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Medical Whistleblower Advocacy Network

Human Rights Defenders

“All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.”

 Universal Declaration of Human Rights

Article 1

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PATIENT BILL OF RIGHTS

The Bipartisan Patient Protection Act (informally and incorrectly known as the McCain-Edwards-Kennedy Patients' Bill of Rights) Senate Bill S.1052 of the 107th Session of the US Senate, was an attempt at providing comprehensive protections to all Americans in health plans in 2001.

The House of Representatives and Senate passed differing versions of the Patients' Bill of Rights. Although both bills would provide patients key rights, such as prompt access to emergency care and medical specialists, only the Senate-passed measure would provide patients with adequate means to enforce their rights.

The Senate-passed Patients' Bill of Rights confers a broad array of rights on patients. The bill would ensure that patients with health care plans have the right to:

  • have their medical decisions made by a doctor;
  • see a medical specialist;
  • go to the closest emergency room;
  • designate a pediatrician as a primary care doctor for their children;
  • keep the same doctor throughout their medical treatment;
  • obtain the prescription drugs their doctor prescribes;
  • access a fair and independent appeals process if care is denied; and
  • hold their health plan accountable for harm done.

This bill was passed by the US Senate by a vote of 59-36 in 2001 and has been waiting for a final vote by the US Senate (after addition of Amendments by the US House of Representatives) since 2002. It failed. 

Patient Advocacy Principles

Patient Advocacy Principles:(from the National Physicians Alliance  http://npalliance.org/)

We place the best interests of our patients above all others and avoid conflicts of interest and financial entanglements. The health of our patients is our first concern. (Oath of Geneva)

We affirm the World Health Organization’s definition of health as “a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

We believe health is determined by a wide variety of influences beyond biology, including familial, social, psychological, environmental, economic, political, legal, cultural and spiritual factors. Understanding and addressing these complex connections is a duty of our profession.

We recognize that health and disease are not limited by national borders. We must advocate for national and international policies that support health promotion and disease prevention.

We advocate for a clean environment, a fundamental requirement for a healthy society.

We believe that the health care workforce must reflect the diversity of the population.

We believe every health professional must value and respect cultural diversity in order to provide sensitive and effective care to all patients.

We seek collaborative and creative solutions with other health professionals and our local communities to protect and improve public health.

We believe that individual health is tied to the health of communities. Physicians have an important role in ensuring a strong and viable public health system.

We support an approach to knowledge acquisition grounded in empirical research, evidence-based conclusions, professional peer review, and transparency of process.

We acknowledge and respect the long history of medical practice and tradition in all cultures and encourage research into these practices.

The Oath of Geneva

The World Medical Association: Declaration of Geneva (1948),  Physician's Oath

Adopted by the General Assembly of the World Medical Association, Geneva, Switzerland, September 1948 and amended by the 22nd World Medical Assembly, Sydney, Australia, August 1968.

 

The World Medical Association is an association of national medical associations. This oath seems to be a response to the atrocities committed by doctors in Nazi Germany. Notably, this oath requires the physician to "not use [his] medical knowledge contrary to the laws of humanity." This document was adopted by the World Medical Association only three months before the United Nations General Assembly adopted the Universal Declaration of Human Rights (1948) which provides for the security of the person.

 

Physician's Oath

At the time of being admitted as a member of the medical profession:

I solemnly pledge myself to consecrate my life to the service of humanity;

I will give to my teachers the respect and gratitude which is their due;

I will practice my profession with conscience and dignity; the health of my patient will be my first consideration;

I will maintain by all the means in my power, the honor and the noble traditions of the medical profession; my colleagues will be my brothers;

I will not permit considerations of religion, nationality, race, party politics or social standing to intervene between my duty and my patient;

I will maintain the utmost respect for human life from the time of conception, even under threat, I will not use my medical knowledge contrary to the laws of humanity;

I make these promises solemnly, freely and upon my honor.

Reference: Declaration of Geneva (1948). Adopted by the General Assembly of World Medical Association at Geneva Switzerland, September 1948.

Protection and Advocacy for the Disabled

There are several Federal Program designed to offer protection and advocacy services for the disabled

Protection and Advocacy for Assistive Technology (PAAT)

The Protection and Advocacy for Assistive Technology (PAAT) Program was created in 1994 when Congress expanded the Technology-Related Assistance for Individuals with Disabilities Act (Tech Act) to include funding for P&A systems to "assist individuals with disabilities and their family members, guardians, advocates and authorized representatives in accessing technology devices and assistive technology services" through case management, legal representation and self advocacy training.

The Rehabilitation Services Administration (RSA) administers the PAAT program.

Assistive Technology Act, 29 USC 3011,3012, PL 105-394.

Protection and Advocacy for Beneficiaries of Social Security (PABSS)

The Protection and Advocacy for Beneficiaries of Social Security (PABSS) Program provides assistance to eligible Supplemental Security Income (SSI) and Social Security Disability Income (SSDI) recipients who are interested in obtaining, regaining or maintaining employment. Individuals eligible for assistance through the PABSS program are any Social Security beneficiary who wishes to work including: former beneficiaries who may become re-entitled to benefits as a result of job loss, those re-entering the community following discharge from an institution or other facility, and those facing some other change in their life situation which entitles them to benefits. Eligible service recipients may also include individuals who retain their Social Security benefits and desire advocacy services due to threat of job loss, failure of an employer to provide reasonable accommodations, or other forms of discrimination.

The Social Security Administration (SSA) administers the PABSS program.

Ticket to Work and Work Incentives Improvement Act, 42 USC 1320b-20, PL 106-170.

Protection and Advocacy for Persons with Developmental Disabilities (PADD)

The Protection and Advocacy for Persons with Developmental Disabilities (PADD) Program was created by the Developmental Disabilities Assistance and Bill of Rights Act of 1975. It authorized each state and territory to create a protection and advocacy system (P&A). The Act authorized the pursuit of  legal, administrative and other appropriate remedies to protect and advocate for the rights of individuals with developmental disabilities under all applicable federal and state laws. In 1994, the Act was amended to expand the system to include a Native American protection and advocacy program.

The Administration for Children Youth and Families, Administration on Developmental Disabilities (ADD) administers the PADD program.

Developmental Disabilities Assistance and Bill of Rights Act, 42 USC 15001, PL 106-402

Protection and Advocacy for Individuals with Mental Illness (PAIMI)

The Protection and Advocacy for Individuals with Mental Illness (PAIMI) Program was established in 1986. Every state and territory has a PAIMI program which receives funding from the national Center for Mental Health Services. The PAIMI programs are mandated to (1) protect and advocate for the rights of people with mental illness and (2) investigate reports of abuse and neglect in facilities that care for or treat individuals with mental illness. The P&A system designated as the PADD program in each state and territory is also responsible for operating the PAIMI program.

The Substance Abuse and Mental Health Services Administration, Center for Mental Health Services (CMHS) administers the PAIMI program.

Protection and Advocacy for Mentally Ill Individuals Act, 42 USC 10801, PL 106-310.

Protection and Advocacy for Individual Rights (PAIR)

The Protection and Advocacy for Individual Rights (PAIR) Program was established by Congress as a national program under the Rehabilitation Act in 1993. PAIR programs were established to protect and advocate for the legal and human rights of persons with disabilities. Although PAIR is funded at a lower level than PADD and PAIMI, it represents an important component of a comprehensive system to advocate for the rights of all persons with disabilities.

The Office of Special Education and Rehabilitative Services, Rehabilitation Services Administration (RSA) administers PAIR.

Section 509 of the Rehabilitation Act, 29USC 794e, PL 106-402

Protection and Advocacy for Persons with Traumatic Brain Injury (PATBI)

The Protection and Advocacy for Individuals with Traumatic Brain Injury (PATBI) Program is one of the newest of the P&A programs. Recognizing the significant impact that a traumatic brain injury has on individuals, families, and society, Congress passed the Traumatic Brain Injury Act of 1996 (Public Law 104-166) "to provide for the conduct of expanded studies and the establishment of innovative programs with respect to traumatic brain injury." When Congress reauthorized the Act as part of the Children's Health Act of 2000 (Public Law 106-310), it also authorized the Health Resources and Services Administration to make grants to protection and advocacy systems for the purpose of ensuring that individuals with traumatic brain injuries and their families have access to (1) information, referrals and advice; (2) individual and family advocacy; (3) legal representation; and (4) specific assistance in self-advocacy.

The Health Resources and Services Administration (HRSA) through its Maternal and Child Health Bureau (MCHB) administers the PATBI program.

Children's Health Act of 2000, 42 USC 300d-53, PL 106-310

Protection and Advocacy for Voting Access (PAVA)

The Protection and Advocacy for Voter Access (PAVA) Program is the newest protection and advocacy program. The purpose of the program is to ensure full participation in the electoral process for individuals with disabilities, including registering to vote, casting a vote and accessing polling places. The PAVA program may serve any person with a disability when the issue involves access to the electoral process. The most significant restriction on the PAVA program is that none of the funds shall be used to initiate or otherwise participate in any litigation related to election-related disability access. This restriction does not prohibit the protection and advocacy from using funding from another source to pursue such activity.

The Administration for Children Youth and Families, Administration on Developmental Disabilities (ADD) administers the PAVA program.

Help America Vote Act of 2002, 42 USC §15461-62, P.L. 107-252

Protection and advocacy systems are enabled under these federal laws and are designated in each state and territory of the United States. For more information visit the web site of the National Association of Protection and Advocacy Systems (NAPAS) at www.napas.org.

“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”
 
― Leo Buscaglia

Medical Whistleblower Advocacy Network

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Martin Luther King Jr. ,  Title 42 and 1983

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"Never impose on others what you would not choose for yourself."  Confucius

"It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."

Theodore Roosevelt- Excerpt from the speech "Citizenship In A Republic", delivered at the Sorbonne, in Paris, France on 23 April, 1910