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

If Gov’t fully funded the HAG’s taking large donations from Pharma’s would not be as necessary.

When Congress calls for transparency you can be quiet safe in believing that equates to less transparency. That has certainly been the case in the last two administrations.

I attended a NAMI meeting recently and speakers from the mental health groups were there. Folks the news for needed mental health services is trouble some. The first thing Gov’t slashes.

No one could know if the gent in Arizona should he have received intervention, administered the best anti-psychotic drugs the incident in Tuscan may have not come to pass.

The HAG’s do a good job but even though this is true money does corrupt. And they surely understand that the Pharma’s have an inordinate stake in their continued support for ever more research and dissemination of new drugs. 

Now with that said Congress should be more transparent in their raking in of Pharma lobbying monies. This applies as well to the taking of donations for campaign funds.

I think the HAG’s are between a rock and a very hard spot.

HAG’s are surely between a rock & a hard place, but a major overhaul of the entire health advocacy system, in fact a major overhaul of all advocacy systems, aka lobbying efforts, is vital to the efficacy, the honesty and the appropriate handling of all matters public and important to the health and welfare of the people of the U.S.

Finances cannot govern the work of any lobbying effort without dictating the direction of solutions.  Not possible.

Betsy Jacobson

I am surprised that the article did not list those organization not reporting these monies/  I would imagine though, that each was reported as a separate line item (as I believe is required) on their NFP tax forms though.  No?

I like you, Hal. Reporting NFP monies as a separate line item on tax forms?  This is too, too honest.  It IS the way it should be, but it ain’t.

Forgive my simplistic approach to all of this, but if Big Pharma and advocacy groups were really, really interested in helping humankind, they’d be looking for and advocating for CURES. 

No-one is.  Only medicaitons that make people feel better are marketed and researched. If a CURE were found, it would reduce the bottom line of pharmaceuticals, because the patient wouldn’t need to take any more meds after they’re CURED.  It’s much more profitable to find helpful, feel better meds for patients to take for the rest of their lives.

CURES should have started emerging at least 25 years ago.

Even the organizations we thought had the public in its best interest are corrupt.  Who can we trust?

Kudos to Marian Wang and ProPublica for another excellent report!

A significant number of non-profit advocacy organizations are funded – directly or indirectly – by the pharmaceutical industry.  Drug companies use these 501c3s as tax-deductible marketing venues to push dangerous tax-funded drugs and questionable treatments .  Some of the more extreme organizations (i.e. Act Up, Housing Works and Treatment Action Group) attack legislators and critics who question the illegal marketing of drugs that kill or injure more than a million Americans annually.

Many of these non-profits maintain lavish offices and stage annual parties where clueless celebrities help the drug industry look like good citizens.  In return, these groups produce or parrot marketing information under the pretext of compassion and human rights.  Those critical of the arrangement are often targeted as anti-medicine or, as in the case of AIDS advocacy, anti-gay bigots.

ProPublica’s exposure of this arrangement is a breath of fresh air.  OMSJ hopes that they will continue to demonstrate what real journalism was intended to be.

Clark Baker
Principal Investigator
OMSJ, Inc.

Doesn’t make sense to constantly blame America’s decline on our admittedly troubled educational system when everywhere - everywhere - you look the problem is greed-driven corruption.

I am completely and utterly disappointed with the article “Efforts to Undermine Public Health” which examines the relationships between health advocacy organizations and the pharmaceutical industry. I’ve worked with many non-profit health organizations over the last twenty years - several of whom are named in the article - and take great exception to the characterization of their relationships with pharmaceutical companies.

Given the nature and scope of our health care system, it is inevitable that health advocacy organizations and pharmaceutical companies have overlapping and shared interests. That a company would choose to fund initiatives in alignment with their business interests is also inevitable, and not surprising; would you expect Halliburton or General Motors to fund a cardiac health awareness campaign? And while I agree that disclosure of these relationships is beneficial, their mere presence does not constitute de facto “conflict of interest” or “biases” as the article strongly implies.

In the 1990s I served as the National Director of Advocacy for the American Diabetes Association. At the time, insurance companies routinely denied patients coverage for necessary diabetes supplies - insulin, meters, testing strips and syringes. To address this problem, the Association launched a nationwide advocacy campaign to enact laws to require coverage for these items. This campaign was supported, in small part, through the sponsorship and technical support of Eli Lilly and other companies.

As a result of our efforts, nearly 40 states enacted laws requiring coverage of these items; Congress also enacted a law that required Medicare to improve its coverage for these medical supplies. Did our corporate partners benefit from the enactment of these laws? Most assuredly. But the real winners in this campaign were the millions of Americans affected by diabetes who, prior to the laws enactment, were unable to obtain these necessary medical supplies and effectively manage their condition.

This was made clear to me one morning during a summer vacation in Maine. Seated at a small town lunch counter, a woman overheard my conversation and approached me. “Were you involved with the diabetes campaign here in Maine?” she asked. I responded yes and she said that for the first time, her elderly father could now obtain the test strips and insulin he needed to effectively manage his type 2 diabetes. “Thank you,” she said, almost in tears. “You have no idea how much this has changed our lives.”

That conversation took place more than a dozen years ago, but I still remember it vividly. It reinforced to me why we launched our campaign, and the positive impact we could have on peoples lives. That is what health advocacy organizations do, on a daily basis. This article not only discredits that honorable work, but demonstrates a stunning lack of understanding about their missions, the people that work there, their millions of committed volunteers and the needs of the people they represent.

–
Joseph LaMountain
President, SparkLight Communications
Adjunct Faculty, Georgetown University
106 E Cliff Street
Alexandria, VA 22301
202.288.5124 (cell)
http://www.joeandmimi.com

The authors of the American Journal of Public Health article failed to point out that all patient advocacy organizations that are members of the National Health Council, the leading national organization for patient advocacy organizations, must meet a Standards of Excellence® Certification Program (http://www.nationalhealthcouncil.org/forms/soe.pdf), which states the organization “must have a written board-approved policy that … MANDATES the disclosure of financial support received as a result of the corporate relationship.”

The authors even acknowledge in their article that their search of health advocacy organization websites was inadequate to conclude whether HAOs disclose all financial support, and the data they presented contradicted their assertion that increased donations in certain therapeutic areas influenced sales.

Nancy Hughes
Assistant Vice President, Communications and Marketing
National Health Council

Full disclosure isn’t asking too much.  If the health care industry, insurance industry, advocacy groups, pharma companies can do this one thing, the trust and respect of the public might be restored, but until then, we will continue to read these kinds of articles. I don’t believe that the article states anywhere that the American Diabetes Association is not a respectable organization, nor did it discredit its purpose or track record.  The pharmaceutical companies, however, have laid the foundation of mistrust and suspicion for themselves…ANY organization with financial ties and/or funding ties no matter how benign or beneficial they may be, is going to be scrutinized and placed under the microscope going forward.

I wonder how many of the associations also receive funding from insurance companies? Did you look? Everyone has an agenda not just Big Pharma.

That said however, these types of financial connections should always be carefully scrutinized.

But, the assumption that all such associations always mean there is misconduct is simplistic. Such thinking may even lead to erroneous conclusions.

Receipt of funds is just a flag not misconduct in and of itself although it should be reported - if it’s all above board why wouldn’t you?

See my 2006 Washington Post story and 2005 master’s thesis on this very topic. Tinker Ready

January 7, 2006, The Washington Post:  Divided Loyalties? Nonprofit Health Advocacy Groups Like to Portray Themselves as Patients’ Allies. Can They Serve Corporate Benefactors at the Same Time? Lead story, “Health” section.

http://www.washingtonpost.com/wp-dyn/content/article/2006/02/06/AR2006020601180.html

The relationship between the medical industry and health care charities:
A challenge for journalists
by
Tinker Ready
http://home.comcast.net/~tinkerr/thesis/thesis.htm

Joseph LaMountain’s objections are understandable.  Although he uses his position at Georgetown University to imply credibility, he doesn’t mention that GU receives more than $200 million a year in grants and funding from the NIH, which funds many of these advocacy groups – often in collaboration with the pharmaceutical industry.

This funding encourages universities like Georgetown and Berkeley to attack and discredit professors and students who raise embarrassing questions about industry corruption and NIH complicity.  In 2010, one UC Berkeley professor was accused of scientific misconduct by numerous pharmaceutical goons, while another adjunct Georgetown professor lost his contact after a pharmaceutically-funded junk doctor raised false allegations against him.  GU didn’t care that the accuser was an unemployed doctor, a pathological liar and a defendant in another active libel case.  When forced to decide between $200 million in annual funding or the retention of an honest professor, the law professor (and his students) lost.

LaMountain’s Sparklight Communications lists clients like the COPD Foundation, which receives funding from GlaxoSmithKline (GSK).  GSK expects to pay $2.4 billion to settle criminal and civil complaints related to Paxil, a drug known to cause depression, suicidal and homicidal ideation.  The COPD Foundation uses GSK funding to pay Sparklight to market the foundation, which markets GSK drugs and treatments.  Unfortunately, the vast majority of the Foundation’s COPD experts are drug company shills that exploit the sick and support noisy advocates who are paid to push pharma marketing schemes.

Nobel Laureate Luc Montagnier MD said it best in 2007, when he admitted that HIV can be cured within weeks with clean water and good nutrition, but that the NIH and drug companies push drugs and vaccines because they cannot generate billion dollar profits by selling good nutrition.

http://www.omsj.org/multimedia/nobel-laureate-exposes-scam

Since 2004, the drug industry has paid $9 billion to settle thousands of criminal and civil complaints related to the illegal marketing of drugs that, according to AMA estimates, kill or injure more than a million Americans annually.  If tracked like real diseases, preventable adverse drug reactions would rank between the 4th and 6th leading cause of death in the United States – a mortality ranking far above the diseases that most of LaMountain’s clients make noise about.  JAMA. 1998;279(15):1200-1205 (doi:10.1001/jama.279.15.1200).

If you read what I said in the beginning of my comment, I mentioned full disclosure from…“the health care industry, insurance industry…”  The article is specifically about big pharma tho, and that’s what I commented on. Your comment that…“the assumption that all such associations always mean there is misconduct is simplistic” is correct, but as I said, big pharma has a sullied reputation…if the recipients of their donations don’t disclose the funding truthfully and in it’s entirety, even tho it’s all “above board”, bright red flags are going to wave.

Kate:

When most industries harm customers, investigators suspend operations, force recalls and ground airplanes, which can result in crippling losses or bankruptcy.  But when the healthcare and drug industries harm customers, these industries actually profit by adding more drugs and treatments to help the patients they injured recover. JAMA, December 21 1994-vol 272, No. 23 “Error in Medicine,” Leape.

If tracked like real diseases, preventable adverse drug reactions (ADRs) would rank between the 4th and 6th leading cause of death in the United States –far above the diseases that most advocates make noise about.  JAMA. 1998;279(15):1200-1205 (doi:10.1001/jama.279.15.1200).

The drug industry has paid $9 billion since 2004 to settle thousands of criminal and civil complaints related to the illegal marketing of drugs that, according to AMA reports, kill or injure more than a million Americans ANNUALLY.  But when Glaxo and Eli Lilly pay $1 billion to settle complaints about a drug that generates revenues of $4 billion/year, the fines represent little more than a calculated business expense.

The AMA reports that infectious diseases became statistically irrelevant in the US by about 1955 (through 1999) – a period that included all flu (and AIDS) pandemics throughout the 20th century. JAMA. 1999;281(1):61-66 (doi:10.1001/jama.281.1.61)

These verifiable facts mean that Americans are more likely to be injured or killed by drugs than by the diseases they allegedly fight or prevent – a fact that wouldn’t generate funding much from the NIH, CDC or drug companies if disclosed.

Clark Baker
Principal Investigator
OMSJ, Inc.

Mr Baker:  EXACTLY!  You don’t have to convince me!  You’re “preachin’ to the choir”!  Unfortunately, too many people rely on gov’t “oversight”, completely blind or indifferent to the ugly, greedy truth of the situation. I can only take care of my family, as a wife and mother of 2 boys. I rarely use medication in my home…occasional ibuprofen for intense pain, when it occurs, but not much more than that. On the, fortunately, rare occasion that one of us does get ill, with a cold for example, we use vicks vapor rub, silver sinus nasal spray, to fight sinus infections, and vitamin supplementation, as well as extra attention to nutrition and rest. I don’t let my children go to school ill, as I am able to stay home with them.  I took it upon myself to be my children’s health advocate long ago.  Had some really bad experiences with doctors: 1 who was scalpel happy…did 2 sets of tubes on my son, wanted to do another surgery…got a second opinion after moving to another state in which I was informed that his ears were perfectly fine!!  Then had another doctor who tried to get me to put my younger son on a daily dose of Advair for allergy induced asthma, year round, whether he was having issues of not…that was just a no-brainer.  Not everyone is like me tho.. many people have let their docs tell them how to take care of their children and themselves instead of doing their own research.  With that said, someone has to police the health care industry, so articles like this should always be available, and the drums should beat loud and clear for us all, even those who refuse to listen to it.

I am heartened to see this sort of reporting and investigation into this deeply criminal element in our society. BigPharma these days makes drug cartels look like benign paper route businesses by comparison. It has come to the point where scientific studies are suspect and one has to become very alert to fraud in the care of one’s own health. Dr. Mark Hyman has a sobering take on this: http://organicconnectmag.com/wp/2010/10/science-for-sale-protect-yourself-from-medical-research-deception/

A phone conversation today reminded me that these problems are often exacerbated by us the patients. We have grown up adoring and respecting our doctors and whatever they prescribe is ok with us, because they are so wonderful and brilliant.

Wrong.

I spoke today with a close friend whose doctor daughter nearly killed her having approved her mother’s doctor’s prescribing of a drug still in phase 3 of its trial. She was on her way to hospice when a friend made her, almost with force, start dialysis and stop taking the drug.  She’s alive and well now.

Yet today, having another illness, that same friend, who is quite bright, dutifully listened to her daughter ,the doctor, once more, and is taking a drug that isn’t helping her at all. (Her husband was also a doctor.)  But she’s not just a doting mother & widow.  She thinks that all doctors are always right. (She knows to refuse to tell me what drugs she takes because I’d insist that she investigate them.  Who am I?  Not an MD. Not anyone important.)

We allow our doctors to make us worse.  I’m a self-styled patient advocate and health activist, and I’ve begged the 25,000+ patients who have come to me to please learn about every drug they take and become strong self advocates (something doctors don’t love).  But where should they learn about their drugs? On whose information should they rely?

This is a vicious cycle.  We elevate doctors to sainthood, Big Pharma majorly governs their prescribing efforts and knows that we, the patients, will adoringly accept whatever they prescribe no matter the price, (and what could more respectful than the involvement of a Harvard or a Georgetown?) and the health insurance industry’s bottom line swells accordingly.

And until we all become “bad patients,” as Elizabeth Cohen calls anyone who self advocates in her book, The Empowered Patient,  I don’t see much support for a change in the industry.

Thank you, thank you, thank you, Clark Baker, for what you do.  I’m delighted to have “met” you. I think you’re terrific.

Paul,

This is wandering far afield in my opinion, but I am familiar with the social medicine theory of “medicalization” and the history of the movement against artificial interventions such as drugs, devices and surgery.

I merely noted that Big Pharma is not the only game in town when it comes to “black hats” and that association is not the same as guilt. You’ll find the same concept in the American justice system.

I never said there wasn’t cause to look more closely in fact I recommended it specifically.

As for “statistically insignificant” infectious diseases that still kill in the millions world wide I think it matters very much to those statistically insignificant individuals whether they die or not. Or whether they are disabled by infectious disease. And whether so-called artificial interventions can prevent such deaths or contraction of such a disease in the first place, cure infectious disease or mitigate infectious disease. To suggest otherwise could be viewed as callous.

That both synthetic and “natural” chemicals have side effects under certain circumstances is rather obvious. And everyone can recount a harrowing tale of someone who died because of one. Just as many can recount an uplifting tale about someone saved by such intervention. 

It is the job of journalists to look beneath the surface, ask the same questions of all parties and present a balanced presentation otherwise known as reliable, accurate facts in meaningful context.

The world is rarely as black and white as you paint it, but it is good to know that you are not indifferent - that would be far worse.

This finding does not really surprise me. It would be interesting to do more research on other pharmaceutical companies and where there money goes in order to see other influences they may have.

-
Student Pharmacist Desk
http://www.studentpharmacistdesk.com

Mostly, dear pharmacy student, the money goes into the pockets of the people who run the pharmaceutical companies.  That’s the point of the criminality of it all.  Patients don’t benefit nearly as much as the corporations do.

It’s sad to see that NAMI can’t let go of the Mind of America tag line when it comes to pharmaceutical funding. After all, there was NAMI Antistigma Foundation (NASF) which later became the Mind of America Foundation. The relationship between the “founding members” of the NASF and NAMI was described on pages 16 and 17 of NAMI’s 6/30/00 IRS form 990. On Pg. 17, Footnote 2: II A “NAMI will cooperate with these entities to “grow the market” .......”

As a mental health consumer, a family member, and a NAMI member I continue to wonder whose interests NAMI puts first. It seems its efforts are primarily directed at getting people into treatment with little consideration of what treatment is available and the outcomes it fosters. Where treatment is so often medication alone Lilly and others continue to enjoy a growing market.

Financial sponsorships, support, and creation of HAGs by Big Biopharma companies is part of a marketing strategy continuum interlinked with the much more visible industry ties with physicians and every healthcare profession.  One reason that the tactic has been so successful is the dysfunction of health systems.  The services and semblance of “caring” offered by industry to patient groups can be very appealing , and so sophisticated that the cynical manipulation of desperation is not readily apparent.

The scenario is linked also to the lack of progress we are seeing on the policy changes needed to assure genuine access to medicines.
While complaints about the exorbitant price of medicines are starting to become common now in wealthy countries too,  we almost never hear mainstream HAGs demanding that prices be controlled.  The ties that bind are very powerful.

Sunshine on industry funding is an important first step needed to create awareness of what is actually going on. In the US, a good start would be changing IRS rules that currently do not require charities to disclose who their donors are. Some of course do, but in the health field, this is not common.

Joana Ramos
http://healthwatched.org/

I wonder about the way patents are regulated and the whole ethical dilemma therein. There is the issue of pharmaceutical companies buying the personal and license data of doctors for sales targeting, and who it is that sells them that data. Free Market? Academic and private research is bridled and steered by patents. Individual drugs can be touted by the salesperson as having uses and properties that are contrary to the scientific research (Darvon is one of many cases).
If I owned a small business, than not only the product quality and consistency matter, but customer relationships on a real level are key to my growing of the company. Optimally, I would want my children to grow up with and go to school with my customers children. All of the social aspects that can be a part of that relationship are things that I would want to be a part of my relationship with the customers in my community, even Starbucks started very small. If my company does actually grow to the size of say GlaxoSmithKline, three guys names?.. than those relationships which I may have husbanded to profitable fruition, may become unethical.
I do believe that the free market is key to both research and growth sustainability. That free market does have to have honest regulation, and patents for health-care related, bio or genetic, and more, do present ethical dilemmas which we must function within.

I am new to this site, as I clicked on a link from an article I was reading, and it linked me to this site, which I find truly facinating. I work for an insurance company and for obvious reasons, I will not disclose it, but all this talk of the pharmaceutical companies using doctors to market their drugs is, to say the least, frightneneing.  Now what I see on my side of the street is that the drug companies will not budge on the pricing of these needed medications when a person actually requires this medication thus forcing the consumer to pay outrageous prices for medication. Especially if the consumer does not have insurance.  The senior citizens that I constantly work with and for, are in need of some relief from these incredible costs.  This so called “donut hole” and tier levels for differnet pricing of medications is outrageous.  I am sickened by what I face everyday when I have to deal with a member who is crying on the phone becuase they cant afford their medication.  The horror stories of the enrollment issues taking place with so called plans designed to save a member money which in fact, do not. And believe me when I say this, it is only getting worse. And because I am saddened by what I hear every day, and figure that one day I will be in the same shoes. I want to do something about it now.  I recieve phone calls all day long from members of this insurance company and my first and most foremost thought, is to help the person on the other line.  Customer service is my number one prority.  But, as a nation in crisis on so many levels, we the people are not doing enough to help our fellow man.  Lets wake up people and take care of our fellow man and woman. I am doing my part in some small way, but continue to increase my awareness and do alot of research and I do write letters to the lawmakers and post comments such as this one and on other sites   Please, everyone out their needs to stand up and realize that there are more of US then THEM. And if we all stand up to the powers that be, we can get what we need and want.

Amidst the impassioned comments about concealing tainted money there seems to be a remarkable lack of concern for the vital context of the medical ignorance of our citizens—-compounded by issues of stigmatization (syphilis,AIDS,cancer,mental,addiction,etc.) ,as well as the lack of ready access to continued,informed, expert medical care.
That organizations that sought to inform our citizenry about such problems should have received support from industries hoping to profit from market building should be obvious. That some well meaning groups may have been shortsighted enough to misunderstand how easily one can be condemned re transparency—even if not actually dishonestly swayed—is too bad.
But I remain shocked that those who pummel these sinners remain indifferent to the far more important issues of ignorance ,stigma and lack of effective care.. Or perhaps it is not indifference but falling prey to those seizing on a diversion.

Ignorance is, indeed, the primary reason that tainted money continues to circulate.  The malicious hiding of the truth, of course, furthers the persistence of ignorance and keeps the corporate bottom line every growing.

Who has some good ideas about reducing or eliminating this ignorance?

Ignorance is, indeed, the primary reason that tainted money continues to circulate.  The malicious hiding of the truth, of course, furthers the persistence of ignorance and keeps the corporate bottom line ever growing.

Who has some good ideas about reducing or eliminating this ignorance?

Answer: Encourage more patient advocacy organizations to join the National Health Council because it MADATES these organizations disclose financial support received as a result of the corporate relationship.

I hate to be madam gloom and doom, but even if every org. reports financial support, it will still continue, and industry will find ways of hiding its marketing influence.

I still get occasional pharma gifts in the mail, by the way, and I’m not even a doctor.  I AM a disease activist with a very negative attitude toward ANYone who wishes in any small way to buy me off. (I don’t even remember who sends me the gifts.)  I have colleagues who make bundles from Big Pharma, and only 2 of us who are major national activists in our field don’t take a dime.  I’m also about to lose my home in a month, but I still cannot be bought.

The “buying” process is wildly wide spread.  Trust me.

NAMI is nothing more than a front-group for Pharma.

The long-term use of psychiatric drugs impedes recovery, and causes disability for the vast majority of people.

Friends don’t let friends join NAMI.

Duane Sherry, M.S.
discoverandrecover.wordpress.com

What are organizations like the Health Coverage Foundation like?  Does anyone know?  And you are so tragically right, Duane, about psych. drugs.

NAMI has and will continue to be our nations voice on mental health issues
It takes a team,  time and countless grass roots community leaders to see the real strength of NAMI
Getting our message to the world requires funding
Education and advocacy are NAMI s true mission
Pharmas should give back to the community
So education and advocacy takes place rather than providing perks for the medical establishment.

NAMI markets real and imaginary psychological disease and drugs used to treat real and imaginary diseases not unlike the way POZ markets HIV and HIV drugs.

If NAMI and POZ reported that SSRIs were highly addictive psychotropic drugs that cause depression, suicidal- and homicidal-ideation (Google “SSRI Stories”) chances are that companies like Pfizer, Sunovion, Takeda, Novartis, Forest Laboratories and Magellan Health Services would not support them financially.

The majority of these so-called “grass-roots” advocacy/activist groups are nothing more than pharmaceutical shills.

Clark Baker, I agree and disagree with you. I agree, of course, that these groups are pharma shills, as are lots of other people, but I do not agree that the aforementioned pharmaceuticals would not support the drugs that cause suicidal & homicidal ideation, depression, etc. 

They already do.  Big time.

And there’s no room here to list the new diseases, invented since the ‘50’s for which there are thousands of drugs designed to treat those diseases.

Betsy - I probably could’ve posted a clearer message… but there is no disagreement.

NAMI markets drugs that cause depression, suicidal- and homicidal ideation - along with other drugs that the AMA reports injure or kill more than a million Americans every year.  If NAMI was the “grass-roots” organization it purports itself to be, they would report these documented facts to protect Americans.  But since NAMI relies on financial support from drug companies and hospitals that profit from adverse drug reactions, NAMI remain silent about these serious side effects and ADVOCATES the distribution of highly addictive psychotropic poisons.

Thanks for the clarification, Clark.  We DO agree totally.

b/