United States Capitol Building - Washington, DC.

How Comparative Law Can Counter Threats to the ‘Most Successful Global Health Program in Modern History’

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By Joelle Boxer

PEPFAR, the President’s Emergency Plan for AIDS Relief, is under threat. Some members of Congress are withholding reauthorization support while arguing, without evidence, that PEPFAR funds abortion.

This is untrue: U.S. law prohibits PEPFAR from funding abortion. That alone should resolve the current impasse and secure the program’s reauthorization. Should bad faith opponents require further reassurance, however, they need look no further than the local legal realities of the 25 countries and 3 regions where PEPFAR operates.

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Hundred dollar bills rolled up in a pill bottle

Reasonable Pricing Clauses: A First Step Toward Ensuring Taxpayers a Fair Return on their Public R&D Investment

The Petrie-Flom Center Staff Leave a comment

By Nikhil Chaudhry and Reshma Ramachandran

Earlier this month, the Department of Health and Human Services announced that it had successfully included a reasonable pricing provision in a $326M investment contract with Regeneron for development of a next generation monoclonal antibody therapy for COVID-19. This was the first time the Biden Administration had included such a provision as part of its research funding agreements with the private sector, demonstrating that it is indeed possible for the federal government to negotiate deals with pharmaceutical companies that ensure that products developed with public dollars are priced comparably to the global market.

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Siri, Apple's voice-activated digital assistant, tells iPhone user, "Go ahead, I'm listening," which also displays as text on the screen.

On Siri and Recognitive Violence

The Petrie-Flom Center Staff Leave a comment

By Joshua A. Halstead

As a disabled person who relies on speech recognition software to complete a range of daily writing tasks (from emails to book chapters), I am no stranger to the universe of voice assistants, having cut my teeth on Dragon Dictate in the ’90s.

Though I’m used to the software knowing my voice, that it now knows my location is uncanny. This discovery occurred on a morning stroll when Siri spelled “Urth Caffé” correctly, rather than, as was expected, scribing “earth café.” This is when I realized that my assistant had turned into a stalker.

In this short article, I argue that Apple’s decision to integrate user location data into Siri’s speech recognition system created a product that contributes to gentrification and could further marginalize disabled people.

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Hand with a red napkin washes the chalk board.

A European Cancer Survivors’ Right to be Forgotten?

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By Hannah van Kolfschooten and Mirko Faccioli

There are currently over 12 million cancer survivors in Europe. Due to improving cancer screening methods and medical treatment, this number is expected to grow every year. Former cancer patients often face multiple forms of discrimination throughout their lives. Many commercial companies make long-term cancer survivors “pay twice” – while having similar life expectancies as their peers, they are denied access to key services because of their former cancer status.

To combat this unfair practice, some European countries are establishing a “cancer survivors’ right to be forgotten,” also referred to as the “oncological right to be forgotten.” Italy’s parliament just passed a law to establish the right. Patients’ rights organizations and EU institutions are pushing for a “European cancer survivors’ right to be forgotten.” This post outlines the purpose of such a right and flags potential challenges in its adoption.

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Health visitor and a senior woman during home visit.

Caring for Patients with Serious Illness: Insights from Kristofer Smith

The Petrie-Flom Center Staff Leave a comment

Kristofer Smith, MD, MPP is the Chief Medical Officer of Landmark Heath, where he oversees efforts to establish a high-quality and clinically effective home-based medical care model for patients with serious illness.

We sat down with Dr. Smith to discuss his experience caring for patients with serious illness and developing programs to provide health care at home, among other topics. The following interview has been edited and condensed. Read More

the homepage of the PubMed website is seen on a computer screen through a magnifying glass.

On Searching for the Unknown with Unspeakable Names: Searching PubMed for Disability Research

The Petrie-Flom Center Staff Leave a comment

By P.F. Anderson and LaTeesa James

PubMed special queries are master search strategies on common, important, but challenging health topics, which are usually peer-reviewed. Disability certainly qualifies as a common, important health topic that is challenging to search – and yet, no PubMed special query exists for it. 

This oversight is concerning. Put simply, it’s important that disability as a topic is easily identifiable in the scholarly record. While there are specialized databases for the topic, such as NARIC’s REHABDATA, the global research community is most likely to begin with PubMed. Currently, structured vocabulary terms related to disability are scattered throughout PubMed’s medical subject heading (MeSH) trees, often without cross references to facilitate discovery, forcing discovery to largely depend on the unstructured language of whatever words were chosen by the authors to describe their research topics. This lack of consensus and consistency across professional disability terms, categories, and definitions contributes to a lack of comparability, discoverability, and access for disability data as well as research.  

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line drawing of computers, tablets, and televisions.

Autistic Screen Time: Swipe Left on Stigma

The Petrie-Flom Center Staff Leave a comment

By Maxfield Sparrow

I am an autistic person who has been using the internet as a social prosthetic device since 1983. I was born in 1967 and began therapy in 1972, so the iPad didn’t exist and the only screen time parents worried about was the five channels of broadcast television available twenty hours a day. TV was fine, but my real passion was books. I was hyperlexic and from a very early age I had an unquenchable thirst for written language. My obsession with reading was considered pathological, and adults took my books away to try to force me to socialize with other children instead.

It didn’t work. But it is sadly common that those of us with developmental disabilities are held to higher standards than everyone else. As children, once we are identified, everything about us is scrutinized. Well-meaning adults, fearing for our future, hold us to higher standards of everything from politeness to academic discipline to the age-appropriateness of our interests to the ways we move through the world. We’re not allowed to “get away with” the things non-disabled kids do every day.

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Puebla, Mexico - September 28, 2020: With green scarves, members of feminist collectives demonstrate in the streets of the Historic Center of Puebla to demand the legalization of abortion.

Sex Equality in #SeptiembreVerde: Examining the Mexican Supreme Court’s Abortion Decriminalization Decision

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By Joelle Boxer

Earlier this month, Mexico’s Supreme Court issued a ruling decriminalizing abortion nationwide, setting a powerful example in the global trend of abortion law liberalization, including on the grounds of sex equality.

Hailed as “incredible” by reproductive justice advocates, the decision will be most impactful in the 20 Mexican states where local laws still criminalize abortion, potentially removing access barriers for more than 42 million women.

This article will explain the origins of the case, what the decision holds, and what it says about sex equality.

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Cover image of Ashley Shew's book, Against Technoableism.

Symposium Introduction: Addressing Technoableism: Reforming Infrastructure and Disability Representation

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By Ashley Shew

Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement. 

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a man waves an intersex-inclusive progress pride flag in the wind on the sky.

Certainty and Uncertainty in Trans-Intersex Science Politics

The Petrie-Flom Center Staff Leave a comment

By Maayan Sudai

Joanna Wuest’s Born This Way: Science, Citizenship, and Inequality in the American LGBTQ+ Movement describes the evolution of the “born this way” framework through pivotal moments in the history of the LGBTQI+ movement.

A central theme of the book’s analysis is the role that “certainty” and “uncertainty” play in the legitimation of science-based policy regarding sexuality and gender issues. Uncertainty of what might happen has been pitted against LGBTQI+ reforms, from when conservative researchers and practitioners argued the exposure of young children to an openly gay guardian or schoolteacher could be harmful (p.92), to present-day attempts to leverage uncertainty to block trans access to sex-segregated bathrooms, prisons, and shelters (p.181).

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