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!
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.
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.