2023 Poses Threats and Promises for Public Policy and Patient Advocates

Annually, Bill Arnold had a traditional “open” for the Hepatitis Education, Advocacy, and Leadership (HEAL) blog, now the Community Access National Network (CANN) blog. Those blogs were a mile marker in the landscape of advocacy. “Here’s where we are and here’s what CANN will be looking at in the coming year”. Largely, they were on point, and often set the tone for the upcoming year’s work while also reflecting on the previous year’s movement. Last year, we took a slightly different tact, needing to ensure our community, members, and stakeholders were “in the loop” on the changes the organization was going through. Bill’s death caused a change in leadership and the Omicron wave of the COVID-19 pandemic meant we were not yet sure of how things might look “operationally”, especially with regard to our national meetings and presentations, which had, prior to 2020, been in-person events.

In 2022, as we had in 2021, CANN held its Community Roundtable and National Monitoring Report, in partnership with HealthHIV, virtually, in no small part because the access virtual programing provides patients, advocates, and other stakeholders is critical to maintain. A challenge many advocacy organizations and even government agencies have faced, and will continue to face, is striking a balance between “Zoom fatigue” and ensuring participants have ready access to engaging, informative, educational programming and timely updates. 2023 will likely include more in-person events for a number of our partners and as we rejoice in seeing one another over meals and hugs and sometimes a…spirited discussion or two, we should also keep a mind toward ensuring access to the quality of these conversations with our community members who are less financially secure, who experience physical and emotional challenges which limit travel, and for our patient community which must be more mindful about respiratory illness outbreaks or waves which could threaten their health. As a culture and industry, we must ensure we do not lose the potential of the last few years in expanding access to advocacy, much less access to influence.

Parts of 2023 will include some…hangover from 2022. Indeed, much of the nature of effective advocacy means recognizing our work is perpetually reflective of the path laid in previous years and even decades. To that end, CANN encourages our audience to watch the continuation of the zombie court case known as Doe v CVS. This is a continuation of a case which was previously scheduled to be heard by the Supreme Court of the United States (SCOTUS) in December of 2021 but, by mutual consent of the parties, was pulled back from the high court. The 9th Circuit case now moving forward reflects many of the same claims of disability discrimination under the Affordable Care Act (ACA) the previous case held. Particularly, the case focuses on how CVS, as a pharmacy benefit manager, forces or heavily influences (read financial coercion) patients to use their mail-order pharmacy rather than a physical pharmacy location, necessarily denying patients the benefit of in-person medication counseling and risks the quality of certain medications because of being exposed to the elements through mail services. While the case is being brought by patients living with HIV, the application of the case and its outcome could affect any patient with a chronic condition which requires medication for management.

Similarly, we’ll be watching the outcome of Talevski, already heard by SCOTUS, yet without a decision as of this writing. The case focuses on Medicaid and the enforcement of rules states are subject to but, depending the ultimate outcome, may have impact well beyond Medicaid and into a whole swath of other federally regulated programs. The case centers on exactly who is allowed to initiate lawsuits to enforce regulations and the law as a whole. Do patients have a “fight of action” or is that exclusively held as a responsibility of the federal government? This might seem like an odd question to ask SOCTUS to decide but, by and large, the federal government relies very heavily on private citizens to bring lawsuits to courts to argue for enforcement actions. In those situations, the federal government steps in as “intervenors”, or third parties which may have a heavy interest or even standing in which to bring the suit in the first place. In this fashion, the feds can and do carefully select cases in which clarifying precedent or novel approaches might be “tested”. However, in this case, the Health and Hospital Corp of Marion County, Indiana, has asked SOCTUS to upend that entire history and declare that only the federal government may initiate a lawsuit seeking to enforce federal regulations against the entity…or any entity subject to federal regulations for that matter. This is akin to many cases heard by SCOTUS in an era from 1890 to 1937 known as the Lochner era. While the Lochner era generally focused on issues of labor rights and regulations, the attitude and rulings from SCOTUS at that time were generally very anti-government and anti-regulation. A majority conservative SOCTUS might seek to revive that sentiment through cases like Talevski. Just as was the case in the Lochner era, this type of shit would largely be detrimental to the “every man”, especially in areas of human and patient rights.

Speaking of…the Biden Administration is going to have its hands full in 2023 as states which have previously failed to pass anti-transgender legislation appear to be geared up to try again. Despite a ridiculously poor showing during the 2022 mid-term elections, which rode on “anti-woke” sentiments (read: anti-human rights and dignity) and “culture wars”, right-wing politicians are set to revive the very effort that turned a “red wave” into little more than trickle. Partners more focused on civil liberties will write plenty and work hard around the civil rights aspects of libraries being threatened. Another aspect of this very rise-of-the-Anita-Bryant-zombie is how hospitals and health care providers have been targets of both political attacks and criminal efforts to shutter access to care. And it’s not just trans kids they’re after. Several state efforts, including Florida’s Board of Medicine and Texas’ child welfare programs, have included administrative rule-making to target families and patients seeking care, regardless of age.

We also want to highlight the astounding work done by STAT’s Nicholas Florko on how the United States’ penal system has failed to reach its Constitutional and ethical obligations to provide care for incarcerated people living with Hepatitis C. In a series entitled Death Sentence, Florko follows the path of US prisons and their officials in denying live-saving, curative treatment to the people in their custody, effectively sentencing these patients to significant morbidity or, in some cases, death. US Courts have previously ruled things like budget constraints might be an allowable excuse for not providing care which would otherwise be required under the 8th Amendment. Allowing state lawmakers to abdicate their Constitutional obligations by not requiring coverage of curative direct acting agents is still a death sentence by neglect. The 8-part series is an absolute must read on how far behind the US court system is in meeting the demands of our Constitution and our conscience.

Lastly, China has abandoned its efforts to reach “zero-COVID” (joining much of the rest of the world on this policy issue). That doesn’t mean things are going to “return to normal”, either in terms of consumer goods logistics or global health. The Chinese government has not been as transparent as many of its partners desire in terms of its current outbreak or the potential for yet another debilitating variant being introduced into the global ecosystem. Keep an eye on developments there, including the tone of politicians who hold the greatest amount of influence and responsibility to ensuring we all enjoy a more diplomatic future with regard to infectious diseases. A lack of trust and transparency is at the core and center of every pandemic.