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The Coalition Co-Plaintiff Statement: Lawsuit Filed in U.S. District Court, April 2003

The National Coalition of Mental Health Professionals and Consumers, Inc, has concluded that the Federal Medical Privacy Rule modifications (HIPAA amendments) which were finalized October 15, 2002, by the U.S. Department of Health and Human Services, have already contributed to incalculable harm to all in our nation by the elimination of privacy rights and protections.

Assaults on privacy rights erect more barriers to the access to health care, create more threats of stigma and more fears about jobs, about future employability and insurability, about credit card, loan and mortgage eligibility, and on and on. Only the wealthy could afford the private payment for their health care, which might afford them privacy about their own health history and their family health history. Only full privacy allows for the timely access to care and the full disclosure to health care professionals that can lead to optimal care. This is glaringly and tragically seen in the most stigmatized areas of health care – in health care for mental illnesses, for substance abuse disorders and for emotional and family psychological disorders.

These HIPAA Privacy Rule changes cause irreversible harm – to prevention, to early intervention, and to assessment and treatment. Ample survey and professional research findings exist that demonstrate that significant percentages of the American public have already taken extraordinary measures to protect their privacy and avoid embarrassment, stigmatization and discrimination: people withhold information from their health care practitioners; patients provide inaccurate information; people “doctor-hop” to avoid a consolidated medical record; patients and family pay out-of-pocket for care that is covered by insurance; and, people avoid care completely. These methods are posing tremendous risks to public health, as well as to these people, who are protecting their privacy in the only ways they can. Due to even greater privacy concerns and fears amongst the American public, this avoidance can only increase under these new regulations.

Regulations and policies, which serve to empower patients - by genuinely giving them more control over their care, by giving them more control over when and how their personal health information is disclosed and used, and recourse to investigation and redress for discrimination and harm – all will support the development and the restoration of mental health. This current HHS Privacy Rule achieves just the opposite – it disempowers everyone, it sacrifices true privacy protections of the people, it grants control over all personal health information to the federal government and to the health care industry. Helplessness, loss of hope and apathy as citizen-individuals and members of families, and of communities with the common good collectively in mind, are well known contributors to poor mental health, poor job and school performance, to substance abuse, to delinquency and crime, as well as other chronic societal ills.

These privacy/empowerment losses are profoundly undermining of individual and family integrity, of parental authority in their children’s lives and futures. The Rule provisions are profoundly destructive to healthy child and adolescent development, and to healthy maturing in adulthood. Real privacy protection means that any consumer can disclose highly personal information with trusted professionals chosen by that patient. This trust is predicated upon knowing that those chosen professionals will be steadfastly safeguarding those disclosures, essentially forever. This is no longer the case under this Rule. And we have seen the steady erosion of the ethics of health care professionals, under the increasing demands of the Information Age – precisely one development which Congress, in its wisdom, intended to reverse, by assuring an even higher floor of federal regulations, focusing especially on electronic data collection, storage and retrieval risks, in the original HIPAA enactment.

Our nation is already in danger of states enacting legislation to make state public health laws conform to these Federal standards – this destructive elimination of privacy protections for all of us. Thus, we cannot rely on more stringent state standards- where they exist – to protect us. This comes about because of powerful industry pressures and the overwhelming demands on failing health care delivery systems. “Administrative simplification,” “paperwork reduction,” – “Efficiency” – become the attractive lures in system justifications. Hundreds of thousands of commercial interests already profit and will profit further by “federal regulatory permission” in place of informed consumer decision- making. Professionals who educate and train future generations of health professionals have become increasingly alarmed at the marketplace-driven erosions of ethical behavior – we must counteract the trend toward a new generation of health professionals who do not understand the loss of confidentiality already, and the further losses by such a Federal precedent.

These professionals of the future must understand that the basic treatment alliance and trust, which is conclusively demonstrated by the research literature as so essential to adequate health care and positive outcomes, must be vigilantly safeguarded. These future professionals must know what has been lost. They must be shown and experience the dramatic contrast between providing truly confidential care and care with such major breaches in privacy protections. They must be taught the dangers in the erosions already obvious in public trust and in professional practice, and our shared responsibilities to restore privacy protections and continue to work in the public interest. The 1996 Jaffe vs. Redmond Supreme Court opinion is powerfully instructive on the necessity of the foundation of trust. Genuine Privacy Rule protections are vital, and must be put in place under HIPAA requirements. The removal of these current standards with the elimination of patient rights to privacy protections and the introduction of governmental “regulatory permission” would also be powerfully instructive to everyone in our nation – consumers and professional practitioners.

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