113 of the Nation’s Leading Patient Advocacy and Health Care Organizations Launch ‘Campaign to Protect Patient Privacy Rights’

Issue Joint Statement about the Need to Safeguard SUD Confidentiality

Many of the nation’s leading addiction treatment, recovery, health care and advocacy organizations today announced a new coordinated effort – the Campaign to Protect Patient Privacy Rights – to advocate for maintaining the confidentiality of substance use disorder (SUD) patients in the face of proposals to eradicate these essential rights.

The Campaign, which includes the Legal Action Center, the American Association for the Treatment of Opioid Dependence, AIDS United, Community Catalyst, Faces and Voices of Recovery, Facing Addiction, Harm Reduction Coalition, National Advocates for Pregnant Women, National Alliance for Medication Assisted Recovery, National Council on Alcoholism and Drug Dependence, and over 100 other patient and provider advocacy groups, has issued a set of principles to guide its advocacy and to help inform policymakers and the public on the critical issues at stake.

The federal SUD confidentiality rules, known as 42 C.F.R. Part 2 (“Part 2”), were established more than 40 years ago to ensure that people with a substance use disorder are not made more vulnerable to discriminatory practices and legal consequences as a result of seeking treatment. The rules prevent treatment providers from disclosing information about a patient’s substance use treatment without patient consent in most circumstances. Proposals to replace Part 2’s confidentiality requirements with HIPAA’s more relaxed standards would not sufficiently protect people seeking and receiving SUD treatment, and could expose patients to great harm.

Unlike most other medical illnesses, substance use disorders often have criminal and civil legal consequences. Part 2 provides safeguards for patients against potentially disastrous results of unauthorized disclosure. Unlike individuals with other illnesses or disabilities, SUD patients are vulnerable to arrest, prosecution, and incarceration. Additionally, many people with SUD are not protected by federal or state civil rights laws that protect people with disabilities from employment, housing and other types of discrimination. Loosened confidentiality protections for SUD patient records can not only discourage patients from seeking treatment, but also subjects them to the risk of experiencing severe negative consequences and discrimination.

“The confidentiality law is often the only shield between an individual in recovery and the many forms of discrimination that could irreparably damage their lives and future,” said Paul Samuels, President/Director of the Legal Action Center. “Unfortunately, there is a very real danger of serious negative consequences for people whose history of substance use disorder is disclosed without their explicit consent.”

The Executive Director of Faces and Voices of Recovery, Patty McCarthy Metcalf, adds: “Many of us would not have gone to treatment or accepted services if we thought that our information would have been shared with other entities without our permission. We would not have put our careers, reputation or families at risk of stigma and discrimination if we were not assured that information about our substance use disorder was safe and would only be shared with our consent.”

Mark Parrino, President of the American Association for the Treatment of Opioid Dependence echoes this concern: “In the midst of the worst opioid epidemic in our nation’s history, we cannot afford to have patients fearful of seeking treatment because they do not have faith that their confidentiality will be protected.”

The Campaign represents a coordinated effort among patient advocates, directly affected individuals, health care organizations, and treatment providers, to ensure that essential privacy protections for people with substance use disorder remain strong. In addition to working on policy advocacy, the Campaign will also educate providers and policy-makers about the importance of preserving 42 CFR Part 2 to protect people with substance use disorders, and the reasons why the HIPAA standard would not provide sufficient protection.

For more information and resources about Part 2, please visit the Legal Action Center’s website. To learn more about the Campaign to Protect Patient Privacy Rights or to find out how to get involved,  please email Deborah Reid, Senior Health Policy Attorney at the Legal Action Center.

Media Contact: Abigail Woodworth
Email: [email protected]
Phone: 212-243-1313

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