Institutional Barriers Still Stand in the Way to Equity

On July 28, 2022, the World Health Organization (WHO) released new guidelines on the use of long-acting, injectable cabotegravir (branded as Apretude) as pre-exposure prophylaxis (PrEP), just ahead of the 24th International AIDS Conference (AIDS2022) in Montreal. On the same day, ViiV Healthcare announced a voluntary licensing agreement with Medicines Patent Pool in an effort to extend access to the medication to middle- and low-income countries, particularly sub-Saharan African countries.

These are very exciting developments as the innovative products (Cabenuva for the treatment of HIV and Apretude for the prevention of HIV) represented the most recent of biomedical interventions around HIV with the potential for dramatic changes for the better. Expanding options, allowing for patients to choose between a daily tablet or once-every-two-months provider administered injection, gives patients the choice to pick between highly effective regimens to suit their comfort and lifestyles. While that may sound like a sales pitch for a phone, it’s not – it’s the effort to make life-saving medications appealing and easy. Frankly, they should be.

But in the long fight to make these medications available, we should be reminded that “available” and “accessible” are two, very different things. The difference is big – so big – that it can be measured in the 4,000 new diagnoses a day and 650,000 AIDS-related illness deaths in 2021.

That gulf, the pit in your stomach reading that data, the silence at the end of the hope and joy you had reading those first two paragraphs – that’s the space between “available” and “accessible”.

In order to fully appreciate the extraordinary efforts to improve living with and life for people living with HIV, we must also fully appreciate the barriers to care patients face every day. From housing to transportation to stigma to food – clean water and food – patients have consistently been blamed by policymakers, both foreign and domestic, for failing a moment in which patients aren’t the ones with institutional power to change the circumstances of their journey to care.

A large portion of AIDS2022 is dedicated to highlighting these disparities, the specific policy mechanisms countries should consider implement* in order to create a more equitable world for all and to ultimately End the HIV Pandemic. From discussing discordances in criminal laws and public health best practices (sex work, harm reduction) to practical investments in education and health care systems to very direct conversations on how political opportunism finds readiness in villainizing people and communities highly affected by HIV, the International AIDS Conference is a dedication in love, spanning thousands of years of lived experiences and expertise. The lessons learned from the collaborative and sometimes confrontational efforts highlighted at this event are lessons we ultimately should also appreciate here, in the United States.

At home, though, the disconnect between federal authorization of innovative medical products and state-based policies to ensure access is the representation of that engulfing silence from earlier. Patients, especially low-income patients, are still struggling to realize the benefits and flexibilities of the biomedical innovations. Medicaid programs were slow to appreciate the need to cover Cabenuva and Apretude (some still don’t). A national coverage determination has not yet been made to ensure Medicare patients have access. And even if every last corner of these public payers covered these medications, private payers still maintain the power over a patient’s choice by simply refusing to pay for them – instead forcing patients to suck up whatever the payer determines is acceptable.

Of all the systemic and institutional barriers to care patients face domestically, payers remain some of the least regulated, least accountable, and most profitable – of the top 12 most profitable companies in the US, 3 are or own pharmacy benefit managers. Food, housing, transportation all take many, many layers of work to dig into. But changing what patients pay at the pharmacy counter, relieving that stress and making patients less fearful of having to choose between those necessities and their medications? That takes one layer, one set of actors, to be held accountable to everyone who pays them to stay in business – including and especially the United States government. Advocates would do well, as federal legislators prepare to go elbow deep in “drug pricing” legislation, to readily ask “lower prices for whom?” The difference in the answers can be measured as the difference between “available” and “accessible.”

*The strikethrough and italics is the author’s commentary on language used by politicized entities to urge necessary policy changes.