This "Mother of Asthmatics" is telling Congress and the media that any patient complaints about HFA inhalers are due to either a) poor inhaler technique by patients, b) uncontrolled underlying disease before HFA inhalers were used- certainly not due to HFA inhalers themselves, and/or c) the 'fact' (she stated this as a patient representative of the FDA PADAC- Pulmonary Allergy Drug Advisory Committee) that asthma patients are "quirky".
She stresses that the HFA inhalers themselves are just as safe and effective as CFC inhalers in her frequent interviews with the media (and meetings with politicians), and she is fighting against and sabotaging our effort to legalize CFC inhalers in every way possible.
She has actually stated in an FDA Advisory Committee meeting that she has never found or heard of any patients who say they like Primatene Mist (an over-the-counter CFC epinephrine inhaler sold for fifty years, preferred by many thousands of patients) or that it has saved their lives.
In fact, she voted in favor of BANNING Primatene Mist (in an extremely close vote) in her capacity as an FDA-selected Patient Representative on the FDA PADAC in 2006. (See the New York Times story about this towards the bottom of this page).
She has accused our campaign of lying about the dangers and lack of efficacy of HFA inhalers for many patients.
She has accused our campaign of falsifying patient "testimonials".
And she has even had the audacity to publicly state that "Children are not having difficulties (with HFA inhalers). Parents are not reporting difficulties on behalf of their children." interview on 3/20/2008 (bottom of page 4)
In other words, there is nothing that this lying sociopath will not say in her efforts to make sure that our all-volunteer campaign to legalize CFC MDIs FAILS.
As long as safe, effective CFC inhalers are kept off the market, this asthma 'patient educator' will continue to receive massive amounts of drug company money each and every year (apparently, over $1,000,000 per year) in order to 'teach' patients how to use their HFA inhalers 'properly'.
But that's still not enough for this shameless, greedy, drug company puppet, so now she is even asking Congress for YOUR TAXPAYER DOLLARS to fund her 'patient education' racket, rather than asking Congress to SIMPLY LEGALIZE CFC INHALERS!
Does Nancy Sander, president and founder of The Allergy and Asthma Network Mothers of Asthmatics (AANMA) sound like a legitimate asthma patient advocate to you?
Do you think this "Mother of Asthmatics" actually gives a damn whether you, your son, or your daughter, suffer greatly for lack of a safe, reliable CFC inhaler?
As YOUR FDA-selected 'Patient Representative' on PADAC since 1996, during which time she pressured the FDA to SPEED UP the ban of CFC inhalers, (even though HFA inhalers never underwent large-scale, real world U.S. postmarketing studies) YOU HAVE EVERY RIGHT TO CALL NANCY SANDER AND DEMAND THAT SHE SUPPORT THE LEGALIZATION OF CFC INHALERS.
YOU HAVE EVERY RIGHT TO DEMAND THAT SHE FIGHT ON BEHALF OF THE ASTHMA PATIENTS SHE SAYS SHE REPRESENTS, RATHER THAN FIGHTING AGAINST THEM BY TRYING TO DEFEAT OUR CAMPAIGN TO LEGALIZE CFC INHALERS.
HER PHONE NUMBER IS 800-878-4403.
SHE IS YOUR FDA PATIENT REPRESENTATIVE (AT LEAST SHE WAS SINCE 1996). YOU HAVE EVERY RIGHT TO TELL HER WHAT YOU THINK ABOUT HER ACTIONS ON BEHALF OF ASTHMA PATIENTS.
PATIENT FRONT GROUPS are primarily financed by, and therefore primarily loyal to, drug companies, yet they hold themselves out as 'patient advocate' organizations.
The three major asthma patient front groups have all done some good work on behalf of asthma patients in the past.
However, their active participation in promoting the ban of CFC asthma inhalers in the name of 'environmentalism' (when we know that CFC inhaler emissions do not harm the environment in any way, and are certainly not responsible for the increased rate of skin cancer over the last few decades) clearly proves that patient health and safety was never their primary concern.
The fact that they would not only support the medically and scientifically unjustifiable ban of CFC inhalers, but do so despite the fact that the replacement HFA inhalers never underwent large-scale, multi-year, real world U.S. postmarketing studies, proves that they are perfectly willing to betray the patients they say they 'advocate' for in exchange for massive amounts of drug company money.
Nancy Sander's nonprofit organization 'AANMA' (Allergy and Asthma Network Mothers of Asthmatics) stands out as the most dishonest and malicious of the three asthma Patient Front Groups.
While thousands of patients are contacting their political representatives, explaining the serious medical problems that they are having with HFA inhalers, and asking Congress to legalize CFC inhalers so that they can once again breathe well, Nancy Sander (AANMA) is undercutting them and sabotaging their efforts by telling Congress and the media that these patients are not using their inhalers properly (even the MDs and RNs among them!), or that their underlying disease must have been uncontrolled, because she knows for a fact that HFA inhalers are just as safe and effective as CFC inhalers for all 40 million patients who use them!
If Congress amends the Clean Air Act in order to permanently legalize CFC inhalers, Nancy's drug company-sponsored HFA inhaler 'patient and physician education' gravy train would be permanently derailed. This is why she does not want CFC inhalers to be legalized by Congress.
Patient Front Groups like AANMA are extremely well paid for their lies and disinformation on behalf of their drug company clients.
We understand that AANMA claims to have approximately 5,000 patient members who pay $35 annually, which generates about $175,000 in revenue. Yet they claim to have $1,000,000 to $10,000,000 in annual income, according to Alexa.com. Clearly, most of their money comes NOT from the asthma patients they claim to represent, but from other sources, most notably, the HFA asthma inhaler drug companies.
What do the drug companies get for that level of financial support?
They get AANMA's founder and president to spread outrageous lies to Congress and the media, such as this gem, which bears repeating:
"Children are not having difficulties (with HFA inhalers). Parents are not reporting difficulties on behalf of their children."
-Nancy Sander, interview on 3/20/2008 (bottom of page 4)
Skim through the Doctor's Speak Out page, the Patients Speak Out page, the More Patients Speak Out page, the Foreign Patients page, ConsumerAffairs.org's Reader's Comments pages, our Guestbook comments, and thousands of comments on our original petition.and then ask yourself one question about this "Mother of Asthmatics", this Paragon of Virtue:
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"Internet Warning for Patients Who Use Metered Dose Inhalers"
On AANMA's website, under the above titled headline, our campaign to legalize CFC inhalers is accused of several serious offenses.
We are accused of 'defrauding the public' (we have no idea what this means, but it sounds bad), 'frightening patients', 'distorting facts', 'harassment of patient education organizations', 'slander', and 'making false accusations'.
There are no examples offered to support any of these assertions, because they are all lies.
In addition, AANMA accuses this campaign of the "falsification of patient 'testimonials'".
We feel especially compelled to refute this obnoxious lie.
We have never falsified a patient (or any other) 'testimonial' (we think she means 'comment'). Not one. Not ever. There is no need to do so. We have thousands of patient comments. We can't post them all.
We are confident that the public will continue to see through the desperate, pathetic lies peddled by AANMA and its president and founder, Nancy Sander.
And we are confident that the public understands that AANMA's lies say much more about the drug company puppets who run that smarmy patient front group than they do about our ad hoc, all-volunteer campaign to legalize safer, more effective, more reliable CFC asthma inhalers.
If you come across any other smear attacks against our campaign to legalize CFC inhalers, we would greatly appreciate it if you would email the information to us at sponsor@SaveCFCinhalers.org.
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U.S. News & World Report published the following on August 24, 2007:
"Two big patient advocacy groups, the American Lung Association and Allergy and Asthma Network Mothers of Asthmatics (AANMA), support the FDA decision (TO BAN CFC MDIs)—and in fact helped spur it by filing a 2003 petition requesting CFC withdrawal.
"Both groups undertook CFC public awareness programs sponsored by drug companies. The ALA's "Time to Make the Switch" campaign was underwritten with $1 million from Teva, maker of ProAir HFA. The AANMA promotes "Smart Moves to an HFA Inhaler", sponsored by Sepracor. That company sells the albuterol-like drug levalbuterol as Xopenex HFA.
"The fact we all have to face is that the CFC inhalers are going away," says Nancy Sander, AANMA's president and founder, who has owned Sepracor stock."
Nancy has said in the past that her investment advisor picked Sepracor for her, and so therefore she did nothing wrong, but stupidity isn't a defense against such gross conflicts-of-interest for principals of a 501c3, is it?
Let's be clear. We are talking about the founder and president of a non-profit organization (501c3) which holds itself out as an advocate for asthma patients- which is the only reason it GETS non-profit status (which allows all donations to her organization to be tax-deductible for the donor).
This woman's 'non-profit organization' (AANMA) then accepts massive amounts of money from one or more HFA ASTHMA INHALER DRUG COMPANIES over a period of many years (including Sepracor) while claiming to SPEAK and ACT (and VOTE in FDA Pulmonary Allergy Drug Advisory Committee meetings as an FDA-selected 'Patient Representative', no less) on behalf of asthma patients!
This sounds like a TREMENDOUS conflict-of-interest to us. The kind of conflict that SHOULD cause AANMA to lose its non-profit status. Yesterday.
But accepting massive amounts of money from drug companies while claiming to represent patients is not enough for Nancy. She then plays dumb when her investment advisor decides that she should invest tens of thousands of dollars in SEPRACOR STOCK.
We're quite certain that it never dawned on Nancy that Sepracor would eventually be one of a few companies which would stand to profit greatly as the manufacturer of an HFA rescue inhaler (the U.S. market ALONE has 40 million patients who need MDIs) once the CFC inhalers were banned- thanks largely to HER efforts.
The fact that many thousands of patients (including CHILDREN) are getting very sick, and in some cases, dying, from HFA inhalers is of little concern to this "Mother of Asthmatics".
If she truly cared about patient safety, she would have insisted that large scale, 'real world' U.S. postmarketing studies of the replacement HFA MDIs be done before she pressured the FDA to speed up the ban of CFC asthma inhalers, to please her drug company clients in IPAC (The International Pharmaceutical Aerosol Consortium- the HFA inhaler manufacturers' research/political arm).
This is AANMA's letter to the FDA on October 28, 2003 asking them to speed up the ban of CFC albuterol!
The letter's stated concern about the uncertain availability of CFC-11,12 propellant is just another AANMA lie.
Here is a letter from Honeywell to the FDA on April 20, 2004 assuring the FDA that Honeywell was ready, willing and able to produce all the CFC-11,12 propellant the U.S. needed, out of its Baton Rouge, Louisiana plant.
But even drug company money is not enough for Nancy.
Now, she is asking Congress for TAXPAYER DOLLARS to fund MORE 'patient and physician education' on HFA MDIs instead of asking Congress to bring back CFC inhalers as thousands of patients are demanding!
CFC inhalers never required years of gold-plated 'patient education'. They simply worked.
All the patient education in the world will never work for HFA inhalers because it is the INACTIVE INGREDIENTS and UNIQUE IMPURITIES in them that are harming so many thousands of patients.
But Nancy has built a cottage industry out of the HFA asthma inhaler 'patient education' racket and she's not done milking it yet. This is her primary motivation- not the pain and suffering of very vulnerable, very sick patients (including children) who can't tolerate HFA asthma inhalers. That's some "Mother".
Now let's look at the quality of the 'patient and physician education' this drug company puppet has been delivering for the last thirteen years. On another one of her drug company-financed jihads, Nancy shared the following pearls of wisdom (March 27, 2007, see her letter at the bottom of the page):
"... labeling was either nonexistent or incorrect or applied to the vial in such a way that ink and adhesive chemicals would pass through the vial into the mixture. We found ethanol and benzalkonium chloride, chemicals that cannot be used in FDA-approved products,... "
She's worried about the ink and adhesive chemicals on the label of a compounded drug (which is applied topically) passing through the vial into the mixture.
But she has no worries at all about the dozens of inactive ingredients and impurities that asthma and pulmonary patients are inhaling into their lungs from the poorly tested HFA inhalers that she insists are just as safe and effective as CFC inhalers, despite thousands of patient complaints of serious adverse reactions!
She's worried about the ethanol in some compounded products; she informs us that ethanol can't be used in FDA-approved products.
Someone needs to tell this brilliant 'patient and physician asthma educator' that three of the four FDA-approved HFA rescue inhalers include ethanol which is inhaled into the lungs of asthma and pulmonary patients who may be on the verge of an asthma attack- and this ethanol in HFA ASTHMA INHALERS is in amounts that are proven to cause BRONCHOCONSTRICTION in some patients!
This may explain the large number of patient complaints that the HFA 'rescue' inhalers are making their asthma symptoms worse! (CFC rescue (albuterol) inhalers used no ethanol.)
AANMA is a textbook example of a patient front group, financed heavily by drug companies while posing as a patient advocate.
It has abused its non-profit status for years, and it's time to end this farce once and for all and revoke AANMA's 501c3 tax-exempt status immediately.
And for all of you thousands of Primatene Mist (CFC epinephrine) fans who say that it gives you the best relief of your asthma symptoms of any bronchodilator, why not call Nancy at 1-800-878-4403 to thank her personally for voting (as your FDA-selected patient representative!) to BAN Primatene Mist in a very close vote of the January 24 2006 FDA Advisory Committee meeting, where she actually said:
"... just surfing the Internet, just looking for what patients say about Primatene Mist. You are not finding anyone who is saying that this has saved their life, it is what they need, it is what they want." (p.188-9)
Of course no one wants Primatene Mist, Nancy.
That's why it's been on the market for fifty years.
We have received dozens of emails from furious patients who say that they've tried other bronchodilators (including albuterol), and Primatene Mist (CFC epinephrine) works BEST for THEM. But as usual, "Mother of Asthmatics" Nancy Sander knows best.
And here's a little more information for you, Nancy, about how Primatene Mist has 'never saved anyone's life', from a New York Times article published four months after you voted to ban Primatene Mist:
"The situation looked dire. While Jay Kraeszig of Zionsville, Ind., was on vacation in Florida a few years ago, he had a severe asthma attack and realized he had left his albuterol inhaler in his hotel room. "He was turning gray," his wife, Mary D. Kraeszig, recalled in an interview. "Probably another couple of minutes and he wouldn't have been conscious."
"Fortunately, she said, there was a Wal-Mart nearby. She dashed in and bought Primatene Mist, an asthma inhaler available without a prescription. It relieved the attack in minutes.
"But people like Ms. Kraeszig say that Primatene, the only over-the-counter method of quelling an asthma attack, is a vital stopgap for people caught without their prescription albuterol inhalers. And some advocates for minority groups and the poor say that Primatene is often the only remedy available to those who do not see doctors and cannot afford or otherwise obtain prescription drugs.
"These inhalers are all that, in many cases, stand between them, as an asthmatic, and the emergency room or worse," Manuel Mirabal, president of the National Puerto Rican Coalition, testified at the January F.D.A. meeting.
Other committee members countered that even though Primatene was not ideal, it should remain available. "I think it's naïve on our part to think that if this medication went away that these people would access appropriate care," Dr. Mary E. Tinetti of Yale said.
"Ms. Kraeszig, a veterinarian, has already commented. After seeing a news report about the committee's decision, she sent an e-mail message to the F.D.A. telling how her husband's life was saved by the over-the-counter product.
"If you ban Primatene Mist without another available O.T.C. substitute," she wrote, "people will undoubtedly die."
And Dr. Kraeszig is right, Nancy.
Thanks in part to your vote to ban inexpensive, over-the-counter Primatene Mist, people will die.
If you've had your fill of this greedy, back-stabbing, lying, phony 'asthma patient advocate' (who knows better than you do which drug works best to relieve your asthma symptoms: CFC inhalers or HFA inhalers, albuterol or epinephrine), telling Congress and the media that HFA asthma inhalers are just as safe and effective as CFC inhalers, that the problem is simply that you are not cleaning or using the HFA inhaler properly, or that you have allowed your asthma to get out of control (as opposed to having the HFA inhaler cause your asthma to get out of control), we suggest that you call Nancy Sander directly at 1-800-878-4403 and share your thoughts, feelings and concerns directly with this "Mother of Asthmatics".
Nancy is very proud of the fact that AANMA was a recent recipient of the EPA's 'Ozone Layer Protection Award' for helping to spread THE BIG LIE over the last thirteen years that CFC inhaler emissions threaten the ozone layer, increase UV-B ground radiation, and increase skin cancer rates.
We think that's nice, but we don't think it does Nancy justice. So in her honor, we've created a new award.
The management of The National Campaign to Save CFC Asthma Inhalers is pleased to announce that AANMA Founder and President Nancy Sander has been selected as the first recipient of our annual Nancy Sander Asthma Kiss of Death Award, in recognition of all the pain, suffering and death she has been, and will continue to be responsible for, by fighting hard to ban safe, effective, reliable CFC asthma inhalers and replace them with more dangerous, less effective, poorly tested HFA inhalers.
Because when drug company money talks, Nancy 'Mother of Asthmatics' Sander listens.
