NAMI and Drug Makers’ $$$

As a Washington Post reporter, I was trained to “follow the money” so last year when the New York Times published a story about how the National Alliance on Mental Illness had received $23 million from drug makers between 2006 to 2008, I winced. The driving force behind the story was Iowa Republican Senator Charles E. Grassley who was using his congressional powers to investigate the drug industry’s influence on the practice of medicine. 
NAMI’s critics were quick to attack, arguing that NAMI was in the pocket of pharmaceutical companies and that is why it endorsed the so-called “medical model,” which blames severe mental illnesses on chemical imbalances in the brain; backs Assisted Outpatient Treatment, which enables judges to forcibly medicate selective persons who have a history of violence or of not taking medications that help them; and believes that mental disorders can strike children as well as adults.
Obviously, all of us who support NAMI would prefer to have more of an arm’s length relationship with drug makers.
But I don’t believe for a second that drug makers control NAMI and, if I did, I would resign from it.
NAMI’s executive director Michael Fitzpatrick acknowledged at the time of the story that the drug company donations were excessive and that NAMI was working to change that. He didn’t deny it or hide it, which is what happens all too often in Washington D.C. when accusations are made.
More importantly, NAMI announced that it would begin listing on its Web site the names of companies that donate $5,000 or more to it and also list how that money is being spent. NAMI also adopted a strict policy about how it handles donations from drug makers.
I receive emails periodically from anti-psychiatry, anti-pharmaceutical, and a slew of other groups that claim mental disorders either are not real, are not chemically based, are simply ways of enlightened thinking, or can be controlled by other methods besides drugs. Many of these folks send me copies of Sen. Grassley’s NAMI expose.
Here is my standard response.
I believe mental illnesses exist. Why? Not because doctors, drug makers or NAMI have told me so, but because I have a son who became delusional for no apparent reason. He was psychotic and it got him arrested, shot with a Taser, and completely disrupted his life. Don’t tell me that brain disorders aren’t real or are just a way for some folks to think at a higher level than the rest of us. 
I believe anti-psychotic  medications help him control his symptoms, not because doctors, drug makers or NAMI told me so, but because I have seen my son become stable and think more clearly when he is taking his medication.
Is there something else out there that might help him? I hope there is and, quite frankly, I am in favor of anything that works for anyone who gets a mental disorder. I have never believed that there is only one way for persons to improve and I don’t understand why those who have found other methods than drugs are so insistent that their road to recovery is what is best for everyone else.
When it comes to NAMI, outsiders may see it as some huge and evil operation being ruled by a gang in Washington that is pocketing big bucks from drug companies. But I know members of its board, the executive staff and the people who work in Washington D.C. and I have been to NAMI chapters in nearly every state and have met thousands of our members and I can’t identify one of them who is part of some big pharmaceutical conspiracy or who joined NAMI to enrich himself.
Nearly all of our members are parents, just like me, who — if anything – are skeptical of the drugs that their loved ones take because they know about weight gain, diabetes and other worrisome side effects. They do not belong to NAMI because they are backing a political agenda by drug makers. They belong because they care about their loved ones and are trying to help them battle their illnesses.
As a reporter, I knew that advertising revenue is what paid my salary at the Washington Post, but the newspaper built a barrier between the businesses paying my salary and my reporting. NAMI has done the same thing.
Sadly, as long as NAMI accepts one penny from a drug maker, it is going to get criticized, which brings me to a solution.
October is Mental Health Month and NAMI groups across the nation will be participating in NAMI WALKS to call attention to mental disorders and raise needed money. We all know how successful the Avon Walk for Breast Cancer has been.
I would encourage you to walk for mental health this October. Find a team in your area and show your support with your feet and a check.
Because I will be speaking in Portugal during the NAMI WALKS in Virginia this year, I will not be able to join my local team. But Patti and I are making a donation.
For you who are curious, here is a list of what NAMI received during its second quarter and HOW it spent those monies. After reading how the money was spent, I am grateful for the donations!
About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

  • Tgskale

    Powerful. The best I've ever heard this explained. Thank you.

  • Trotrider

    Pete, your comments continue to shed light on the subject of

    Mental Health. Thank you for providing objectivity and balanced information.

    Lisa Sheridan

  • MsP{iggy

    If you actually stood behind your rhetoric, you would join a true patient advocacy group like mindfreedom and separate yourself from NAMI and their seeding corporate marketing base. How about taking a mental health approach that offers real choice, is based in humanity, and not just one sized fits all disease mongering propaganda front.

    If you really wanted to know the truth and remove your one sided blinders; then I would suggest you read Robert Whitaker's “Anatomy of an Epidemic”. He's not anti drug or a denier of mental health conditions. Just gives you the whole picture that NAMI and their backers want hidden away from public scrutiny.

    If your going to apologist for Michael Fitzpatrick a corporate shill, I suggest you doing a little journalist research with some integrity.

  • MilesP

    Dear MsP-iggy,

    You have strong opinions of this subject based on what you have written. Can you share with us specific examples or incidents where NAMI has acted as a “corporate shill” for the drug manufacturers or when NAMI has not been a “true patient advocacy group?” Can you give us examples of what mindfreedom has done to help its members? Specifics are useful. Rhetoric is not. Can you stand up behind your's?

  • Majergens

    I am truly thankful that you are a voice to those of us you otherwise would be heard. As for the naysayers, I suppose they are entitled to their opinions, but my experience with NAMI has been that is has never portrayed itself as anything OTHER than a true patient advocacy group!

  • MsPiggy

    You wanted evidence correct:

    Read a little at these sites and learn MilesP:

    http://alison-bass.blogspot.com/2009/04/nami-exposed-drug-money-behind-this.html

    http://www.madinamerica.com/madinamerica.com/Home/Home.html

    http://www.mindfreedom.org/

    http://www.nytimes.com/2009/10/22/health/22nami.html

    http://www.furiousseasons.com/archives/2006/12/nami_touts_new_atypical.html

    http://www.furiousseasons.com/archives/2009/10/nami_lies_in_nyt_letter_to_the_editor.html

    http://www.furiousseasons.com/archives/2009/10/nami_board_member_was_paid_consultant_to_astrazeneca_on_seroquel.html

    http://www.furiousseasons.com/archives/2009/09/pfizer_got_nami_to_pimp_for_geodon_paid_for_docs_helicopter_flights.html

    http://alison-bass.blogspot.com/2009/04/nami-exposed-drug-money-behind-this.html

    even drug advertising sites:

    http://psychcentral.com/blog/archives/2009/04/07/next-up-nonprofits-and-pharmaceutical-funding/

    NAMI's misinformation campaign is apparent in virtually every press release they issue. “Mental illnesses today are understood to be biological brain disorders, which can be successfully treated and managed at rates even greater than that for heart disease.” this is just one of many examples of NAMI propagating myth/misinformation

    The list of sites and mountains of evidence are overwhelming; but then those that wish to be blind, will stay blinded to the facts no matter what.

  • MilesP

    Thanks for suggesting those sites. I have looked at them and found an awful lot of OPINIONS but where are the facts? You have condemned NAMI for saying exactly what the National Institutes of Mental Health and American Psychiatric Association say. Are they also part of this vast conspiracy?

    As you wrote, those that are blind to the facts stay that way.

  • MsPiggy

    Do you mean the facts you have ignored, or is it just the hard science you have a problem with MilesP?

    It's OK, They believed the Titanic was unsinkable until it was to late….

  • Frtillman

    AMEN Pete you have spoken what I to be true.

    Let the people who ridicule walk a yard in our(parents of the mentally ill) shoes,

  • Chris Long

    Mr. Earley,

    I am wondering if your blog was prompted by last week's story in the Chronicle of Philanthropy, as reported in the New York Times. Here is one of the articles from that September 6, 2010 publication. Notice that it reports that Mental Health America gets 78 percent of its budget from drug makers — although Mental Health America does not reveal this on its webpage.

    If you want to see what other non profit groups accept money from medical related businesses, you should check out this link: http://philanthropy.com/article/How-Health-Nonprofits-Handle/124276/ It is interesting.

    In regard to the debate going on with MindFreedom on your blog, I am curious. Where does it get its funding? I could not find anything on its webpage that discloses the sources of its income. Without full disclosure, how can we know whether it is a shill for the Church of Scientology?

    If MindFreedom wants to show that it is more objective than NAMI, perhaps it should publish a list of its finances.

    How Much Must Charities Disclose About Donors?

    A Senator urges health groups to tell the public how much money they get from medical companies

    September 6, 2010

    By Suzanne Perry

    The National Alliance on Mental Illness includes something on its Web site that is highly unusual in the nonprofit world: detailed, up-to-date information about its donors.

    Each quarter it posts the names of all corporations and foundations that gave the charity more than $5,000, the specific amount they contributed, and how the money was spent.

    Visitors can see, for example, that in the second quarter of 2010, Pfizer paid $35,000 for a corporate membership; Ortho-McNneil-Janssen Pharmaceuticals $60,000 to NAMI Beginnings, the group’s quarterly magazine; and Eli Lilly $250,000 to the Campaign for a Better Tomorrow, a program to help the charity carry out its educational, advocacy, and training programs.

    The alliance, a prominent advocacy group in Arlington, Va., started posting such details last year after Sen. Charles E. Grassley, of Iowa, began to investigate its financial ties to the pharmaceutical industry.

    Now Mr. Grassley— the senior Republican on the Senate Finance Committee—is turning an eye to 33 additional nonprofit medical groups. And he has made it clear he would like them to follow the mental-illness alliance’s lead.

    “These organizations have a lot of influence over public policy, and people rely on their leadership,” he says. “There’s a strong case for disclosure and the accountability that results.”

    Paulette V. Maehara is critical of the request for donor details. “Donors do have rights,” she says.

    Confidentiality of Donors

    While the investigation is focused on medical issues, it could have implications for all charities that receive donations from businesses in areas that overlap with their nonprofit missions.

    The Nature Conservancy, for example, recently came under fire from some supporters who worried that donations from BP were undermining the group’s response to the oil spill in the Gulf of Mexico. The nonprofit group had to spend time trying to allay such concerns, pointing to policies and procedures that they said prevented any undue influence.

    The investigation also challenges the notion, protected by law, that charities have discretion over how much to reveal to the public about their donors.

    “You have to preserve the confidentiality of donors and respect donors’ rights,” says Paulette V. Maehara, president of the Association of Fundraising Professionals. “Donors do have rights regardless of what Senator Grassley might think.”

    Other observers, however, say Senator Grassley is right to examine nonprofit groups as part of his broader effort to unveil the possible influence of corporate cash on doctors, academic researchers, and others who offer medical advice to the public.

    “These patient-advocacy groups have kind of gotten a free pass,” says Howard Brody, director of the Institute for the Medical Humanities at the University of Texas Medical Branch in Galveston, adding that some pharmaceutical companies treat them like “an extension of the marketing department.” The groups’ ties to drug makers have attracted less scrutiny than those of doctors and academic researchers, he says, because charities like the American Cancer Society seem like “God, mother, and apple pie.”

    Wide-Ranging Policies

    The senator has asked the 33 medical groups last December how much money they got from pharmaceutical, medical-device, and insurance companies from 2006 to 2009; who the companies were and how the money was used; and how they disclose where top executives and board members get outside income.

    Senator Grassley’s staff is now combing through hundreds of pages of documents that the groups sent in response, and he could announce his findings as early as this fall. is expected to announce his findings this fall.

    More than half of the groups contacted by Senator Grassley gave The Chronicle all or part of the responses they sent to him (see table).

    A Chronicle review of the medical groups in the Senate investigation found wide-ranging differences in the policies groups have to determine whether to acccept corporate money and when to share information about those payments with others. Some groups, like the American Heart Association and the Heart Rhythm Society, offer specific details about corporate contributions on their Web sites. But others provide just bare-bones information.

    Traditionally, when charities name their contributors—in their annual reports, for example­—they generally just list names, sometimes within general giving categories (like “more than $50,000”).

    The documents the nonprofits provided to The Chronicle show that the groups that Mr. Grassley is examining take in more than $100-million aggregate each year from medical companies in the form of donations, advertising revenue, exhibit fees, corporate memberships, and support for continuing medical education.

    In some cases, the money represents only a small share of the charity’s budget. For example, the American Cancer Society says such revenue totaled $10-million in 2009, or only 1.2 percent of the group’s nationwide income of almost $900-million.

    In other cases, the percentage is hefty­. Mental Health America, a patient-advocacy group in Alexandria, Va., got 78 percent of its $3.2-million in 2009 revenue from medical companies.

    However, a spokesman for the group, Steve Vetzner, says that was an anomaly created by the loss of income from other sources, for example a grant that was not renewed. He says only about 30 percent of the group’s revenues will come from medical companies this year.

    The responses also shine a light on the financial ties between board members and the corporate world, with some groups submitting disclosure forms showing that trustees were stockholders, employees, consultants, or otherwise affiliated with pharmaceutical, medical- device, or insurance companies.

    Backing Legislation

    Senator Grassley has previously quizzed charities about how much they receive from the medical industry. He raised the questions about the National Alliance on Mental Illness last year, citing news reports saying the organization relied heavily on pharmaceutical money (then about 50 percent of its budget, according to a spokesman for the alliance) at a time it was promoting industry-backed legislation.

    He also put the American Heart Association under review in 2008 after Merck and Schering-Plough delayed releasing a delayed releasing a study challenging the effectiveness of the cholesterol-lowering drug Vytorin; Mr. Grassley wanted to know more about a statement the charity had issued encouraging patients not to stop taking the drug without consulting a doctor.

    David Livingston, the association’s general counsel, says his group sent information about who was involved in drafting the statement, how much money it got from pharmaceutical companies, and how much it got specifically from Merck and Schering-Plough (about $3-million to $4-million, or less than 1one percent of its revenue in fiscal year 2008). He says he heard nothing further from Senator Grassley.

    While some fund raisers worry about protecting donors’ privacy, a spokesman for the National Alliance on Mental Illness says the group has received no complaints from foundations or companies adonors about its “full disclosure” policy. Senator Grassley is facing resistance, however, in another case in which he has requested donor information. Donald Berwick, the new head of the federal Centers for Medicare and Medicaid Services, has declined to provide information about contributors to his former employer, the Institute for Healthcare Improvement.

    Senator Grassley requested the information to see if Mr. Berwick had ties to companies in the health-care field that could benefit from his actions. But the Medicare chief said he did not have the power to produce the donor records because they were held by the nonprofit and were not public documents.

    'We Cannot Be Bought’

    Some groups, albeit a tiny minority, have decided the only way they can avoid the appearance that they are corporate shills is to refuse, or sharply limit, industry contributions.

    For example, Breast Cancer Action, in San Francisco—which states on its Web site, “We cannot be bought”—does not accept any money from companies that it says profit from breast cancer, including drug makers.

    “We could use the money,” says Barbara Brenner, the executive director. “But people rely on us for accurate information.”

    She says the patient-advocacy charity does not want to be deterred from criticizing a breast-cancer treatment for fear of alienating a donor. For example, she says, it has urged the Food and Drug Administration not to approve Avastin, a drug produced by Genentech, for use on breast-cancer patients—and she wonders if it would have felt as free to do that if it had received money from the drug maker.

    Senator Grassley, in his letter to the 33 medical groups, cited the decision by H. Richard Lamb, a professor emeritus of psychiatry at the University of Southern California who helped create the National Alliance on Mental Illness, to step down from the group’s board last October because of its “financial dependency” on pharmaceutical revenues.

    “It’s not ethical, as I see it,” Dr. Lamb says now. “For one thing, it seems to me if you are going to take money from drug companies, you should take no position whatsoever on psychopharmaceutical matters.”

    Instead, he says, the group’s executive director, Michael J. Fitzpatrick, co-wrote an article in the journal Psychiatric Services in 2008 urging policy makers not to impose rules that would prevent government health plans like Medicaid from paying for so-called “second generation” antipsychotic drugs for schizophrenia, even though the drugs were more expensive than earlier versions.

    Dr. Lamb says that point of view, which he shares, is “worth many billions of dollars” to the same companies that provide money to the mental-health alliance.

    Mr. Fitzpatrick declines to discuss the journal article, but says that “never in its history, in 31 years, has NAMI been compromised.”

    Mr. Fitzpatrick says the pharmaceutical money helps the group develop public-awareness programs to fight the stigma around mental illness. He says the percentage of the group’s revenues that come from drug makers, however, is expected to fall from about 50 percent in 2008 to less than 40 percent by the end of this year­­—partly because “we’re getting more adept at fund raising from other sources.”

    Dr. Lamb now serves on the board of the Treatment Advocacy Center, a mental-illness advocacy group that does not take pharmaceutical money.

    Benefits to Charity

    The overwhelming majority of nonprofit medical groups do seek out corporate cash as a way to help pay for their work. Douglas Henley, president of the American Academy of Family Physicians, says his group regularly faces pressure from some members to refuse industry money­. But the dollars allow it to offer programs to help doctors better treat patients, he says, and can be “appropriately managed” by following good conflict-of-interest policies.

    “If we didn’t have that revenue, it’s unlikely we could conduct those programs because the only alternative would be to radically raise dues,” he says.

    Carol Weisman, a fund-raising consultant for health charities, in St. Louis, says Senator Grassley’s investigation has raised concern among some groups that advocate for patients with relatively rare diseases that do not have large, powerful pools of donors. “The more devastating the disease, the less likely it is the families can fork over any money,” she says.

    'Science of Reciprocity’

    Some groups under review point to efforts they have been making in recent years to toughen their policies on corporate relations.

    For example, the North American Spine Society, which represents medical spine specialists—a field that has been hit by a series of controversies in recent years over ties to medical-device makers­—has adopted the following changes:

    Required medical-device manufacturers that do business with the group to follow a mandatory code of ethics.

    Created a new position of board ethicist.

    Barred its leaders from speaking at industry-sponsored events.

    Greatly restricted the ability of corporations to blaze their logos on materials at educational events: No sponsorship of hotel keycards, registration-badge lanyards, welcome receptions, or meals. If companies want to provide tote bags, their logos must be hidden inside.

    Furthermore, as of October 2010, no society board members or key leaders will be allowed to accept any industry money for consulting, speaking, or travel.

    Ray Baker, the group’s president, says the society was influenced by the work of David and Sheila Rothman, experts in medical ethics at Columbia University who are advising the group.

    “We really started looking at how even very small things can influence behavior,” Dr. Baker says.

    Studies show that small trinkets can increase donations or sales, according to an article in the American Journal of Bioethics in 2003 about pharmaceutical gifts to doctors that Mr. Rothman cites­. For example, customers spent more money in a pharmacy when the owner gave them a cheap key chain, it says.

    Even doctors, who are trained in the scientific method, can be influenced by the “science of reciprocity,” or the desire to offer something in return, Dr. Baker says. People think, “of course you wouldn’t be influenced by a pen,” he says. “The science is, yes, you will be influenced by a pen.”

  • MsPiggy

    http://www.mindfreedom.org/about-us

    “MindFreedom is one of the very few totally independent groups in the mental health field with no funding from or control by governments, drug companies, religions, corporations, or the mental health system. MindFreedom International is a nonprofit under IRS 501(c)(3) that is the only group of its kind accredited by the United Nations as a Non-Governmental Organization (NGO) with Consultative Roster Status.”

    Of course if you question shady corporate influence it's always “their scientologist”. That is a really poor deflection from the issue and evidence related to NAMI receiving the vast majority of it's funding and their related policies of misinformation while marketing drugs that obviously benefit their corporate donors.

    That's simply called a gross conflict of interest that does not serve patients or their family members.

    I suggest you contact David Oaks, I wouldn't be at all surprised if he was willing to answer any and all your questions regarding pharmaceutical corporate influence related to supposed non-profits.

  • Maria

    Mr. Earley, your point on this issue is well received.

    Parents of the “mentally ill” are certainly in my heart, as are those labeled “mentally ill”.

    I am not a medical professional, so I may not be able to express this information as wel…l as a medical doctor such as Dr. Stephen Genuis from Alberta, Canada would, but I will do the best to my ability. (See below for information on Dr. Genuis, along with his email, I am sure he would love to hear from you-he is not a Scientologist, just a really good medical doctor, husband, father and good guy)

    The role of a profession, in your case that of a journalist, should never superceded that of a concerned parent, looking out for the best interest of their child.

    Understandably, it must be especially difficult for you not to be passionate and promote what has worked for you to achieve keeping your son from being in a psychotic state through the use of psychiatric medications, as NAMI supports.

    We live in a critical time period in which psychiatry is affecting parenthood, as in the cases of Rebecca Riley, Gabriel Myers, Ryan Ehlis and David Crespi have shown. (Information on those cases is posted here http://icspp-icspporg.blogspot.com/)

    Consider at what age should a parent place their child on anti-psychotic medications? Rebecca Riley was only 2 years old, Gabriel Myers was 7.

    As a journalist you are very astute to the fact that there are many perspectives to any opinionated situation and it really is a “fact-finding” mission to figure out who is right and who is wrong, along with much criticism along the way.

    Sometimes it is just a matter of putting all of the pieces of the puzzle together to realize that each side had some right and some wrong, working together their can be a compromising solution to a very difficult situation, as in the case of “mental illness”.

    Please consider the life of the young woman portrayed in your book who chose to abort her child rather than go off of psychiatric medications.

    Should an individual labeled with “mental illness” be prevented from having children? How many parents with children labeled “mentally ill” aware of the US Supreme Court decision Buck v. Bell and Justice Oliver Wendell Holmes statement: “Three generations of imbeciles are enough”?

    Would you view a child of your son who is labeled “mentally ill” differently than any of your other grandchildren?

    Among the so called “anti-psychiatry” and “anti-pharmaceutical” groups are those medical professionals, concerned individuals, organizations and journalists who take a rational, reasonable, objective and scientific approach of recognizing mental disorders are real, they are not only chemically based, but also related to medical conditions, bacteria, viruses, toxic exposure, structural abnormalities and so forth.

    As a journalist this is what you need to investigate further, setting aside for a moment the trust you have that medications are an absolute necessity in all cases of “mental illness” and that sudden psychosis means a person is either bipolar or schizophrenic, doomed to ingest anti-psychotic medications, irregardless of their known harmful side-effect.

    Once again, question the possible relationship to the death of Deidra Sanbourne and the use of the medication Clozapine. Deidra's death was from complications of a bowel obstruction while being treated in a psychiatric ward of a hospital. The medication Clozapine is used to treat severe cases of schizophrenia. Clinical research suggests Clozapine has caused bowel obstructions leading to death in schizophrenic patients. Deidra Sanbourne could very well have died from the medication she was administered while being treated for her symptoms of schizophrenia under the care of medical professionals.

    Look towards the meaning of words for directions: Psychiatry literally means “medical treatment of the mind”.

    The word psychology, derived from Ancient Greek (psychee, meaning “breath”, “spirit”, or “soul”); (-logia, translated as “study of”) literally means, “study of the soul”.

    There are many branches of psychology researching perception, cognition, attention, emotion, motivation, brain functioning, personality, behavior, and interpersonal relationships, so there are many different philosophical views/beliefs and treatment approaches of symptoms of mental illness. Does psychology have any role in treating symptoms of “mental illness”?

    Main stream psychiatry concentrates on “medication management”, a pharmacological approach of treating symptoms classified as mental illness which overshadows integrative, holistic and orthomolecular approaches of psychiatry.

    Orthomolecular is a term that comes from ortho, which is Greek for “correct” or “right,” and “molecule,” which is the simplest structure that displays the characteristics of a compound. So it literally means the “right molecule.”

    Two-time Nobel Prize winner, and molecular biologist, Linus Pauling, PhD coined the term “Orthomolecular” in his 1968 article “Orthomolecular Psychiatry” in the journal “Science.”

    Orthomolecular medicine describes the practice of preventing and treating disease by providing the body with optimal amounts of substances which are natural to the body.

    As a parent who has the best interest of their child at stake, please consider learning more from doctors like Dr. Stephen Genuis and doctors who have continued using the effective approach of Dr. Linus Pauling and Abram Hoffer.

    If you are able to find flaws in their work, then you certainly deserve a Nobel Peace Prize yourself.

    “Toxic causes of mental illness are overlooked” Dr. Genuis

    http://investigatingmentalillness.blogspot.com/2010/01/toxic-causes-of-mental-illenss-are.html

    http://a-medicine-of-hope.blogspot.com/2009/05/mood-disorders-causes-and-solutions-dr.htmlSee More

  • Guest

    D. J. Jaffee has just written a blog for the Huffington Post that takes issue with your blog. Here is his viewpoint

    By D. J. Jaffee

    Does the National Alliance on Mental Illness represent seriously mentally ill?

    Huffington Post

    Sept. 14, 12:30 p.m.

    Pete Early, author of Crazy, one of the best books on mental illness, recently blogged on the issue of whether pharmaceutical money drives the agenda of the National Alliance on Mental Illness (NAMI). This is important, because NAMI bills itself as “the nation's largest grassroots organization dedicated to improving the lives of individuals and families with mental Illness”. Pete says:

    I don't believe for a second that drug makers control NAMI and, if I did, I would resign from it.

    While I usually agree wholeheartedly with everything Pete Early writes, as a former NAMI board member, I do think pharmaceutical money controls NAMI and I don't think he should resign. Like all us NAMI members, he should work to change it. NAMI is the only hope we have, but we have to get it back on track.

    I remember four insidious effects of pharmaceutical money:

    When Sandoz (ADR) marketed Clozaril, the first atypical antipsychotic, they tied buying the medicine to buying blood monitoring services from their subsidiary Caremark. This greatly inflated the price and made it harder to get. Everyone –but NAMI–was outraged. Medicare and states were refusing to pay for it. Hospitals wouldn't administer it. Attorney Generals were suing.The Wall St. Journal and NY Times reported on the problem. Yet NAMIs position throughout was “we need more information”. Sandoz was a major NAMI funder.

    When Eli Lilly the makers of the atypical antipsychotic Olanzapine came out with a 'scholarship program' (educational grant scholarships conditional on taking the drug), the NAMI membership was instantly revolted by what was in essence a bribe to take it (why not lower the price, rather than inflate it to pay for the bribe?). In addition, what would happen if you went off the med? Lose the scholarship? Dr. E. Fuller Torrey brought the concerns to the media's attention in the New York Times, in the same article, NAMI issued supporting communications. Eli Lilly was a NAMI contributer.

    When NAMI was deluged with calls from their own members that Janssen's (JNJ) Respiridol caused dangerous weight gain ,it took the FDA to lead an investigation that NAMI wouldn't even tell them needed investigation. Janssen was a NAMI contributor.

    When Tennessee's managed care program, TennCare,was introduced, members flooded NAMIs office with info it was a complete disaster. People were being kicked off the program, out of hospitals and had problem getting in in the first place. It was newspapers, not NAMI, that exposed the disaster, which continues today. Meanwhile, NAMI gave TennCare an award, articles in their newsletter, and lots of visibility. TennCare was a NAMI donor.

    * * *

    But there is another effect that pharmaceutical money has had on NAMI that is even more profound and hurtful: It has caused unbridled mission-creep. It used to be (long time ago), that NAMI advocated for those with serious mental illness, and the Mental Health Association (America), advocated for all others. As a result of pharmaceutical and government funding that distinction no longer exists. No one advocates for the seriously ill.

    Funding is to blame:

    Once Pfizer (PFE), the makers of Zoloft (my drug of choice), Eli Lilly (LLY), the makers of Prozac and other meds for depression, anxiety, sleep disorders, etc started funding NAMI, NAMI's 'mission' broadened.

    Government money supplemented this pharmaceutical money to further drive mission creep. Money available for 'mental illness in children' has caused NAMI to jump on that bandwagon and now cover kids with 'learning disabilities' 'behavioral issues' 'ADHD', 'sadness', 'bad grades' etc. In fact, while science has shown there is no way to prevent schizophrenia, NAMI is engaged in 'prevention' education for 'at risk' children.

    In fact, NAMIs “message” is no longer that the “people with serious mental illness need help”, the “new” message is “the mentally ill are just like you and me and with proper supports can become productive members of society”. In fact, the seriously mentally ill (homeless, incarcerated or institutionalized) are not allowed to be shown in NAMI materials. Only the happy well need apply.

    For seven years, the NAMI board, would not consider a mechanism to develop a policy on involuntary treatment, much less develop the policy. Why? The consumertocracy representing those who are less seriously symptomatic (mission-creep), objected. The local NAMI eventually had to use a procedural process (go around the board and put it to a direct vote of the entire membership), to get something passed. The NAMI membership overwhelmingly supported this policy the NAMI board wouldn't even consider.

    NAMI should priortize implementation of this most important policy.

    Saving hospitals is another area. While psychiatric hospitals were being closed en-masse, during transinstitutionalization (the movement of people with mental illness from hospitals to jails) NAMI stood silent, only saying that the proceeds from sales of hospitals and savings from closure should be reinvested in the community. Like that happened. To NAMI's great credit, they have recently taken the lead in this issue by working to change the government policy responsible for hospital closures.

    What's the solution?

    One would be to reorient NAMI so it focuses on the seriously mentally ill. Someone suggested that that would be relatively easy, by forming a party to take over board which could be accomplished after two or three election cycles. I'm not so sure.

    Another would be to form a separate organization.

    I love NAMI, but there does need to be an organization that focuses on serious mental illness.

    Sorry, Pete.

  • advocate4change

    As Pete mentioned, I too am unaware of any conflict of interest between the pharmaceutical companies and NAMI, but feel that it would be best to find funding sources elsewhere because of the image it portrays to the public.

    I would also say, though, that I am so very thankful to the manufacturer of the medication my daughter is currently taking because is has helped her immensely. If the pharmaceutical industry wants to improve their image, they should constantly be working to decrease and maybe even eliminate the side-effects which are a part of most medications, including those prescribed for mental illnesses.

    My major concern regarding funding for NAMI is not with the pharmaceutical companies but at the state and local government levels under the Department of Public Welfare.

    A major portion of the funding for our state organization is through our Office of Mental Health and Substance Abuse Services (OMHSAS). A few years ago, our executive director was quoted in the newspaper that a report should first be provided on where individuals would be relocated before closing the next in a series of state hospitals. The head of OMHSAS was furious and made it known that it unacceptable to question the closing of any hospital. The consumer groups in our state who also receive most of their funding from OMHSAS, including our local Mental Health Association, also supported the closures and had no concerns at all about where these individuals with severe mental illness might be placed in the community.

    At an OMHSAS Forensic work group in 2006, we were divided into three groups, one on “jail diversion.” One of the suggestions from a participant in this group was to discuss assisted outpatient treatment (AOT). At the meeting the following month, we received a directive from the head of OMHSAS that we were not even allowed to mention AOT at any future meetings because it went against a document created by the major consumer organizations in our state called, “A Call for Change to a Recovery-Oriented Mental Health System for Adults” which stipulates that all programs and services in our state must be self-determined and the choice of the individual, regardless if that individual suffers from the symptom of anosognosia (lack of insight), although those words exact words are never mentioned.

    Currently, one of our local NAMI chapters who received funding from their county have been told that they can no longer spend the funds they receive from them for any advocacy efforts. The reason – they had the audacity to sign a resolution in support of our AOT legislation. They are my heroes right now because they plan to separate from the county and find ways to raise funds on their own so that they can continue doing the advocacy work for those for severe mental illness, as NAMI was originally founded to do. Anyone who has any great fundraising ideas, in addition to the NAMI Walks, please share them with us.

    Also like Pete, I am an advocate for Crisis Intervention Training (CIT) and some of the members of my local NAMI Chapter advocated successfully to have that training in our county. I was asked to participate as a parent and give my “family perspective.” During the three presentations I gave, I spent the last five minutes of my twenty minute presentation talking about how I believed the solution to my daughter’s constant crisis and hospitalizations was to pass our state’s assisted outpatient treatment legislation so that she could have received the treatment she needed and deserved while at home, instead of in the hospital. The CIT Advisory Committee received an email a couple of weeks ago from the Director of our County Mental Health agency stating that AOT should not be part of the curriculum and it shouldn’t be promoted at this training. Again, our NAMI Chapter receives the majority of their funding from the county and this committee will be deciding today whether or not our county can dictate what a NAMI family member can say during five minutes of their “family perspective.”

    I think it would benefit NAMI if they cut ties with any organization that could stand in the way of the important advocacy work that needs to be accomplished to help those with mental illness. I also agree with DJ Jaffe that NAMI should focus more of their efforts on advocating for those with the most severe mental illnesses who need the most help.

  • malone2310

    I am the mother of 26 year old son that had a psychotic break at the age of 21. It has been a long five years and many different combinations of medications. If it had not been for NAMI and the support the people gave me I am not sure that I would have made it through. NAMI is the people, NAMI are the many different support groups and educational information they provide. NAMI is the only group available to help our family’s in times of crisis. Ok, so they have taken donations from pharmaceutical companies. Can we look beyond this and see what good they have done for so many people that are devastated by mental illness each and everyday?

    The sheer shock alone of a psychotic episode of a loved one is one of the worst things a family has to endure. I am thankful for NAMI and all that they do for me and my family.

  • http://pulse.yahoo.com/_J3GXXNWHDHMP53ED45D5NKKV6A Maria

    I can understand your feelings that having a loved one go through a psychotic episode is one of the worth things a family has to endure, it is also an extremely unpleasant situation for the individual who endures the psychosis, the experience of psychiatric hospitalizations, the stigmatism of being labeled “psychotic” and the numerous side-effects of psychiatric medications.

    NAMI’s support groups and assistance to the families at the time of the crisis are an excellent resource and the finacial support they receive from the drug companies is certainly put to good use to help the families through the crisis.

    The most important matter to consider during the shock of a psychotic episode is the considation of underlying medical conditions and substances that manifest as psychosis and can be overlooked by medical professionals. (Much like cases of psychosis that the TV doctor, Dr. House has figured out and cured)

    NAMI is the largest organization that creates “mental illness” awareness.

    What individuals who experience a psychotic episode need to be aware of the most are the underlying medical conditions and substances, such as exposure to Lead, that can manifest as psychosis/mania and are commonly labeled as bipolar disorder or schizophrenia.

    Recognizing and treating the underlying condition of psychosis means there is no need for years of many different combinations of medications. An individual actually gets better and unfortunately drug companies loose money.

    I am not a medical professional, but I was labeled with Bipolar Disorder, when in fact I had experienced an acute manic episode, with psychotic features as a result of toxic encephalopathy.

    I take every opportunity I can to pass this information along to others and I am not a Scientologist, nor do I accept money from pharmacuetical companies, I am just an individual who would like others to get access to the help they need without having to fight for it like I did.
    http://investigatingmentalillness.blogspot.com/