National Coalition of Mental Health Professionals and Consumers, Inc.

an educational foundation and advocacy organization serving mental health consumers and professionals

Why we are fighting all the way to the Supreme Court to
restore personal health care privacy rights in America

The National Coalition on the Privacy of Health Care Information

By Patricia Dowds, Ph.D., Vice-President, and David Byrom, Ph.D., President

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, are a major destructive move which undermines not only psychotherapy benefits, but all health care usage by the elimination of personal privacy rights and protections. The fact that these regulations were so distorted and then passed undermines attempts to work on a national health plan. At stake is the credibility of the federal government to administer a financing and delivery system which truly assures affordable, high quality health care which is accessible by everyone.

The smoke and mirrors on the privacy rights means that HIPAA eliminates patient/guardian consent rights and allows insurers, Banks, Drug Companies, and 400,000 other covered entities complete access to medical information, but blocks doctors, patients and their families. These assaults on privacy rights erect more barriers to people utilizing their health care, create more fears 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 can 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 on medical treatment allows for the unworried timely access to care and the ability to tell our doctors all the facts that lead to optimal care. This is already 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. 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. Trust in the health care system is also essential to progress on creating a more cohesive and expanded Medicare system, with true drug benefits.

States have already begun 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 that has already occurred, and the further losses guaranteed 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

Please see updates at http://www.TheNationalCoalition.org – Here is a brief chronology:

Appellants are 10 national and state associations, and 9 individuals representing approximately 750,000 consumers, medical practitioners and their patients whose medical privacy, and that of their patients and members, began to be eliminated, prospectively and retroactively, on April 14, 2003 by an Amended Privacy Rule issued by the Secretary (“Amended Rule”).

Appellants and their members include individuals residing in every state and the District of Columbia who are law abiding citizens posing no threat to society who began having their personal health information used and disclosed, without their permission and against their will, to numerous other members of the public and government employees for certain “routine” purposes by covered entities exercising federal authority granted by the Amended Rule. This health information is being used and disclosed in identifiable form, is unlimited in scope, and includes such highly personal information as genetic information, the results of medical testing, diagnosis and treatment for stigmatizing illnesses such as cancer, sexually transmitted diseases, mental illness and AIDS, and information about abortion, contraception and fertility as well as marriage and family relationships. As a result of these and other uses and disclosures, Appellants are avoiding seeking medical care and are withholding information from their clinicians. Even these measures have not afforded privacy protection against disclosures of information already in Appellants’ medical records since the Amended Rule applies retroactively. Appellants filed their complaint on April 10, 2003, as amended May 5, 2003, seeking to enjoin provisions of the Amended Rule that eliminated their medical privacy and to reinstate provisions of the Original Privacy Rule (“Original Rule”).

The Appellants and the Secretary filed cross motions for summary judgment. On April 2, 2004, the District Court issued an opinion finding that the Amended Rule had caused redressable injury to Appellants’ medical privacy but had not violated their rights under the Constitution, HIPAA and the Administrative Procedure Act.

The Appellants (all of us coplaintiffs) filed our opening brief as scheduled on August 23, 2004 in Citizens for Health et al. v. Thompson, No. 04-2550 (U.S. Court of Appeals for the Third Circuit). The Department of Justice requested and received a 30-day extension of time to file their reply brief. It is due on October 22, and the Appellants’ reply brief is due November 8.

Our Appeal is currently ( 10-8-04) underway in the Federal Third Circuit Court of Appeals, in which the case will be heard in its entirety by the Appeals panel of Justices, with all evidence, testimony, etc., as if it is being argued for the first time.

The issues are:

1. Whether the Amended Privacy Rule issued by the Secretary violates Appellants’ right to medical privacy under the Fifth Amendment by granting “regulatory permission” for the use and disclosure of Appellants’ personal health information to members of the public and numerous government employees in routine situations without notice or permission and against their will.

2. Whether the Secretary violated Appellants’ right to private communications under the First Amendment by authorizing the use and disclosure of Appellants’ confidential communications with their medical practitioners in routine situations without notice or permission and against their will.

3. Whether the Secretary’s elimination of Appellants’ reasonable expectations of medical privacy in routine situations prospectively and retrospectively is consistent with the intent of Congress.

4.  Whether the Secretary acted arbitrarily and capriciously in violation of the Administrative Procedure Act in reversing a settled course of behavior and adopting a policy that he had previously rejected.
   This is what we all need – to have all the evidence reviewed by the Court!

Six amicus curiae briefs have been filed by the following organizations:

1. Texas Civil Rights Project—TCRP has a membership base of approximately 1200 Texans and files their brief as part of their mission to promote racial, economic, and social justice, as well as civil liberty under the Bill of Rights of the Texas and United States Constitution. TCRP focuses on proposition that the federal government eliminated the constitutionally protected right to privacy by conferring discretion on third parties to disclose sensitive health information against the individual’s will.

2. Group of physicians—This brief was filed on behalf of two physicians who are past presidents of the Massachusetts Medical Society (the nation’s oldest medical society), a physician who is the past chair of the AMA’s Council on Ethical and Judicial Affairs, the President of the Massachusetts Independent Physicians’ Association, a physician who is a clinical instructor at Harvard Medical School and the Association of American Physicians and Surgeons. They raise the concern that the Amended Privacy Rule conflicts with the most basic principal of the ethical practice of medicine by shifting the decision-making power with respect to the disclosure of health information from the patient to covered entities. They contend that Congress did not grant such power to HHS.

3. Program for Psychiatry and the Law at Harvard Medical School—Program participants include forensic psychiatrists, forensic psychologists, research methodologists, policy analysts, writers, and students who focus on the ethical, legal and medical aspects of patient confidentiality. They raise the concern that the Amended Privacy Rule violates the constitutionally protected right to privacy and will be harmful to the effective delivery of mental health care.

4. National Association of Social Workers (NASW) and the Pennsylvania Chapter of NASW - NASW represents the interests of 153,000 members nationwide, and the Pennsylvania Chapter represents the interests of 6,328 members in that state. This brief is filed as part of NASW’s mission of improving the quality and effectiveness of social work practice and developing and disseminating standards for social work practice and strengthening and unifying the social work profession. NASW raises the concern that the Amended Privacy Rule conflicts with its standards of practice for social workers.

5. NARAL Pro-Choice America Foundation—NARAL raises the concern that the Amended Privacy Rule adversely affects the right to informational privacy which is an essential component of the constitutional right to privacy and a woman’s right to choose.

6. Consumer Attorneys of California—The Consumer Attorneys of California represent approximately 6000 attorneys practicing in the state and advances and protects the rights of injured consumers both in courts and in the Legislature. They raise the concern that the Amended Privacy Rule has had a preemptive effect on the privacy rights of Californians protected under the state constitution and state law.

How to help restore our rights - See our website: www.TheNationalCoalition.org

Contact us at NCMHPC@aol.com or 1-866-8-COALITION (1-866-826-2548)

Fighting to preserve quality care and patient choice, privacy, and decision-making power. Determined to expand our Campaign to Inform America of what systems of real mental health and substance abuse care require. And dedicated to replace Managed Health Care, with a pro-patient, pro-quality, pro-consumer system affordable and accessible for all. Join with us in NCMHPC now!

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