ACLU Sponsors “Don’t Cap Our Care” Rally to Save Medicaid

WASHINGTON – The American Civil Liberties Union, the Autistic Self Advocacy Network (ASAN), and 71 other disability rights, civil rights, and public health organizations sent a letter to Secretary of Health and Human Services Robert F. Kennedy, Jr. today raising significant concerns with the National Institutes of Health’s (NIH) proposal to create a national autism “registry.” The registry was detailed during an April 21 presentation by NIH Director Jay Bhattacharya, which he described as a “real-world data platform” for “developing national disease registries, including a new one for autism.” The Department of Health and Human Services (HHS) has since claimed it is not creating an “autism registry,” but the department has failed to engage with autistic people and advocates, exacerbating the lack of clarity. “Instead of engaging with the communities this proposal would impact most, federal health agencies have taken every opportunity to shut disabled and autistic people out of the conversation, leaving unanswered questions, a sense of alarm, and deepening mistrust,” said Vania Leveille, ACLU senior legislative counsel. “Trust in federal health data requires affirmative, good faith engagement with autistic people, appropriate safeguards for privacy, and ensuring any proposal helps – not hurts – the communities impacted.” The letter outlines the many unanswered questions left by NIH’s data platform proposal, including what data it will collect, what sources it will rely on, how it will anonymize and secure the data. It also highlights the increased risk of surveillance, stigmatization, and marginalization from data collection, particularly for disabled people – who have a long and troubled history with government efforts to find and track disability for the purpose of eliminating it. “It’s no secret that this proposal has created a lot of fear and confusion in the autistic community.” said Colin Killick, executive director of the Autistic Self Advocacy Network. “We continue to advocate and support research into autism that autistic people want conducted, but it is critical that autistic people’s private data not be shared without our consent. We hope the administration answers our questions to shine light on how autistic people and our rights will be protected.” The letter also establishes three key steps NIH and HHS must take to establish trust in its proposed data platform: Meaningful communication with autistic people and advocates; fundamental privacy safeguards to prevent misuse and abuse; and ensuring the data platform advances the well-being of autistic people, people with disabilities, and the public health while minimizing potential harms. The letter is here: https://www.aclu.org/documents/letter-to-hhs-secretary-robert-f-kennedy-jr-on-concerns-with-proposed-autism-registry

PHILADELPHIA – The American Civil Liberties Union, the Pennsylvania Institutional Law Project, and the ACLU of Pennsylvania have filed their opening brief in the Third Circuit Court of Appeals seeking to reverse the dismissal of a case challenging the deprival of medication for opioid use disorder (MOUD) in the Pennsylvania Department of Corrections. The groups represent Jonathan DiFraia, who was forced to stop taking life-saving medication while he was incarcerated because he received two disciplinary charges. The deprival was not based on DiFraia’s medical needs, but entirely on a non-medical rationale. As a result, DiFraia suffered painful withdrawal symptoms and his mental and physical health deteriorated. Studies show that people who are forcibly taken off of their MOUD face much higher risks of relapse, overdose, and death. “I was locked up because I have a chronic disease, and they refused to provide me with treatment because they don’t understand drug addiction. I am terrified that the same thing could happen to me again, and I’ll be forced to go without treatment,” said Mr. DiFraia. After being taken off of his MOUD, DiFraia asked for his medication to be reinstated. After the request was denied, he sued, asking a federal district court to enforce his rights under the Americans with Disabilities Act (ADA) and the Eighth Amendment. His complaint was dismissed by the trial court, but as the ACLU and partners argue in the brief, the court erred in that decision. “Medication for opioid use disorder is essential and lifesaving. It would be unimaginable for a person with diabetes to be forcibly removed from their insulin treatment, yet that is exactly what happened to Mr. DiFraia. Medications for opioid use disorder need to be available to everyone who needs them—both inside jails and prisons, and in the community,” said Joseph Longley, staff attorney with the ACLU Disability Rights Program. The brief argues that DiFraia properly lodged allegations against the Pennsylvania Department of Corrections for violating his rights under the Americans with Disabilities Act. Yet the district court did not address the substance of DiFraia’s claims, instead relying on the fact that he had only named the defendants in their individual capacities rather than their official capacities. “Far too often, jails and prisons refuse to recognize that OUD is a chronic disease. Incarcerated people with OUD have the same right to medical care as those with all other chronic diseases. This includes the right not to have medical care taken away as punishment,” said Sarah Bellos, staff attorney with the Pennsylvania Institutional Law Project. Likewise, the brief highlights DiFraia’s claim under the Eighth Amendment’s prohibition on cruel and unusual punishment. The district court also dismissed this claim, suggesting that DiFraia must prove that the officials who deprived him of medical treatment did so in order to cause him pain or harm. This is directly contrary to longstanding Supreme Court precedent.

We’ve been here before. Work requirements only cut care, nothing else.