the disability community. I also do my best to remind anyone who will listen the folks at the center of disability rights and protections have been laying the ground work for many of the policy issues for…well…ever. If we’re to build successful coalitions, it is our obligation to stand with one another both in our specified areas of interest and in alignment with those organizations that share the best interests of the communities we seek to represent. I was reminded again of how much we owe to disability advocates on April 5th, as the Department of Justice (DOJ) issued new guidance on protections for people living with opioid use disorder under the Americans with Disability Act (ADA).

Take a moment to read through the breadth of this guidance. It’s eight pages of gloriousness that builds on previously issued factsheets and settlements. What’s of particular note is the strength of language the guidance uses with regard to describing Title II discrimination, hinting the Department of Health and Human Services (HHS) and DOJ are gearing up to target state and local governments and their agency and court instruments for enforcement action, including family courts.

To be clear, the explicit language of the ADA prohibits the protections being applied to actual or perceived “active use of illegal” substances. However, people who use drugs seeking treatment or “rehabilitation”, regardless of modality (including medication assisted treatment), or those who have previously used drugs are protected under the ADA from having that history used against them by:

• any government entity;

• any private entity administering public services (like privatized jail systems); and

• any entity providing public accommodations (generally, any business open to the public and most employers)

The guidance specifically cites an example: “A town refuses to allow a treatment center for people with OUD to open after residents complained that they did not want ‘those kind of people’ in their area. The town may violate the ADA if its refusal is because of the residents’ hostility towards people with OUD.” This speaks to the long-held issue many programs have faced for decades, including zoning law adjustments and refusal of permits, for treatment facilities and half- and three-quarter-way houses to be established in neighborhoods. As the DOJ is still in talks with SafeHouse to establish a safe consumption site, a harm reduction facility in which people who inject drugs may receive sterile supplies or medical supervision with the explicit purpose to intervene in overdoses, reduce transmission of infectious diseases, and offer linkage to care, including recovery services. If treatment facilities are protected under the ADA, would treatment referral entities also be protected? Indeed, in paragraph 5 (five) of the document, the DOJ explicitly states “…an individual cannot be denied health services, or services provided in connection with drug rehabilitation, on the basis of that individual’s current illegal use of drugs…”.

This is a clear sign the Biden administration has decided that part of combating the country’s “Opioid Crisis” means combating social stigma by providing protections to people with substance use disorder. This is the rather blunt and litigious means of moving the needle on stigma associated with substance use, but when empathy fails, policy priorities must speak through litigation.

DOJ and other enforcement entities generally do not initiate investigations or enforcement actions on their own and are highly dependent on the public to file complaints. If you suspect you have been discriminated against on the basis of a perceived or actual disability and/or perceived or actual impacts to your daily living, you may file a complaint by clicking here.

2022: New Beginnings, New Changes

The Community Access National Network (CANN) ushers in a new beginning with the 2022 New Year, evidenced not only by the changing of the guard with our new President & CEO, but also with some important programmatic changes with our organization. We felt it important to share these changes with you.

Our weekly blog, previously branded as the HEAL Blog (Hepatitis Education, Advocacy & Leadership), is being repurposed to serve our broader mission “to define, promote, and improve access to healthcare services and supports for people living with HIV/AIDS and/or viral hepatitis through advocacy, education, and networking.” As such it is now the CANN Blog, and its areas of interest will focus on HIV/AIDS, viral hepatitis, substance use disorder, harm reduction, patient assistance programs (PAPs), Medicare, Medicaid, and the ongoing Covid-19 pandemic and its impact on public health. In keeping with the desire to monitor broader public health-related issues and appropriately engage stakeholders, our CANN Blog will be disseminated to a larger audience. Therefore, some of you may notice one more email in your inbox each Monday morning since we’re employing our general listserv to share the blog posts. It is our hope that you’ll deem the added email of value and thus maintain yourself on our listserv.

Additionally, our acclaimed HIV/HCV Co-Infection Watch will also be shared with our general listserv. But don’t worry, it only means one additional email each quarter! The HIV/HCV Co-Infection Watch offers a patient-centric informational portal serving three primary groups - patients, healthcare providers, and AIDS Service Organizations. The quarterly Watches are published in January, April, July, and October.

In 2022, our Groups will also be more active. Since 1996, our National ADAP Working Group (NAWG) has served as the cornerstone of CANN’s advocacy work on public policy. Whereas NAWG will continue to engage our HIV/AIDS stakeholders with monthly news updates, we will also convene periodic stakeholder meetings to discuss important issues facing the HIV community. Likewise, our Hepatitis Education, Advocacy & Leadership (HEAL) Group has served as an interactive national platform for the last decade on relevant issues facing people living with viral hepatitis. Periodic stakeholder meetings to discuss important issues facing the Hepatitis community will now complement the HEAL monthly newsletter. If you would like to join either the NAWG or HEAL listserv, then please do so using this link.

CANN will also launch its 340B Action Center this year. It is designed to provide patients with content-drive educational resources about the 340B Drug Discount Program and why the program matters to you. The importance of the 340B Program cannot be under-stated, and CANN remains committed to taking a balanced “money follows the patient” approach on the issues facing the program and advocating for needed reforms.

Finally, like most advocacy organizations, CANN is constantly evaluating whether it is safe (or not) to host in-person stakeholder meetings. Covid-19 has changed the advocacy landscape. Over the last two years our two signature meetings (Community Roundtable and Annual National Monitoring Report on HIV/HCV Co-Infection) have been hosted virtually, rather than in-person. CANN is taking a “wait and see” approach on how best to proceed in 2022 with these events. We will keep you apprised of our decision.

As we close the door on 2021 and open it for 2022, CANN looks forward to working with all of its community partners, industry partners, and you!

2021: A Year in Reflection

The end of 2021 is upon us and that makes this a timely opportunity to reflect on the work by the Community Access National Network (CANN). During an exceedingly busy news cycle, we have published fifty blogs (including this one) on a variety of topics ranging from the latest on policy and regulatory issues, as well as some personal perspectives. Our HIV-HCV Coinfection Watch and our Annual Monitoring Report tracked Hepatitis C (HCV) therapies covered under the State AIDS Drug Assistance Programs, Medicaid, Veterans Administration, as well as patient access via patient assistance programs, and other relevant news items affecting our patient community. We also conducted a community roundtable seeking to highlight the impacts of Covid-19 on public health programs aimed at addressing HIV, HCV, and substance use disorder (SUD).

Notably, CANN published the following six-part series designed to educate patients on various aspects of the 340B Drug Discount Program:

·        A Patient’s Guide to 340B: Why the Program Matters to You

·        A Patient’s Guide to 340B: Why Transparency Matters to You

·        A Patient’s Guide to 340B: Why Accountability Matters to You

·        A Patient’s Guide to 340B: Why the Decline in Charity Care Matters to You

·        A Patient’s Guide to 340B: Why the Middlemen Matters to You

·        A Patient’s Guide to 340B: Why Program Reform Matters to You

With Congress engaged in high-conflict communication, to abuse a euphemism, navigating public policy developments and pertinent issues to patients can be challenging. CANN remains committed to being an essential source of two-way communication, information, and education wherein patients write the narrative driving policy reforms and priorities. In this, we are ever grateful to the patients and caretakers who have engaged with us at every turn. Your stories matter and you are not alone in your experiences.

The diverse partnerships behind this work are critical to our success and as we end the year, we want to offer our gratitude to these essential partnerships, ranging from other patient advocacy organizations, public health associations, and industry partners.

The issues affecting our public health space of patient advocacy have not relented this year. Covid-19 has only emphasized the need to ensure these programs are effective and efficient while also highlighting the existing weaknesses and strengths of these programs. To be clear, the structural and pervasive drivers of health disparities have been named; racism, sexism, classism, ableism, and all other biases which reflect a moral justification for out ethical failings must be addressed in tandem with policy changes and adequate public health program funding in order for us to succeed in these fights for patient lives. Health equity cannot be meaningfully segregated from the policy mechanisms in which these disparities have survived in the face of another pandemic – when our collective awareness of these inequities and leverage to progress on these issues should have been their strongest and yet were not.

It’s with these things in mind, we want to leave you with the enduring sentiment that next year offers us yet another opportunity to approaches these challenges with fresh eyes and fresh ideas. We are indeed stronger together and we sincerely look forward to working with you all to move closer in realizing a world of greater access to care, fewer and smaller health disparities, and, ultimately, a more fair and loving environment in which to live our lives and raise our families.

Author’s note: I often end certain professional meetings with telling my colleagues “Love ya’ll”. It’s a sentiment I mean to depths of my soul. I am fortunate to work with some of the most amazing people in the world – folks who share an unbridled commitment to improving the lives of those around them. It’s from this same space I wish to offer each of you reading this a moment to breathe and the same open heartedness. I want to leave you all with a short story that has shaped me in more ways than I can count, The Perfect Heart, and an encouragement to tell someone you love them as soon as you can. May this next year be gentler with us all and find us giving away more pieces of our hearts.  

Community Roundtable Emphasizes Impacts of Covid-19

In late June, Community Access National Network hosted a virtual Community Roundtable on Covid-19’s Impacts on HIV, Viral Hepatitis, Sexually Transmitted Infections, and Substance Use Disorder. CANN’s policy consultant (yours truly) was joined by A. Toni Young, founder and executive director at Community Education Group, and Kenneth Westberry, senior manager of policy and government relations at the National Coalition of STD Directors, in discussing the wide-reaching impacts of the Covid-19 pandemic and subsequent public health emergency on the nation’s longest and most well-funded public health service providers…so far. Attendees included representatives from patient advocacy organizations, state and local health departments, clinical laboratories, hospitals, pharmseutical companies, and federally or state funded service providers from 20 states and the District of Columbia. The event was sponsored by ADAP Advocacy Association, ViiV Healthcare, Abbvie, Merck, and Janssen Pharmaceutical Companies of Johnson & Johnson.

Toni started off a whirl wind of information with making direct comparisons between the previous year’s overdose death rates and this year’s and emphasizing the plight of West Virginia by comparing the nation’s increases to the state’s. This opened the roundtable with a clear message that would ring through with every new data point: the pandemic’s impacts are not equal. Building upon the point made in a blog post earlier this year, Toni pointed to a stark decrease in HCV screening and, more pointedly, reviewed available data on HCV medication access – showing a decrease of 37-48% during the first few months of the public health emergency. She warned listeners not view initial lower incidence rates as optimistic, rather these findings should be viewed under a lens of a lack of access to screening and services. She further stressed the lack of SUD services accessed at the beginning of the pandemic resulting in alarming increases in injection drug use-related HIV diagnoses as a year over year trend with 2021 looking even more worrisome. Rounding out this segment of the roundtable, Toni cautioned attendees: we have good reason to believe screenings will not necessarily return to their pre-pandemic levels in a speedy fashion or without additional effort and funding.

I followed Toni’s dynamic presentation, picking up with the Centers for Disease Control and Prevention surveillance reports for 2015-2019 – reminding the audience federal level data often lags by two years and the CDC has already presented data for 2020 on fewer HIV tests being performed. This portion of the presentation highlighted disparities in HIV along geography, racial and ethnic lines, as well as sex assigned at birth. I needed to note: gender identity is not uniformly collected data in HIV surveillance. The CDC’s pre-exposure prophylaxis data was similarly…unfortunate. With right around 10% for Hispanic/Latino people identified as living at risk for HIV receiving PrEP services and medication in 2018 and just over 6% of African American/Black people living at risk for HIV receiving PrEP services and medication in the same year. Similarly, people assigned male at birth were more likely than people assigned female at birth to have access to PrEP. Looking to the pandemic, I cited two Kaiser Family Foundation reports one on the similar disparate impacts between HIV and Covid-19 among racial and ethnic communities compared to their white peers and the other on Covid-19’s impact on Ryan White service providers. The KFF reports showed service providers reporting an increase in patients without insurance or receiving Medicaid, some clinics reporting a decrease in patient retention and other reporting increases in patient retention, and clinics reporting a decrease in patient demand for HIV screenings and accessing PrEP services.

The final presenter, Kenneth Westberry, began by giving a brief overview of the state of STI’s as public programming: a steady increase year over year in reported STI incidence, a lack of significant funding increases in the last 15 years, and nearly 40% of clinics reporting a decrease in hours or closing entirely during the height of Covid-related restrictions. Of the particular burdens, Covid-19 brought state and local health departments, nearly 80% redeployed their staff from STI programming to Covid-19 programming, reducing capacity to manage STI caseloads, and facing an unprecedented lack of testing supplies as manufacturers also refocused on making Covid-19 tests. Kenneth then reviewed the findings of NCSD’s surveys seeking to evaluate the state of STI programs (phase I, phase II, and phase III) showing many health departments are still behind in terms of having enough staff to meet the needs of both Covid-19 as a public health emergency and regular STI programs.

Moving onto the nuts and bolts of the federal response to Covid-19, Kenneth highlighted the role of disease intervention specialists historically and in response to Covid-19, answering the “why” the Biden Administration’s change in stature toward the pandemic was critically necessary. Particularly, the American rescue Plan Act added $1.13 billion to expand and sustain current DIS and the President’s budget request includes an increase in funding for STI programs in addition to current spending levels.

The three panelists then spent a brief amount of time discussing the funding weaknesses exposed by Covid-19 diverting resources. In a particular “shot across the bow”, Toni stated “Health departments and appropriators have learned Ryan White dollars aren’t sacrosanct anymore. If the emergency is big enough, they can grab those monies,” urging advocates to keep on their toes and watch actions at the state and local as much as they do at the federal level. Each panelist also mentioned a need for greater collaboration between “silos” in order to reach the nation’s lofty public health goals with regard to HIV, HCV, STI’s, and SUD.

Panelists wrapped up by highlighting upcoming events for each organization, sharing resources, and once again thanking each other, attendees, and sponsors. The slide deck can be downloaded here.

Future events will be hosted to ensure we’re “tracking what’s on the ground” and connecting community partners with pertinent resources and information.

Emergency Alert: Substance Use Safety Net in Trouble

In April, the Biden Administration released a Statement of Drug Policy Priorities, outlining areas of improvement and policy priorities necessary to address the nation’s opioid epidemic. The statement was followed up in May by the Substance Abuse and Mental Health Services Administration (SAMHSA) announcing $3 billion in block grants to be distributed to states as emergency funding related to the American Rescue Plan Act, passed in March. The press release from SAMHSA highlighted preliminary data from the Centers of Disease Control and prevention (CDC) showing an estimated 90,000 overdose deaths in 2020, a 20,000 overdose death increase from 2019. Belying the nature of “emergency”, the SAMHSA announcement came 2 months after President Biden signed the American Rescue Plan Act, the release did not include a timeline for these block grants to be received by states or any indication from SAMHSA that guidance attached to use of these funds would be forth coming. That’s a problem for substance use treatment service providers who have been struggling to keep their doors open and services flowing throughout the COVID-19 public health emergency.

According to Michael Pickering, executive director for Regional Addiction Prevention, Inc. (a residential treatment program in Washington, D.C.), residential programs had to cut the available number of patients who could be housed at any given time, in order to help slow the spread of COVID-19 and reduce risks of clients and staff contracting the virus while restrictions were in place. That meant revenue necessary to operate shrunk dramatically. However, in order to maintain a minimum number of services, not many staff were reduced. Ultimately, these combined factors underscored a long-term issue as the agency faces potential closure: private and public payer rates for are so low that even the slightest emergency could be catastrophic for many substance use service providers.

Indeed, the Centers for Medicare and Medicaid Services (CMS) last adjusted addiction treatment services reimbursement rates for inflation in 2016 – meaning the “basement” for reimbursement hasn’t increased in 6 years while the rest of costs associated with providing care have grown. According to one entity, CODAC Behavioral Healthcare, reported reimbursement losses of nearly 40% from Medicaid on a 45-minute treatment session. The same report cited the American Society of Addiction Medicine (ASAM) as stating Medicaid as the largest payer of medication assisted treatment (MAT) for opioid use disorder, accounting for anywhere between 35 and 50% of services provided in the hardest hit states.

Tucked among Biden administration priorities in drug policy is a familiar statement regarding racial equity in health care. At the intersection of disparities in access to care and lack of health equity along racial lines is Medicaid’s low reimbursement rate. A study, included in the Statement, specifically highlighted how few private providers accept Medicaid for substance use treatment, opting instead for “cash-pay only” policies, resulting in a concentration of services provided to white people and leaving an unmet need among people of color, who have also been disproportionately impacted by the COVID-19 pandemic.

While the Biden administration also cited a need to recruit and retain medical providers and staffing talent to stigma, low reimbursement rates also translate to low compensation relative to other areas of health care and substance use services require more time to functionally provide for the needs of a client than other areas of health care. This leaves clinics and providers serving the public with an exceedingly high turn-over rate; CODAC cited a near 50% turnover rate for 2019. Just as with federally qualified health centers, compensation rates tied to clinic revenue (reimbursement rates) and grant awards that aren’t meaningfully increased, can’t compete in terms of compensation – the private sector, focused on profit margins and serving well-to-do clients, can readily recruit skilled talent from public service entities with more attractive compensation packages.

The administration’s priorities in drug policy are lofty and admirable, with a comprehensive map on moving forward. However, getting these resources – especially emergency funding - to entities providing critically necessary services seems to be a major barrier the administration doesn’t seem to have a good plan to deal with. Just as with the emergency rental assistance monies allocated under the American Rescue Plan, emergency monies are slow to reach substance use service providers in dire need, risking destabilizing an already weak safety net. Regional Addiction Prevention, Inc. provides just one example of an entire industry at risk, where funds are bottlenecked at the local agency distribution level. Earlier this month, advocacy organizations from around the country and service providers in D.C. wrote to the Mayor and City Council urging an expedited process to ensure emergency funds for these services were distributed in a more timely fashion.

The Biden administration can set all the goals in the world and even secure funds from Congress, but these goals won’t be met on a one-time funding or periodic “emergency” funding basis. The administration needs to provide funding distribution guidance commiserate with the urgency of keeping public addiction service providers afloat, ensure the country’s annual budget reflects these priorities, and increase Medicaid reimbursement rates to reflect these policy priorities.

Medicaid Access: HCV Medication Stalls

In November 2015, the Centers for Medicare and Medicaid Services (CMS) issued a stark warning to state managers of Medicaid programs regarding restrictive limits on accessing newly developed and emerging direct acting agents (DAAs) for the therapeutic and curative treatment of Hepatitis C. Since then, Harvard’s Center for Health Law and Policy Innovation (CHLPI) has steadily tracked the three most impactful methods of restricting access to DAAs in Medicaid programs: fibrosis restrictions, sobriety requirements, and prescribing provider requirements.

Briefly, fibrosis restrictions require a patient to have advanced in the amount of liver damage to a specific degree in order to qualify for care, sobriety requirements restrict access to DAAs based on a person’s self-attested stated or clinically documented sobriety, and prescribing provider requirements restrict recognition of “medical necessity” to that of a specialist or with consultation of specialist in order to receive coverage of a particular DAA. CHLPI’s most recent survey of Medicaid programs outlines progress of the policies of restriction by state. As of the date of the survey, 4 states maintain fibrosis restrictions, 13 states require some period of abstinence/sobriety with an additional 15 states requiring a patient to participate in some level of alcohol and/or drug screening and counseling, and 18 sates have some level of specialist prescriber requirements. Additionally, Community Access National Network’s quarterly HIV-HCV Coinfection Watch Report details which states cover which Hepatitis C therapies and DAAs under their Medicaid preferred drug lists (PDLs).

Of particular note, the 2015 CMS notice specifically highlight the practices of fibrosis stage and sobriety requirements as running counter to various provisions under Section 1927 of the Social Security Act. A 2020 legal review by CHLPI’s Phil Waters describes various case law and potential enforcement mechanisms in which to combat these restrictions, which may prove prescient for federal enforcement agencies and advocates alike. Of particular note, Waters argues the Americans with Disability Act (ADA) presents a “novel” approach in addressing the most caustic and immediate barrier to accessing DAAs by Medicaid recipients: sobriety restrictions/abstinence requirements. Waters notes opposition to this method of seeking enforcement may argue such policies “benefit” the class of persons affected by same. While 2018 guidance from the Department for Health and Human Services (HHS) recognizes substance use disorder as a disability, the same guidance specifically exempts people currently using illicit and illegal drugs from the protections afforded by the ADA.

As we referenced in a blog earlier this year, the Centers for Disease Control and Prevention (CDC) Hepatitis C surveillance data indicates an extraordinary increase in new HCV diagnoses relative to the opioid epidemic. Arguably, requiring an otherwise qualified Medicaid client to undergo additional, non-emergency treatment or engage in non-medical activities in order to gain coverage of a live saving therapy is necessarily discriminatory. After all, a particular Medicaid pharmacy and therapeutics committee cannot evaluate the degree of limitations a person’s experience with substance use disorder causes and imposing additional requirements that specifically target this particular is counter to best practices. Indeed, requiring a person to “get clean” before receiving life-saving medical care is the exact opposite of managing substance use recovery. Relieving pressures of medical need, housing, and other negative pressures related to determinants of health are what set people up for success in combating substance use.

In order for the Biden administration to fulfill its promises with regard to combating the opioid epidemic, for states to fulfill their responsibilities under the National Viral Hepatitis Strategy, and to meaningfully address the intersection of these syndemics, federal agencies tasked with enforcement of these rules and Medicaid directors should consult and act in alignment with advocates with lived experience and best practices in combating both the opioid epidemic and resulting infectious disease outbreaks and diagnosis, including HIV and Hepatitis C. Just as with strategic, culturally competent approaches to combatting HIV and STIs focus on sex-positive education and access to resources, including prevention and treatment interventions, barrier reduction is critically necessary in order to succeed in this fight. As it stands, Medicaid programs present one of the best opportunities to ensure and enact meaningful access to care in an effort to eliminate Hepatitis C. These access limiting policies also present the biggest barriers to achieving that goal.

Global & National Perspectives on HIV & HCV Co-Infection

On April 26, UNAIDS issued a report briefly detailing the state of HIV and Hepatitis deaths, globally, taking particular note of the issue of coinfection among people who inject drugs. Here in the United States, multiple jurisdictions have declared new HIV and ongoing Hepatitis C outbreaks, all combined with a surge in overdose deaths.

Domestically, federal public health initiatives have long sought to understand and address intersections of these issues, offer guidance, and shifted – albeit slowly – to understand HIV, HCV, and SUD exist as syndemics. And I want to talk about this language.

Syndemic, in general, means two or more linked health problems, interacting synergistically, and contributing to the disease burden of a given population; operating in a fashion that feed one another. To prevent or treat a syndemic, entities must not only treat each health problem but also the social ills that bridge these health problems.

This distinction is important – if we are to meet any of our public health goals on any of these, we need expertise, advocates, and structural support that both address the singular nature of each and the intersections, un-siloed from one another. Unique expertise in designing solutions is as valuable and necessary as expertise with the vision to see the whole system.

As we move through the COVID-19 pandemic, well-publicized discussion on the conflicts between national strategies and local actions mirrors fights patient and policy advocates have been fighting for four decades and continue to fight today. Even as we’ve made progress in ensuring direct acting agents (DAAs) are included in AIDS Drug Assistance Program (ADAP) formularies, at least one state has set an unchallenged precedent of denying this basic care to incarcerated people based on budgets and the Democratic mayor of the city with the “most concerning” HIV outbreak in the nation has back tracked on commitments to work with local public health experts.

This quarter’s HIV-HCV Coinfection Watch Report highlights some progress in syndemic-oriented policy changes and some more…unfortunate changes. While the American Rescue Plan, passed earlier this year, provides for more funding to address state budgets harmed by COVID-19 related revenue decreases, a few states have instituted – and currently maintain – restricted services. For example, while Georgia’s ADAP maintains DAAs on the formulary, payment for same is halted due to funding and Texas’s ADAP has removed all HCV medications, except one DAA from the formulary. Positive notes from earlier this year include Kentucky’s Medicaid program moving to a universal preferred drug list (PDL).

Of the space that has the greatest amount of room to progress and needing nuanced advocacy changes is harm reduction policies. Well-established federal policy and laws only reach so far if state and local laws act in direct opposition to those model positions or even merely lack the funding to establish comprehensive programs. One such space is the near universal adoption of “Good Samaritan Laws”, wherein, generally speaking, if a person, regardless of capacity, does their level best to help another, they cannot be held liable. However, several states have amended their “Good Samaritan Laws” or criminal codes to remove that liability protection from people who distribute illicit substances – disincentivizing reporting of overdose incidents and calling for medical help as they happen. Along the same lines, doctor shopping laws are aimed at preventing patients from seeking multiple prescriptions or seeking multiple providers if one is unsatisfied with their care. However, many states rely upon “lock-out” programs administered by insurance providers or managed care plans to implement under the guise of preventing “drug seeking behavior”. As Alison Gaye stated in a recent presentation to Louisiana’s Commission on HIV, AIDS, and Hepatitis C Education, Prevention, and Treatment, “drug seeking behavior often looks like care seeking behavior, subject to the personal biases of the examining provider”.

Harm reduction policies are in dire need to evolve and delve into the difficult nuanced spaces currently unaddressed if we’re to meaningfully work to end the syndemics of HIV and HCV. Far, far too often the solution found by policy makers in addressing public health needs has been to incarcerate those among us who need help. Driven by stigma, whether the issue is HIV criminalization or lack of access to standard HCV care or refusing adequate insurance coverage for recovery programs, shoving people into prisons has not served this country well on any front.

As we step into the next phase of our advocacy, evaluating existing programs, practices, and priorities cannot include a carceral mindset if we are to effectively reduce the harm caused by these syndemics and our past policies.

Checking-In: 100 Days of the Biden Administration

Advocates in public health and addressing HIV, viral hepatitis, and substance use disorder will affirmatively tell anyone the race to win these fights is a marathon, not a sprint. Globally, despite the devastation, COVID-19 is likely to be much the same with most experts anticipating COVID-19 to become endemic for a variety of reasons. And while every administration takes extraordinary efforts to brand their term with lofty promises of what “starts” in the first 100 days of a presidency, the Biden administration is making some tentative progress in some of those named goals.

Maintaining the brand that arguably helped him win the 2020 general election, Biden’s press team has focused on the sympathetic messaging while delivering policy appeals. One remarkable example likely to please disability and care giver advocates is Biden’s commitment to include an expansion of community and home-based services and better pay, benefits, and the right to unionize in the American Jobs Plan. Indeed, Biden’s infrastructure plan goes far outside of more traditional notions of “infrastructure” and seeks to initiate or expand several initiatives directly addressing to the gaps COVID-19 has highlighted with idea that infrastructure is the economic ecosystem supporting the country, regardless of industry. All of this is on the back of Biden’s American Rescue Plan, which expanded subsidies established by the Affordable Care Act and moves like recently announced renewed funding for Marketplace Navigators for 2022, extension of a universal school lunch program, and expansion of syringe services funding, among others.

The administration detailed further in the President’s Discretionary Budget Request for Fiscal Year 2022, priorities in further spending, namely requesting additional funding for the Ending the HIV Epidemic, reforms to the criminal justice system related to racial inequities and substance use treatment for incarcerated persons, addressing the opioid epidemic with – as some advocates have called – a “reformist” mindset rather than a penalty mindset. While these efforts are a solid move in the right direction and arguably a good down payment on Biden’s campaign promises, they do fall short of some of the funding goals advocates have long sought. And that’s just the beginning of the problems in finding the money to meet those lofty goals. For example, the United States is facing a new height to the overdose crisis and advocates have long argued to meaningfully tackle this epidemic funding needs to answer to the tune of $125 billion. Even if the president were to get his wish list funding of $10.7 billion in addition to the $4 billion provided for in the ARP, this still falls incredibly short of that advocate driven funding goal.

Much of the Biden administration’s priorities are likely to find similar fates and advocates should be prepared to both take their wins and lick their wounds. COVID-19’s havoc isn’t the only thing standing in the way of progress. With the exceptionally narrow divide in the House and Senate, the man seemingly wielding the power of majority leader, Senator Joe Manchin’s dedication to maintaining the filibuster, Democrats have an uphill battle in helping their party deliver on the promises sold to the country. Whether the issue is Nancy Pelosi’s (D-CA) desire to maintain ACA subsidy expansion or an entirely opaque drug pricing policy overhaul or expanding the age eligibility of Medicare, Democrats have promised to go big and if they don’t, they can very likely look forward to “going home”, either in the midterms or 2024.

Meanwhile, COVID-19 has very likely pared back minimal gains made in the South with regard to fighting the HIV epidemic in the United States, HIV and STI health care workers are burning out at extraordinary rates due to having to pull double duty for the last year, studies are finally digging into the hepatitis and HIV related health disparities among transgender people, and every other issue of health equity prior to pandemic has lost ground. Biden’s Health Equity Taskforce should absolutely take into consideration the nuances of emerging data on these existing disparities and advocates should seize this moment and pathway provided by engaging the taskforce on addressing these issues. After all, we’ve argued all along COVID-19 is merely thriving in these long neglected communities and it’s not unique for COVID-19 manifest disparate impacts among marginalized peoples, every other epidemic has.

It’s a marathon, not a sprint.

The Most Meaningful Public Health Intervention: Housing

A note on the language used in this article: Some housing advocates reference a difference between “homelessness” and “houselessness” with exceptional, nuanced conversations on individual experiences with housing instability, connection to community, and personal autonomy. While some advocates may opt to consider a frame of “home is where the heart is” as an issue of empowerment, I, as an author and advocate, use these distinctions because of well-established links between housing instability and uncertainty in situations of domestic violence. A roof does not necessarily a “home” make. For the stakeholder targets of this blog, the link between intimate partner violence/domestic violence and HIV is so notable, the Department of Housing and Urban Development has recently announced funding opportunities for joint demonstration projects between HOPWA and VAWA (Housing Opportunities for People with AIDS and the Violence Against Women Act, respectively).

For 30 years, people living with HIV have advocated “housing is health (care)” religiously. A drumbeat of nearly every action, the inevitable topic of any roundtable or meeting, even if housing isn’t an agenda item – or especially if housing isn’t an agenda item. Arguably, when it comes to issues of “social” Justice and policies impacting the notion of equity, outpacing even health care is housing. Housing is the lone sustainable investment any person or family in the United States can make and, generally, expect to last well beyond their own time. Housing is the basis of both defeating and maintaining systems of inequity and oppression. Housing is such a significant factor in individual and collective outcomes it had its own carve out, separate and apart from the Ryan White Care Act, via the program known as Housing Opportunities for People with AIDS.

Indeed, the housing’s impact on health care is so exceptional, in 2019, the American Medical Association built upon limited calls to improve identification access for people experiencing houselessness and expanded their policy position for more comprehensive and collaborative resources aimed to bring care to this population and called for decriminalizing houselessness. In the same year, the Department of Housing and Urban Development’s annual “point in time” data estimated about 568,000 people were experiencing houselessness on any given night in the United States, a near 10% increase of “unsheltered persons” from the prior year.

Late last month, the University of Bristol published in The Lancet a systemic review and meta-analysis of housing instability and houselessness finding among people who inject drugs (PWID), recent houselessness and housing instability were associated with a 55% and 65% increase in HIV and HCV acquisition, respectively. Additional findings include of the global 15.6 million PWID, over 1 in 6 have acquired HIV and over half have acquired HCV at some point and an astounding estimation that half of PWID in North America actively experiencing houselessness or housing instability.

None of the studies included data collect prior to the start of the COVID-19 pandemic. While several states near immediately began introducing short-term eviction moratoriums and the CARES Act provided for federally backed mortgage holders to seek forbearance or deferment, these protections were short-lived, with many states looking toward the federal government for guidance. As with many issues, the summer of 2020 brought the country little comfort due to a lack of cohesive and coordinated public health response to the emergency. A paper published by housing heavy-weight, Emily Benfer, and HIV champion, Gregg Gonsalves, among others, found this failure to uphold and maintain meaningful and enforceable state-based eviction moratoriums contributed to racial health inequity and cited research finding that lifting moratoriums prematurely, triggering displacement, is associated with an additional 10,700 preventable COVID-19 deaths and 433,700 excess cases. In fact, an organization Benfer serves with, Eviction Lab, rates nearly every state in the country as “one star” in terms of housing protections for renters.

Under this frame, tens of millions of people in the United States are at extraordinary risk of contracting COVID-19. Which is part of why the Centers of Disease Control attempted to flex some public health muscle by issuing an eviction moratorium for public health purposes in October, 2020. Like with other investments made in the fight against COVID, the move was bittersweet for public health advocates at the intersection of housing and HIV, HCV, and SUD syndemics – where was this before now?

“Among the Biden administration’s first priorities is the advancement of racial equity and support for underserved communities,” Benfer said. “This requires redress of the structural and systemic discrimination in housing. As an immediate measure, the federal government should bolster the nationwide moratorium on evictions to apply to all stages of eviction, all forms of eviction, and all renters who face housing instability. At the same time, to prevent an avalanche of evictions and protect small property owners from harm once moratoria lapse, policy makers must provide the rental assistance necessary to address the accumulating back rent and sustain renters, state and local governments, and the housing market—and direct it to the communities at the greatest risk of housing instability.”

“Preventing COVID-19 eviction alone could save the U.S. upwards of $129 billion in social and health care costs associated with homelessness,” Benfer added.

However, the CDC’s moratorium is on shaky ground and implementation/access is not automatic – those seeking to use this protection most pro-actively notify their landlords and express intent to seek cover of the moratorium in eviction court. Several states and localities have not evenly implemented the moratorium or setting up “eviction kiosks” to expedite the process, because so many cases were in que, and some going so far as to list children as defendants in eviction actions. Which, according to Benfer, is not an uncommon occurrence. And due to the lack of protections for tenants and outdated credit reporting associated with eviction judgements, these legal actions can and often do follow people for at least a decade, compounding barriers to housing and drastically increasing the risk of houselessness. Because state-based protections have ended, Texas is allowing evictions to resume and the 6th Circuit Court of Appeals has recently allowed a challenge to the authority expressed by the CDC for the moratorium to move forward, even as some landlords are openly exploiting loopholes in the moratorium.

Landlords aren’t the only abusive persons seeking to take advantage of weaknesses in our housing protections. An unfortunate side-effect of the moratorium actions and our lack of investment in ensuring adequate resources for people experiencing intimate partner violence is perpetrators exploited stay-at-home orders and survivors, who are already at exceptional risk of housing instability, with an estimated 26% increase in domestic violence abuse calls made in some cities across the US during the strictest of those orders.

Additionally, with more people facing a lack of houselessness, even more are now at risk for “mobile homelessness” – or a lack of car to sleep in – an issue which may be masking just how many people are experiencing houselessness and housing instability, due to the design of some point in time surveys are conducted. And with an estimated 49% increase in chronic homelessness expected as a result of COVID-19 over the next 4 years, the potential exacerbation of the existing housing crisis in the US may well likely become an even larger, permanent feature without extraordinary action from all levels of government and, or even especially, private stakeholders. To put this figure into context, this would twice as much homelessness as was caused by the 2008 housing recession.

In The American Eviction Crisis, Explained, Benfer suggests there’s some basic policy moves to be made for longer-term successes:

“In the long term, federal, state, and local policymakers must reform the housing market in a way that provides equal access to housing, thriving communities, and areas of opportunity. Rental subsidies, new construction or rehabilitation, home ownership, and investment in long ignored communities would increase long-term affordable housing. Government-Sponsored Enterprises (GSEs) must remedy the current market conditions that can be traced to racially discriminatory lending policies. This means GSEs must address disparities in asset accumulation and the persistence of discrimination in mortgage lending and the siting of homes.

Where eviction is absolutely necessary, the eviction system itself must be reformed. Evidence-based interventions, such as providing a right to counsel, diversion programs, ‘just cause’ and ‘clean hands’ policies, as well as altering the eviction process, and sealing or redacting identifying information from eviction records, can prevent or mitigate the harm of eviction.”

That long-term investment is well past-due in addressing the needs of people living with and affected by HIV, HCV, and substance use disorder.

Benfer added, “Eviction prevention and the right to safe and decent housing must be the priority. As President Biden said while signing executive orders directed at ending housing discrimination: ‘Housing is a right in America, and homeownership is an essential tool to wealth creation and to be passed down to generations.’ It’s time the U.S. fulfilled the promises of the 1944 Economic Bill of Rights, which includes a right to a decent home, and the 1949 Housing Act that set the national housing goal: ‘the realization as soon as feasible of the goal of a decent home and a suitable living environment for every American family.’ Ultimately, our policies and budgets reflect our humanity and morality as a nation, and nothing could justify the continued denial of basic human needs and access to opportunity. If we are ever to call our society humane or just, we must finally redress housing disparities and discrimination and secure every American’s right to a safe and decent home.”

For far too long, housing as been placed on a shelf as an “unreachable” necessity in actionable advocacy. We cannot afford to “kick this can down the road” any longer. We’ve long known housing is one of the most effective interventions in prevention and in patient care. The oft-touted “it’s too expensive” excuse has manifested a broken dam with lives sifting through the cracks. We already pay for housing for PWID, it’s just most often manifested in the form of imprisonment. A far more meaningful investment in a person’s recovery and success, regardless of recovery, and in community health and in Ending the HIV Epidemic and in ending violence against women and interrupting cycles of generational poverty and answering our most sacred, moral promise and…and…and… would be to address the issue squarely: it’s time to invest in housing.