Front Groups and Astroturf

via SOURCEWATCH:

A front group is an organization that purports to represent one agenda while in reality it serves some other interest whose sponsorship is hidden or rarely mentioned -- typically, a corporate or government sponsor. The tobacco industry is notorious for using front groups to create confusion about the health risks associated with smoking, but other industries use similar tactics as well. The pharmaceutical and healthcare industries use front groups disguised as "patients rights" advocates to market their products and to lobby against government policies that might affect their profits. Food companies, corporate polluters, politicians -- anyone who has a message that they are trying to sell to a skeptical audience is tempted to set up a front group to deliver messages that they know the public will reject if the identity of the sponsor is known.

The shadowy way front groups operate often makes it difficult to know whether a seemingly independent organization is actually representing some other entity. That's why we need your help to research and expose them. Using the resources that we have listed here, it is often possible to identify publicize the hidden sponsor who lurks behind a front group. We need you to help in the search.

National Alliance on Mental Illness

(Redirected from NAMI)

The National Alliance on Mental Illness (NAMI), sometimes mistakenly called the "National Alliance for the Mentally Ill," is a U.S. organization that describes itself as the "nation’s largest grassroots mental health organization dedicated to improving the lives of persons living with serious mental illness and their families."^[1]

Astroturf refers to apparently grassroots-based citizen groups or coalitions that are primarily conceived, created and/or funded by corporations, industry trade associations, political interests or public relations firms.

Lobbying for positions counter to the welfare of the mentally ill

In 2004, NAMI opposed the placement of "black box" warnings on antidepressants determined to cause suicide in under-18 year olds, and in 2006 opposed black box warnings on ADHD drugs causing heart attack, stroke and sudden death in children in 2006. Despite overwhelming evidence of serious adverse cardiac events and sudden deaths caused by ADHD drugs, in 2006 NAMI took the position that the “black box” warning on ADHD drugs was “premature.” Also, on December 18, 2003, The New York Times exposed that NAMI had bused scores of protestors to a hearing in Frankfort, Kentucky, took out full page ads in Kentucky newspapers, and sent angry faxes to state officials, all to protest a state panel proposal to exclude the antipsychotic drug Zyprexa from Medicaid’s list of preferred medications. According to the article, “What the advocacy groups did not say at the time was that the buses, ads and faxes were all paid for” by the manufacturer of the antipsychotic drug Zyprexa, Eli Lilly.^{[4] (emphasis mine)}

Characteristics of patient-advocacy pharmaceutical front groups

Patient advocacy groups that serve as pharmaceutical fronts may display some or all of the following characteristics.

They may:

• Derive most, if not all of their revenue from pharmaceutical manufacturers;
• Lobby for treatment programs that also benefit their drug-company donors;
• Tend to be slower to publicize treatment problems than breakthroughs;
• Tend not to openly question drug prices;
• Tend to encourage patients to stay on their medications and offer programs to help patients stay on their medication, and push insurers to pay for it;
• Funding from drug companies to the organization usually comes from the drug makers' marketing or sales divisions, not charity offices;
• Fail to adequately discuss, or minimize discussion of adverse drug side effects of drugs like brain damage or suicide;
• Fail to lobby for more or additional safety research due to the potential for cutoff of their pharma funding^[5]
• Focus on drugs as the preferred treatment, and neglect issues like housing and income support, vocational training, rehabilitation, and empowerment, all of which can play a role in recovery from mental illness.^[6]

Truly independent patient advocacy groups are likely to be controlled by volunteers who actually take mental health drugs themselves. True grassroots patient advocacy groups are likely to have "fire walls" against donor influence, like policies against accepting funding from drug companies.

Funding

NAMI is funded in part by pharmaceutical corporate benefactors. [1] In May 2006, the Philadelphia Inquirer reported that NAMI president Michael J. Fitzpatrick "said one donor recently demanded that, in return for funding a TV public-service announcement, the ad include the company's direct contact information. Fitzpatrick said NAMI refused." [2]

NAMI's 2004 Annual Report lists the following company's as corporate supporters ^[7]

• Abbott Laboratories
• AstraZeneca
• Bristol-Myers Squibb
• Eli Lilly
• Forest Laboratories
• GlaxoSmithKline
• Janssen Pharmaceutica
• McNeil Laboratories
• Otuska America Pharmaceutical
• Pfizer (Wyeth)

Contact details

NAMI
3803 N. Fairfax Dr., Ste. 100
Arlington, VA 22203
Main: 703-524-7600
Fax: 703-524-9094
TDD: 703-516-7227
Email: info AT nami.org
Web: http://www.nami.org

Federal Lawsuit
UFCW Local 1776 v. Lilly Class Action Federal Lawsuit
Lilly has been the largest contributor among pharmaceutical manufacturers to NAMI, giving the organization approximately $2.87 million between 1996 and 1999. Lilly “donations” to NAMI were not limited to money. In 1999, Mother Jones Magazine reported that Lilly executive Jerry Radke was “on loan” to NAMI as an executive. Also in 1999, Bob Postlethwait, a Lilly executive (and TeenScreen advisor) who headed the group that produced and marketed Zyprexa assisted NAMI Indiana in securing government funding for an executive director. Lilly also provided funding for a variety of brochures and programs produced by NAMI highlighting the use of atypical antipsychotics such as Zyprexa. Another – the 2001 “Access to Effective Medications” brochure produced by NAMI National for legislators and paid for by Lilly – lays out a blueprint for nationwide NAMI lobbying of state governments to reduce or remove any limitations to payments for atypical antipsychotics, again down-playing the side effects of such drugs.

Using money from Lilly and other pharmaceutical companies, NAMI – both the various state-level association and the national organization – has effectively lobbied state and federal governments to increase spending on atypical antipsychotic drugs and to reduce restrictions on access to those pharmaceuticals, thereby protecting pharmaceutical industry profits through the guise of independent, grassroots advocacy. For example, between 1998 and 2000, Lilly gave NAMI Washington State $91,000. During that time, NAMI Washington State, in an effort led by NAMI lobbyist Brad Boswell, lobbied the state legislature for $1 million specifically for atypical antipsychotic drugs. Brad Boswell was Lilly’s Washington state lobbyist just prior to his assignment with NAMI Washington State. NAMI also joined a suit initiated by the Pharmaceutical Research and Manufacturers of America (PhRMA) against the state of Michigan in order to increase physician access to higher cost pharmaceuticals – including atypical antipsychotics – under the state’s Medicaid program. 
(emphasis mine)

hat tip: 1 Boring Old Man

Drug industry $ infects mental health advocacy and mental health public policy

Philip Rodenberger made $16,500. in 2010 from Astra Zeneca and Lilly when he was my son's psychiatrist. I would have liked to have known that... Philip Rodenberger is the Medical Director of Central Washington Comprehensive Mental Health. 

The project yakima Valley Systems of Care has made NAMI a partner without any real consideration given to the potential negative impact.  NAMI very well may have some good programs which people find helpful, however I for one, am critical of how biased towards the  bio-medical model NAMI's information is.  The fact is it's literature repeatedly claims that psychiatric diagnoses are in fact diseases or chemical imbalances when this is a hypothesis; not a validated theory, let alone a medical fact or certainty.  NAMI literature also repeatedly puts forth the idea how important psychiatric drugs and "treatment compliance" is; without informing people about how very dangerous, potentially disabling and/or  fatal treatment compliance can be.  While the local affiliate may not receive any money directly from the drug industry; it uses materials which were developed by the drug industry.  The information is sometimes little more than direct-to-consumer advertising; disguised as information and educational materials.  


My main complaint about NAMI however, is that NAMI offers no advocacy or support for those who have been harmed by psychiatric drugs, or by the manner in which mental health services are provided.  


My son was a normal child with a very high IQ, and instead of the recommended treatment for his severe PTSD and Temporal Lobe Epilepsy he was given massive amounts of psychiatric drugs and is now severely disabled.  He was given a diagnosis of schizophrenia even though Temporal Lobe Epilepsy is a condition which excludes a diagnosis of schizophrenia--it is a neurological condition which has the same symptoms as schizophrenia, and is caused by brain trauma.  He was the victim of a violent assault at the age of three while in foster care.   


My son will, in all likelihood, die while he is still a young man because of the damage the drugs have caused him.  I cannot help but be filled with pain over the fact that the decisions which put this chain of events in motion were without my approval, or consent; against State and Federal Law.  That said, I know in my heart that I did everything in my power to prevent the harm that was done.   I am grateful that he is home, and for the time that we have together. 


This project is to correct flaws in the system, including the ones that allowed the events which have caused my son and my family so very much harm.   It is a wonderful opportunity for this community to truly help children and their families, more effectively.  Many communities have struggled with making the systemic changes necessary to more effectively help children and their families.  This community is no exception, it is my hope that this community should not give up, but will work all the more diligently and successfully transform the mental health care system for the children who are counting on us to do so.


To clarify what "project" I am referring to is the SAMHSA grant of $9 million to Yakima County to reform the public mental health service system for children.  The last reports I have on the progress are here and here


via PROPUBLICA:

Health Advocacy Groups Take Drug Company Cash—Often Without Full Disclosures, Report Says

photo by Andrew McGill

by Marian Wang                                                         
ProPublica, Jan. 13, 2011, 4:14 p.m

We’ve reported extensively on the ties between pharmaceutical companies and the physicians they fund to speak, consult and do research. But doctors aren’t the only ones taking money from drug companies—and they’re not the only stakeholders in the field of health whose public disclosures aren’t complete.

According to a new study in the American Journal of Public Health, not-for-profit health advocacy groups like the American Diabetes Association and the National Alliance on Mental Illness also get money from drug companies in the form of grants that—more often than not—aren’t disclosed by those groups.

The study examined more than 160 health advocacy organizations that received funding from Eli Lilly in the first half of 2007. (Lilly was the first company to make its grant registry public.) Here’s what the analysis found:

As an aggregate, 25% of HAOs acknowledged Lilly funding anywhere on their Web site. Eighteen percent acknowledged Lilly in their 2007 annual report, 1% acknowledged Lilly on a corporate sponsors page, and 10% acknowledged Lilly as the sponsor of the grant event reported in the [Lilly Grant Registry.]

Health advocacy groups often advocate for research and the approval of new drugs on top of promoting public awareness. According to the study, their reputation as a trusted resource for information on specific diseases and their treatments should prompt “far more detailed” disclosure of their corporate grants and industry relationships.

This report isn’t the first time such ties have been spotlighted.

The National Alliance on Mental Illness, or NAMI, came under similar scrutiny back in 2009 when Sen. Charles Grassley, a top Republican, began making inquiries.

From 2006 to 2008, the group took in nearly $23 million in drug company donations—about three-quarters of its fund-raising. At the time, NAMI’s executive director told The New York Times that “the percentage of money from pharma has been higher than we have wanted it to be” and promised greater disclosures.

Following the revelations about NAMI, Sen. Charles Grassley sent letters to 33 health advocacy groups asking them to disclose details about their financial ties to drug and device makers. He has not released the responses he received from the groups.

Today’s report, however, highlighted continued concerns about the degree to which a group’s funding influences its advocacy and helps boost sales for drug companies making donations. Here’s an example from the report, involving NAMI:

This lack of transparency is disappointing because, either by design or through a convergence of interests, the HAOs in the current study pursued activities that promoted the sale of Lilly products.

In the area of neurosciences, Lilly gave NAMI $450,000 for its Campaign for the Mind of America. NAMI has advocated that cost should not be a consideration when prescribing for patients. ‘‘For the most severely disabled,’’ insisted NAMI, ‘‘effective treatment often means access to the newest medications such as atypical anti- psychotic and anti-depressive agents. . . . Doctors must be allowed to utilize the latest breakthrough in medical science . . . without bureaucratic restrictions to the access for life-saving medications.’’To the degree that NAMI’s campaign succeeded, the market for Lilly’s neuroscience drugs expanded.

As we’ve noted, the health care law contains a provision requiring greater disclosure of drug company payments to physicians by 2013, but it does not include company payments to health advocacy organizations.

Under the Influence 60 minutes 


via CBS News
Excerpts from Under the Influence:


One reason those profits have exceeded Wall Street expectations is the Medicare prescription drug bill. It was passed more than three-and-a-half years ago, but as 60 Minutes correspondent Steve Kroft reports, its effects are still reverberating through the halls of Congress, providing a window into how the lobby works. 

---

The unorthodox roll call on one of the most expensive bills ever placed before the House of Representatives began in the middle of the night, long after most people in Washington had switched off C-SPAN and gone to sleep. 

The only witnesses were congressional staffers, hundreds of lobbyists, and U.S. representatives, like Dan Burton, R-Ind., and Walter Jones, R-N.C.

"The pharmaceutical lobbyists wrote the bill," says Jones. "The bill was over 1,000 pages. And it got to the members of the House that morning, and we voted for it at about 3 a.m. in the morning," remembers Jones.

Why did the vote finally take place at 3 a.m.?

"Well, I think a lot of the shenanigans that were going on that night, they didn't want on national television in primetime," according to Burton.

"I've been in politics for 22 years," says Jones, "and it was the ugliest night I have ever seen in 22 years."

The legislation was the cornerstone of Republican's domestic agenda and would extend limited prescription drugs coverage under Medicare to 41 million Americans, including 13 million who had never been covered before. 

At an estimated cost of just under $400 billion over 10 years, it was the largest entitlement program in more than 40 years, and the debate broke down along party lines. 

But when it came time to cast ballots, the Republican leadership discovered that a number of key Republican congressmen had defected and joined the Democrats, arguing that the bill was too expensive and a sellout to the drug companies. Burton and Jones were among them.

"They're suppose to have 15 minutes to leave the voting machines open and it was open for almost three hours," Burton explains. "The votes were there to defeat the bill for two hours and 45 minutes and we had leaders going around and gathering around individuals, trying to twist their arms to get them to change their votes."

Jones says the arm-twisting was horrible.

"We had a good friend from Michigan, Nick Smith, and they threatened to work against his son who wanted to run for his seat when he retired," he recalls. "I saw a woman, a member of the House, a lady, crying when they came around her, trying to get her to change her votes. It was ugly." read here.


photo credit: 1 Boring Old Man

The Diagnosis De Jour: Bipolar Disorder

Via Newsweek Magazine:   MOMMY, AM I REALLY BIPOLAR? 
Hundreds of thousands of children in the U.S. have been wrongly diagnosed with the trendy disorder, argues a noted psychiatrist. And the results can be tragic.  Stuart L. Kaplan, M.D.

"In the autumn of 1994, a novel idea was afoot in my profession. At the annual conference of the American Academy of Child and Adolescent Psychiatry, I attended a workshop on bipolar disorder in children. About 10 of us attended the meeting, held in a small, poorly lit room. Only one or two doctors reported having actually seen a child with bipolar disorder, but we all agreed to keep our eyes open for other sightings.

"Three years later I attended another session about bipolar disorder in children at the academy’s annual meeting. In a large ballroom beneath a gleaming chandelier, several hundred child psychiatrists buzzed with excitement. As a mainstream concept, the diagnosis had arrived." READ here.

Can Psychiatry Provide Client-Centered Family Driven Care?

This story from Stephany's blog is tragic to say the least.  Why are none of the the parent and family advocacy groups known for advocating for children's mental health treatment and family-driven care talking about this?  Advocacy groups bring a message that mental illnesses are the result of a broken and/or diseased brain. In fact declare, the disease can be treated safely, with medication.  Like any other disease.

This  statement denies the real world outcomes of those who are dead and disabled as a result of taking psychiatric medications.  Failing to provide any information on the very real risks, inherent in the medications, while declaring them to be necessary and harmless; particularly for children, is suspect.  Spreading the news about the the safety of medications in the treatment of an ever-expanding catalog of "brain diseases" while failing to provide a balanced view, specifically, real world outcomes of their use; is not advocacy with any integrity, in my humble opinion.

Why is it that biased "Educational Literature" is all that is available to desperate parents looking for help?  Where does it come from?  Many parents and other family members believe the safety and efficacy message without question; they feel informed, empowered even, by being involved with these advocacy and support groups. Advocacy groups are not obligated to, and do not inform those seeking information and support about the Conflicts of Interest which exist in the educational materials used. So called, "Facts on Mental Illness" and "Medication Fact Sheets" distributed often use biased statements, which are opinions, written by marketing departments; NOT information based on science.

The source of the information is not cited or disclosed and is often the drug manufacturers themselves; who pay for the printing and distribution of the materials through donations to the nonprofit advocacy groups.  So, in effect, this literature is more in the nature of direct consumer marketing and advertising of the drugs.  To be educational, (not commercial) would require the information be based on relevant research, and it would require an unbiased presentation of information.  To provide education and advocacy for those who are in need of support in coping with a diagnosis that is ethical and person-centered with transparency; these issues need to be addressed.    Literature which is developed and funded by drug companies would also provide the added benefit of a charitable contribution Income Tax deduction for  the "donor."

A current example of a Conflict of Interest that in my opinion is alarming, CABF, now called The Balanced Mind Foundation, has 6 scientific advisory board members who are currently getting money for working with/for the manufacturers of the medications they are recommending.  One of them, Joseph Biederman, lost his job a Harvard due to research fraud in the research of the diagnosis and treatment of bipolar in children.  Apparently, lack of ethics and fraud now qualifies psychiatrists for an advisory position for a nonprofit advocacy group!

Information on Informed Consent according to the American Medical Association which Psychiatry uses:

Informed consent is more than simply getting a patient to sign a written consent form. It is a process of communication between a patient and physician that results in the patient's authorization or agreement to undergo a specific medical intervention.

In the communications process, you, as the physician providing or performing the treatment and/or procedure (not a delegated representative), should disclose and discuss with your patient:

• The patient's diagnosis, if known;
• The nature and purpose of a proposed treatment or procedure;
• The risks and benefits of a proposed treatment or procedure;
• Alternatives (regardless of their cost or the extent to which the treatment options are covered by health insurance);
• The risks and benefits of the alternative treatment or procedure; and
• The risks and benefits of not receiving or undergoing a treatment or procedure.

In turn, your patient should have an opportunity to ask questions to elicit a better understanding of the treatment or procedure, so that he or she can make an informed decision to proceed or to refuse a particular course of medical intervention.

This communications process, or a variation thereof, is both an ethical obligation and a legal requirement spelled out in statutes and case law in all 50 states.  

In my opinion, Informed Consent does not occur in mental health treatment.  This opinion is based on just under 20 years of accessing mental health care for myself and my two sons.  The first time I read the Ethics Guidelines for Informed Consent approximately 8 years ago, I became profoundly aware of a betrayal of trust that had in fact occurred;  particularly in my son Isaac's care.  I have yet to have one of the conversations described above with a psychiatrist, or any other prescriber of psychiatric medications.  I no longer believe my experience unusual, nor do I believe it is due to my son's mental health services being paid by Medicaid.  Psychiatry as a profession, does not value or comply with The Ethics Guidelines for Informed Consent; in the real world they do not have to.  In the words of one Psychiatrist and children's advocate, "Parents who objected to medical treatment would be seen as at best ill informed and at worst impaired themselves."  

Final Thoughts

How do advocacy groups advocating for medication without acknowledging adverse events and outcomes of long-term medication use affect the current effort to transform the current mental health system in which client-centered and family-driven services are the goal?  


How is the goal in which TRANSPARENCY in all aspects of policy and program development, recognized as a necessary value, being affected by advocacy groups?  This question is specific to groups who receive funding from the pharmaceutical industry directly or indirectly; or whose advisors and/or board members do.

Why is Informed Consent ignored for the practice of mental health care?

Is is possible that everyone who disagrees with a psychiatrist or other mental health prescriber, on a medication issue is "ill informed" or "impaired?"


Does the perception a person is "ill informed" or "impaired" exclude them from client-centered and/or family-driven care and Informed Consent is not required?   

photo credit