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.
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.