Advocacy in 2021…and Beyond
The last four years seem to have passed in bit of blur. The events in public health and the related healthcare advocacy world have been driven by the fall-out from dysfunctional political chaos. The growing political divisions that prevented compromise, and thereby any progress on resolving overarching problems in our national life, have forced the Community Access National Network (like most national nonprofit organizations) to re-evaluate its approach to patient advocacy. In fact, democracy itself seems to look rather beaten up, even perhaps slightly damaged.
The advocacy priority landscape has changed in the last three decades that CANN has been a part of it, not to mention the almost four decades that I have spent in this field, personally. The mission of access to care and treatment in the HIV and viral hepatitis space for all regardless of their socio-economic capabilities clearly remain, but the world that started with no tools and no policies has expanded into a veritable constellation of potential policy changes, treatment improvements, and technological tools with which to work. The possibilities for improvement are a far cry from what was available in 1985.
Clearly, some advocacy priorities and tactics have evolved over time. HIV/AIDS is mainstreamed and routine even, close to “normal” if measured by expected life expectancy. Daily advocacy commitments for many individuals have been superseded by the ability to live a normal life. Remaining holes in the HIV/AIDS “safety net” are often local issues, which require local advocacy actions to correct.
As recent polling has shown us, crystal balls do not guarantee accurate predictions, but I think some areas bear watching. They include:
The Biden-Harris Administration shows signs of serious policy work. Most are likely to be issues we would support, such as improvements in the Affordable Care Act to cover a bigger piece of the currently uninsured U.S. population. It will be quite the contrast from what we have witnessed since January 2017.
Issues around changes in the 340B drug discount program, which might impact access to care for the HIV-positive (and other) demographics.
Changes in various state Medicaid eligibility levels, which can be a major factor in access to care and treatment for the uninsured.
Ongoing work will continue to be needed on issues like HIV-criminalization, health-related stigma, and the myriad phobias and bigotries circulating about drug additions, nontraditional sexual identity, racial and ethnic communities.
Importation safety for prescription drugs not now part of our FDA oversight and supply chain distribution safety oversights.
The costs of prescription drugs, most importantly to our HIV populations, in terms of insuring that out-of-pocket costs, deductibles, tier pricing and similar marketing ploys do not result in exceeding the ability of the patient to pay – regardless of their income level – thus leaving the medication on the pharmacy shelf.
All of the above points (and many others) will be in play in the background (and likely foreground) circulation as an incoming President-Elect Biden, Vice-President-Elect Harris, and a new Congress take office in January 2021. All in the context of damage from COVID-19 to the body politic and renewed human rights focus especially in the context of further defining the rights of racial, ethnic, cultural, religious, geographic, gender, sexual identity, religious desires for inclusion, diversity, economic equality. Our hope is we can collectively achieve a better state of fairness, equality and liberty. In short – the promise of “the American Dream”, our founders tried their best to articulate.
The ongoing need for civil discourse, actually policy changes and improvement is likely to be quite strong, which might actually predict substantive policy changes, political compromise, and a desire to rectify past errors that can no longer be ignored.
The goals of advocacy and education will be as important as ever in educating our political leaders at levels from local towns all the up through our national leadership in Washington, where there will be many new faces and new staffs. Firstly, to ensure that the folks we endeavor to speak for do not lose the hard-won gains of the last three decades, but also that their voices are heard in the debates and discussions that we hope will result in productive changes in policies at all levels of government.
As with every organization, change is inevitable. CANN has already started to make some changes in preparation for January 20th, when our country can collectively turn the page. As evidenced by the launch of our new microsite as the repository of information for our acclaimed HIV/HCV Co-Infection Watch, we will be building upon the good work done in this area over the last five years under the stewardship of our policy consultant, Marcus J. Hopkins. And Marcus, thank you for all of your hard work!
In anticipation of the issues surrounding the 340B drug discount program resurfacing in the next Congress, CANN welcomes its new policy consultant, Jen Laws. Jen’s community level knowledge about 340B’s impact on Ryan White providers and engaging patients on strategic communications and data analysis will play a central role in our work on HIV/HCV co-infection moving forward. And Jen, welcome aboard!
As we have since 1996, CANN hopes to continue as a constructive voice in the multiple process we’ll face in the next four years. Advocacy and education activities in person, by organizations, in multiple coalitions will be as important as they have been for the last three decades – perhaps even MORE important – as the cheeseboard of political life now has more movable pieces than ever and specific policy changes affect many different stakeholders.
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Disclaimer: HIV-HCV Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HIV-HCV Blogs might be graphic due to the nature of the issues being addressed in it.
