NEW:  Tribute to Louise Underwood, 1936-2008

 

REMINDER: AUGUST is a great time to meet with your U.S. Representative in his/her District office near your home to seek support for H.R. 3995. Call to make an appointment today.

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VOR Weekly E-Mail Update
August 22, 2008
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PROPOSED DD ACT REGULATIONS
OPPORTUNITY FOR PUBLIC COMMENT EXTENDED

1.
Background information relating to comment opportunity

2.
Summary of VOR’s Comments and Concerns

3. National news articles relating to P&A abuses

     A.
A Death in the Family: Aided by advocates, William Bruce left the hospital – only to kill his mother

     B.
Book Review: Wrong Prescription - How the emptying of state-run mental hospitals produced a social disaster

Coming Up: State News, including Oregon, California and New Mexico
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1. Background information relating to comment opportunity
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In April, the federal government released draft regulations relating to the Developmental Disabilities Assistance and Bill of Rights Act (DD Act) of 2000. The opportunity for organizations and individuals to submit written comments was recently extended to September 29, 2008.

The DD Act is the federal law which creates and authorizes for funding state Protection and Advocacy agencies, and state DD Councils.

VOR submitted its official comments on June 5, but will be taking advantage of the extended deadline to submit additional comments. Of interest is a discussion in the proposed regulation about the importance of “informed consent” in class action litigation. Informed consent is at the heart of H.R. 3995; VOR’s written comments draw heavily on our advocacy work justifying the need for H.R. 3995. Of serious concern to VOR in the proposed regulation are proposals to significantly expand P&A’s authority with regard to investigations. A summary of VOR’s concerns are shared below.

To access the proposed regulation, visit, http://frwebgate5.access.gpo.gov/cgi-bin/PDFgate.cgi?WAISdocID=349236155966+0+1+0&WAISaction=retrieve

To submit comments, send them by mail to arrive by September 29, 2008 to:

Patricia Morissey, Commissioner
Administration on Developmental Disabilities
Administration for Children and Families
370 L'Enfant Promenade, SW., Mail Stop: HHH 405D
Washington, DC 20447

Electronic submissions

Go to, http://www.regulations.acf.hhs.gov.

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2. Summary of VOR’s Comments and Concerns
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On June 5, 2008, VOR submitted its comments in response to the proposed DD Act of 2000 regulations.

Of particular interest to VOR was the request for comments on what criteria should be applied or clearance process should be followed in order to ensure “informed consent” to include an individual as a member of a class in a class action lawsuit. Of course, this question parallels very closely VOR’s objectives with regard to H.R. 3995:

“As HHS recognizes, ‘Informed Consent’ should be ‘a cornerstone of class action lawsuits to protect the rights of individuals who may choose to be or not to be members of a potential class’ with legal guardians, where appointed, having an important role. Providing prospective class members and their legal guardians with an opportunity to make an informed decision with regard to their legal representation is the right thing to do . . . the residents of ICFs/MR and their legal guardians know far more about the quality of their living arrangements and where they wish to reside than the attorneys who bring them for ideological reasons. At a minimum, the wishes of the residents and guardians should be respected through a right to decide whether or not to be included in the suit.

“Despite the overwhelming opposition of parents and guardians in many of these suits, in the context of P&A class action lawsuits involving ICFs/MR, thousands of individuals have become ‘captive’ class members, often without notice and never with prior consent.” [VOR Comments, June 5, 2008 (excerpts, emphasis in original)].

VOR’s comments also support enhanced program accountability and indicators of progress, and STRONGLY oppose the apparent “significant expansion of unfettered, unjustified and dangerous discretion which this proposed rule leaves in the hands of state Protection and Advocacy agencies. Taken to its extreme, the combination of definitions and provisions of authority will allow P&A to access family homes to investigate the care provided by family caregivers, thus giving to the P&As authority not enjoyed by local police departments in ‘communities.’” [VOR Comments, June 5, 2008 (excerpts)].

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3. National news articles relating to P&A Abuses
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Here’s the news that follows:

A.
A Death in the Family: Aided by advocates, William Bruce left the hospital – only to kill his mother.

B.
Book Review: Wrong Prescription - How the emptying of state-run mental hospitals produced a social disaster

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A. A Death in the Family:
Aided by advocates, William Bruce left the hospital – only to kill his mother
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Wall Street Journal
August 16, 2008
By ELIZABETH BERNSTEIN and NATHAN KOPPEL


On June 20, 2006, William Bruce approached his mother as she worked at her desk at home and struck killing blows to her head with a hatchet.
Two months earlier, William, a 24-year-old schizophrenic, had been released from Riverview Psychiatric Center in Augusta, Maine, against the recommendations of his doctors. "Very dangerous indeed for release to the community," wrote one in William's record.
 

But the doctor's notes also show that William's release was backed by government-funded patient advocates. According to medical records, the advocates -- none of them physicians -- appear to have fought for his right to refuse treatment, to have coached him on how to answer doctors' questions and to have resisted the medical staff's efforts to contact his parents. As one doctor wrote, William told him his advocates believed he is "not a danger, and should be released."
 

William's father, Joe Bruce, obtained his son's medical records from Riverview eight months after the killing. "I read through the records and I just remember crying all the way through," Joe Bruce says. "My God, these people knew exactly what they were sending home to us."
Helen Bailey, one of William's advocates, declined to discuss the details of his case but says the handling of it was consistent with her professional duties. "My job is to get the patient's voice into the mix where decisions are made," says Ms. Bailey, an attorney with Maine's Disability Rights Center in Augusta. "No matter how psychotic, that voice is still worthy of being heard. I have not had the person who is so out of it that they can't communicate what they want." She added that the records reflect the doctors' perception of what happened.
 

The story of William Bruce -- based on medical records made available to The Wall Street Journal -- as well as interviews with relatives, doctors, advocates and hospital administrators brings into sharp focus the impact of a little-known government-funded advocacy program for psychiatric patients.
 

Attempt to Curb Abuses
 

Congress created the national Protection and Advocacy for Individuals with Mental Illness program, or PAIMI, in 1986 to curb abuse and neglect of the mentally ill, primarily in institutions. In the 1960s and 1970s, many abuses were uncovered at hospitals, where patients were physically restrained, neglected or overmedicated.


The PAIMI program, operated by the Substance Abuse and Mental Health Services Administration with a 2008 budget of $34.8 million a year, funds protection-and-advocacy agencies in each state. Typically nonprofits, these groups sometimes receive supplemental funding from states. According to a 2007 SAMHSA report, the agencies served 19,000 people in 2006.
 

Some doctors, hospital administrators and mental-health veterans argue that advocates are endangering the mentally ill and the public by too often fighting for patients' right to refuse treatment. Many advocates "have a strong bias," says Robert Liberman, a director of a psychiatric rehabilitation program at the University of California, Los Angeles.
 

"I don't know if they are doing people a service when they assert the right of mentally-ill individuals to remain psychotic," says Ron Honberg, director of policy and legal affairs for the National Alliance on Mental Illness, an education, support and advocacy group.
 

Proponents of patient advocates say they're essential to protecting the rights of the mentally ill. The National Disability Rights Network, which provides lobbying and other services for the patient-advocacy system, says advocates play a critical oversight role.
 

They cite the 2006 sentencing of the owners of a Kansas treatment facility on charges that they subjected patients to forced labor and involuntary servitude, and a class-action lawsuit alleging that female patients of the Lincoln Regional Center in Nebraska were raped and assaulted by a male staff member. The latter case was settled in 2007 with the hospital, which denied liability, agreeing to more thoroughly investigate assault complaints.
 

The mentally ill are "very vulnerable," says Curt Decker, executive director of the National Disability Rights Network. "There needs to be an external, independent, legally based advocacy system to make sure they are being treated fairly, equitably and safely."
 

John Morrow, senior public health advisor at SAMHSA, declined to discuss the Bruce case. But he says advocates serve a very important function, and that the organization has resolved thousands of cases of abuse and neglect.
 

In recent years, there has been a wave of legislative efforts, many inspired by violent crimes, to make it easier to mandate treatment for the mentally ill. Advocates have blunted those efforts in California, New Mexico and Michigan.
 

In Michigan, advocates successfully pushed for limits to a 2005 law -- proposed after a schizophrenic killed a young man -- mandating outpatient treatment. "They have a left-wing, individual-rights-at-all-costs agenda," says Virg Bernero, mayor of Lansing, Mich., who helped pass the law when he was a state legislator.
 

"Our legal mandate is to protect the rights of individuals," says Elmer Cerano, executive director of Michigan's PAIMI chapter. But, he says, "rights are limited when it comes to safety."
 

Despite advocates' objections, Joe Bruce -- with the help of his pro-bono attorney, Robert Owen of Fulbright & Jaworski LLP in New York -- successfully lobbied the Maine legislature to pass three bills. One gives mental-health professionals greater leeway to disclose patient information to those who may be affected by that person's conduct. Another makes it easier to medicate involuntarily committed patients.
 

William Bruce grew up in Caratunk, Maine, a picturesque town of about 110 residents nestled in the state's northern hills. His father, a rugged, talkative man, worked as a senior technician for the Maine Department of Transportation. His mother, Amy, served as the town's treasurer. The oldest of three boys, William grew up in a 100-year-old farmhouse that sits on the banks of the winding, rock-strewn Pleasant Pond Stream.
 

Even when Willy -- as he was known as a boy -- was young, "there was just something different about him," his father says. Although cute and energetic, William was hyperactive and deeply self-centered, his father says. And he could turn suddenly violent: When he was four, he pushed his younger brother down the stairs. At five, he broke the same brother's leg, his father says.
 

As an adolescent, William was handsome, popular with girls and deeply troubled, attempting suicide at 14. He would sometimes see therapists, but would quit and stop taking any prescribed medication, Joe says.
 

William's behavior particularly pained his mother. Tanned and athletic, Amy loved kids, often hugging her own and opening her home to neighborhood children. But Joe says she was seldom able to emotionally connect with her eldest son, and repeatedly blamed herself for his problems.
 

After dropping out of high school, getting his equivalency degree and serving in the Army, William bounced among low-level jobs and had a few minor brushes with the law. On Christmas Eve, 2003, Joe says William had his first psychotic episode in a Target store, telling his father that the security cameras were monitoring him.
 

But he refused to seek treatment, and his family couldn't insist. Maine, like many states, requires that the mentally ill pose a substantial risk of harm to themselves or others, based on recent evidence, to be involuntarily committed.
 

In March 2005, after William threatened two men with a loaded AK-47 assault rifle -- his father is a licensed gun dealer -- William went to a psychiatric facility in Bangor. He was eventually released but stopped taking his medicine.
 

William deteriorated. Sometimes he walked into neighbors' homes unannounced. Once he put his mother in a headlock. In January 2006, William punched his father in the face, screaming, "You have disobeyed direct orders from a superior officer in the CIA." He was sent on Feb. 6, to Riverview, an extended-care psychiatric facility.
 

'An Awful, Awful Feeling'
 

"We were certain he would be released," Joe Bruce says. Waiting for that day "was an awful, awful feeling."
 

A few weeks after William Bruce's admission, psychiatrist Jeffrey Fliesser wrote that William was hostile, paranoid and "dangerous to others without additional observation and active attempts to treat him," an opinion he reiterated over the next five weeks. The doctor also wrote that he urged William, now diagnosed with paranoid schizophrenia, to take medication, but William refused. Dr. Fliesser declined to comment about the case for this story.
 

William began working with advocates employed by the Maine Disability Rights Center, which receives funding from the federal PAIMI program as well as state and private sources.
 

According to a nurse's treatment record dated March 23, Ms. Bailey, the advocate, told Riverview administrators she saw no documentation showing that William should remain hospitalized. Trish Callahan, another advocate, suggested that William "may actually be getting worse by remaining here," the nurse's record says.
 

"I repeatedly explained to the patient, his advocates and other team members, his paranoid psychosis will not likely improve without medication therapy," Dr. Fliesser wrote in his notes. Ms. Bailey says she gives legal opinions, not clinical ones, and notes that her job is to represent the client's wishes.
 

By the beginning of April, William Bruce's case was "in a high state of contention," wrote Daniel Filene, a psychiatrist who had taken over the case. On April 6, Trish Callahan, another advocate, attended a meeting with William's treatment team. She stressed that William should be discharged and that his summer job prospects were being harmed by his continued hospitalization, Dr. Filene's notes say.
 

According to these notes, Dr. Filene suggested to William that he take trips outside the hospital. When William voiced reluctance to venture out, Ms. Callahan told William, "They want to see that you can play nicely in the community. Just say 'Yes.' " He did. Dr. Filene asked William if there was a risk he would refuse to return to the hospital from a community trip. "Ms. Callahan told him, 'Just say no,' and Mr. B. replied, 'No,' " the doctor wrote in his notes.
 

Dr. Filene wrote that he asked William for permission to speak to his mother and his previous mental-health providers. Ms. Callahan said there would be no benefit and that William's parents were "a negative force in his life." William refused to give consent, Dr. Filene's notes say. On April 11, Dr. Filene wrote that William said his advocates were telling him that he is "not a danger and should be released."
 

Ms. Callahan didn't respond to requests seeking comment. Dr. Filene declined to comment about the case for this story.
 

"I think the advocates overstepped their bounds," says Riverview Superintendent David Proffitt. William "was relying on the people whose purpose it was to ensure his civil rights were being exercised, and unfortunately that interfered with his other right, which was to get medical care."
 

Ms. Bailey, Ms. Callahan's superior, doesn't believe the advocates prevented William from getting medical care. "There is nothing in the William Bruce case that is contrary to the way we do business," she says, adding that it is the hospital's responsibility to try to have a patient committed or forcibly medicated.
 

William Gets Released
 

More generally, Ms. Bailey says it isn't a given that families of the mentally ill should be involved in decisions involving their care. "There are some God damn nasty families out there," she says. SAMHSA declined to comment on the case, as did the Maine Department of Health & Human Services.


In the end, Dr. Filene wrote that while he recommended William stay at Riverview, William appeared very unlikely to meet Maine's legal criteria for further involuntary hospitalization beyond his court-ordered commitment term, which expired at the end of April. On April 20, 2006, William was discharged.
 

William was soon back home. He hid steak and butcher knives in his bedroom and spent hours pacing in the driveway, giggling and babbling unintelligibly to himself. Joe began calling to check on his wife several times a day. "It was the worst we'd ever seen him," he says.
 

On June 20, two months after his son's release, Joe Bruce returned home from his office to find his wife's battered, bloodied body. William was gone.
 

"My son has killed my wife," Joe told the 911 dispatcher, later adding that he was arming himself in self-defense.
 

According to the medical examiner's report, Amy died of multiple blunt-force trauma and chop injuries to her head. She was 47 years old.
 

Police arrested William Bruce at his grandparents' house and later charged him with killing his mother. He told a psychologist that the Pope told him to kill his mother because she was involved with al Qaeda and Saddam Hussein. Joe Bruce became William's legal guardian and gained access to his medical records.
 

When police returned Amy Bruce's purse to Joe, he found an unsent letter she had written to her eldest son.
 

"I've always had this horrible feeling that I've let you down in some way," she wrote. "The only wish I have is that someday we can look each other straight in the eyes and say I'm sorry and I love you more than life itself." She added: "I will not give up on you ever."
 

In March 2007, William was found not criminally responsible by reason of insanity and was committed to Riverview again, this time indefinitely. At the end of 2007, faced with the possibility of being restrained and medicated against his will, William agreed to take Abilify, an antipsychotic drug. Within weeks, his mental status improved.
 

'I Blame Myself'
 

William Bruce, now 26, is strikingly handsome, his dark hair slicked back. Sitting in a Riverview conference room on July 23, he spoke courteously but deliberately. It was the first time he has been interviewed about his case.
 

"I blame the illness, and I blame myself," William said of his mother's death. "The guilt is...," he paused, struggling to find a word "...tough."
 

William said the first time he came to Riverview, he refused to believe he was mentally ill and approached the advocates because he wanted out.
 

"They helped me immensely with getting out of the hospital, so I was very happy," he said. He later added, "The advocates didn't protect me from myself, unfortunately."
 

These days, William is taking criminal-justice classes online through Colorado Technical University. He points proudly to his 3.94 grade-point average and says he hopes to attend law school to learn more about mental-health laws. William and his father talk on the phone almost every day.

 

"He stood by me the whole time despite the horrible tragedy...despite what I did," William said. "I am the man I am today because of my dad."
 

While William believes patients deserve some protection, he said he understands his father's fight to strengthen commitment and treatment laws.

 

That fight took another turn last month, when Ms. Bailey and another attorney filed a lawsuit that could undermine portions of a law Joe supported. The suit, filed in U.S. District Court in Maine, is directed at the law which makes it easier for hospitals to compel patients to take medication.
 

"There are times when people should be committed," William said. "Institutions can really help. Medicine can help."
 

"None of this would have happened if I had been medicated."


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B. Book Review: Wrong Prescription –
How the emptying of state-run mental hospitals produced a social disaster
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Wall Street Journal
By PAUL MCHUGH
June 14, 2008; Page W10

About the author: Dr. McHugh is a University Distinguished Service Professor of Psychiatry at Johns Hopkins University. His book "Try to Remember: Psychiatry's Clash Over Memory, Meaning, and Mind" will be published in October.

The Book: The Insanity Offense, By E. Fuller Torrey, Norton, 265 pages, $24.95

Summary: This book looks at the deinstitutionalization of the mentally ill, an experiment that also failed.

There are times and situations that call for prophets. Not fortunetellers or soothsayers, but biblical prophets like Amos or Jeremiah who furiously proclaim the old truths, puncture our pretensions and predict from current tribulations worse to come if what lies deeper than sin -- idolatrous worship of false gods -- continues. E. Fuller Torrey, a psychiatrist who cares for patients with schizophrenia and manic-depression, is to my mind the doctor nearest in character to an ancient Hebrew prophet.

In "The Insanity Offense," he describes the grim consequences -- in death, violence and suffering -- of laws that, beginning in the late 1960s, released the seriously mentally ill from the oversight of state mental-health services and permitted them to wander away from the treatment and protection they desperately needed. Dr. Torrey identifies an unholy alliance of rash conservatives seeking to save public money by abandoning a traditional state obligation and self-righteous liberals defining the neglect of these patients as "defending their civil rights." We need prophets to confront such alliances -- anything less will fail -- and in this splendid book we hear one.

"The Insanity Offense" is "about one of the great social disasters of recent American history," Dr. Torrey writes. "It began within the lifetime of many of us, is continuing, and today affects approximately 400,000 individuals and their families. In the annals of twentieth-century American history, it should be included among the greatest calamities."

Some of the background should be familiar. From the mid-19th century right up until the 1960s, state governments accepted responsibility for the care and treatment of the seriously mentally ill. This arrangement came about because in the 1840s such civic crusaders as Dorothea Dix (in what may be the first piece of social research ever conducted in America) revealed the special ordeal of delusional and distressed mental patients: They tended to lose their way in life and, because of their unpredictable and occasionally violent propensities, filled the country's jails, workhouses and shelters, where they often suffered ugly mistreatment. Dix reported to the Massachusetts legislature in 1843 on "the present state of Insane Persons confined within this Commonwealth, in cages, cellars, stalls, pens! Chained, naked, beaten with rods, and lashed into obedience!"

The state mental-hospital system was founded to care for these patients. Though psychiatrists before the mid-20th century could offer them little more than shelter and protection, even that modest level of care was far from inconsequential: It kept the patients and the community from harm. State mental hospitals stood as beacons of a public obligation.

By the 1950s, though, these hospitals had become overcrowded and were themselves prompting calls for reform. It was a missed opportunity: Much could have been accomplished if psychiatric leaders at the time had moved quickly to repair a failing system and to educate the public about serious mental illness. The discovery of "anti-psychotic" phenothiazines and "anti-depressants" meant that the symptoms of these patients could be greatly relieved and their dangerous behavior much reduced if such medications were used properly. Steps could have been taken to address the concerns of the growing civil-rights movement and ensure that long-confined patients were not victims of neglect. And the increasing zeal for fiscal restraint and tax reform in state government should have been met head-on with a frank discussion about the costs and benefits of shouldering responsibility for some of our most vulnerable citizens.

Instead, psychiatric leaders at the time offered little or no defense. Worst of all, they failed to explain why state responsibility should continue, no matter what changed in the settings for patient services, so that the mentally ill would be monitored and not slip from sight. Patients with schizophrenia and manic-depression, it should have been explained, often lack any sense of their own mental disorders and so need regular supervision to sustain their treatment.

Why the psychiatric establishment failed to meet these challenges is not obvious. Many doctors wilted before criticism of state-hospital services and mustered weak arguments to defend them. Many others at the time were absorbed in the psychotherapy of patients with milder mental disorders and had little interest in the seriously mentally ill, whose care they were happy to leave to the state and others. As a result, laws were passed in the late 1960s with the direct intent of emptying state hospitals, releasing the patients and saving money -- consequences be damned.

The new laws deprived psychiatrists of the authority to hold patients under surveillance. In the past, psychiatrists could keep patients in a hospital if they were "of such mental condition . . . [as being] in need of supervision, treatment, care, or restraint." Now patients could not be held unless "immediately" or "imminently" dangerous to themselves or others.

The harrowing effects were evident almost immediately, and Dr. Torrey recounts them in vivid detail in "The Insanity Offense." First he offers plenty of statistics to indicate the state of the problem as it exists today -- citing, for instance, the number of seriously mentally ill who are in prison (218,000) or homeless (175,000) at any given time. But just as "numbers are too abstract" to convey the magnitude of a large-scale tragedy such as an earthquake or flood, he says, the true horror that resulted from the "deinstitutionalization" of the seriously mentally ill is best conveyed by individual stories.

Dr. Torrey recounts murder after murder by mentally ill patients, each of whom was actively avoiding treatment. We learn about William Bruce, who was diagnosed with schizophrenia and hospitalized but refused to take his medication. His mother "tried to get help everywhere," a friend related, but "at each phase she was turned away because he never hurt anyone." Bruce bludgeoned his mother to death in 2006 and slit her throat.

The most awful example was the murder last year of 32 students and faculty at Virginia Tech by Cho Seung-Hui, a 23-year-old student who had been court-identified as in need of treatment but allowed by the college to attend classes because the school would not treat mentally ill students -- even those suffering from schizophrenia -- unless the students requested it. Mr. Cho could not be involuntarily committed because he was not an "imminent danger" to himself or others and was not "substantially unable to care for himself." As Dr. Torrey writes: "This is one of the most stringent state commitment statutes in the United States and another example of how changes in mental illness laws in the 1970s and 1980s continue to have real consequences."

Given the difficulty of committing the seriously mentally ill for involuntary treatment, our jails and prisons have become de facto mental institutions. Dr. Torrey's data indicate that more than 30% of inmates are mentally ill. He also describes the abuse they suffer in these brutal environments and the increase in suicides by mentally ill prisoners. The hellish scenes described by Dorothea Dix in 1843 have returned -- with a vengeance, given the huge increase in the American population since the mid-19th century.

What is to be done? "The Insanity Offense" calls for a restoring of some central state responsibility for these patients in ways that would permit monitoring them regularly, keeping them on their medications and insisting on a protected-care setting if they relapse. It is not necessary to reopen all the old state hospitals: The programs that are needed could be carried out in clinic offices with backup, shorter-stay hospital beds.

Dr. Torrey points to successes in a few states. He particularly endorses a program in Wisconsin that provides outpatient tracking and regular medication treatment along with resources for ready involuntary commitments when either treatment fails or the patient becomes unable to control behavioral outbursts.


The issue is whether the public can be rallied to support these reforms. One obstacle: Legions of lawyers are opposed to such changes, claiming that they are infringements on "civil liberty." More than a few such lawyers are heard to proclaim that the violence and murder committed by mentally ill people are "the price we must pay for democracy." Here is idolatry of the most blatant kind -- with human sacrifice, no less -- and hence our need for the fury of a prophet.

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Tamie Hopp

 

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