Sunday, April 3, 2016

Urgent! Your signatures Needed for my Open Letter to Valeant Pharmaceuticals to Immediately Slash Their Unethical Drug Prices

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Please sign my petition to ratchet down Valeant's drug prices!
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My New open letter to Valeant's Board. If you agree, please reply by saying Yes, that I can put your full name, city and state at the bottom of my letter to Valeant. Thank you.  Please read below. Leonore 
Leonore Gordon, LCSW
130 8th Avenue #3A
Brooklyn, NY 11215
(718) 783 1986
(347) 489 9123
 Urgent Plea from a Patient (One of Thousands) to the Board of Valeant Pharmaceutical as They Ditch and Reconfigure Previous Drug Pricing Policies

Dear Board Chairman Ingram and Board Members;
 First, I thank you deeply for removing your now-outgoing CEO, Mr. Michael Pearson and your CFO, Mr. Schiller, the latter for “improper conduct.”
My hope is that their departure means that your new management will very quickly bring down the current prices of your present drugs. I read in a recent article, that in 2014 and 2015, according to RX Savings Solutions,  you raised the prices on 147 of your drugs, an average of 76% , nearly 33% higher than comparable generics
Members of Valeant's Board, those above-mentioned "business" decisions affect human beings instantly.  We flesh-and blood patient/consumers really need those 147 drugs TODAY! I am only one of thousands of sick people who can no longer afford to take these 147 medications which our doctors have prescribed to heal, or, at minimum, to improve our health, and thus the quality of our lives.  

 I’m a 60-year old woman on Medicare disability, living with 16 years of Parkinson’s Disease, and like countless Americans,  because of these price hikes, I need, but cannot afford the 2016 prices of your drugs. 
In my case, one of those drugs is Tasmar, of which you also own its generic, Tolcapone. The other is Xyfaxan, made by Salix, a company you bought last year, and it has no generic alternative. 
My RX plan, AARP United Health, requires me to pay an incomprehensible $2,960.00 out of pocket each year before they begin to help to pay for my medications, and thus my Rite Aid pharmacist informed me in January that I’d have to pay a jaw-dropping $2259. for my first 45 pills of Tasmar, or an equally unaffordable $1800. for its generic, Tolcapone, (which, as it turned out, because of your price hikes), United Health now recommends I take, instead. Without this drug, my Levodopa meds usually don't kick in and I thus can't move. 

In late March, I developed a GI problem, which disabled the effectiveness of my Parkinson’s meds, as infections often do. To correct this, my doctor prescribed Xyfaxan, yet another Valeant drug. Its cost to me? For a month’s supply (60 pills): $650.00 at Rite Aid, and 604.00 at Walgreen’s. Again, where am I, or anyone, supposed to find an extra $600.00 in my budget? My GP told me that Xyfaxan saved the life of one of his Medicaid patients and, knowing I couldn't afford $604. and angered by your prices, he found me free samples. Are there enough for the whole country? Why not drop the price to an affordable one?
How can your company possibly justify these exorbitant prices? Are these drugs made on Mars? And if we patients/consumers can’t afford these prices for a one-month supply, what happens for the rest of the year? 
I find it difficult to picture ANYONE, even members of your board, who, when confronted with such prices, would not be equally incredulous and horrified.

It is equally troubling to me that my United Health RX plan agrees to pay Valeant $2,292.00 for a month’s supply of Xyfaxan. (annual cost is $27,000.)and  $3,751.00 for a ONE month’s supply of Tasmar's generic, Tolcapone. (Multiplied  by 12, that's a staggering annual cost of $45,012). 
No wonder that as each year begins, United Health requires that we members spend nearly $3,000.00 before they begin to help us!  Your jacked-up prices have increased the cost of everyone's health care, and have made my monthly premiums irrelevant..

Are there temporary fixes? Your staff tells customers who call that Valeant has a Patients Assistance Plan, but when mine arrived in the mail, to my disappointment, I was excluded.  On page two of your application form, at the bottom, it says that your company excludes anyone receiving Medicare Part D; that meant me. Your PA plan also excludes anyone on HMO plans, and those receiving Veteran’s benefits. What kind of joke is that?
Next, people suggested asking my doctor for free samples. None for Tasmar or Tolcapone.  Independent plans like Patient Assistance Network? None can pay 1800. for my Tolcapone, either! Nor should they have to! You need to reverse those price increases! 

In the meantime, the tragic solution for me, (and I suspect for innumerable others) is that I’ve begun preparing to do without the most expensive medicines I need, however much my health may deteriorate as a consequence. For now, (with my doctor's okay) I’m using a pill splitter to break my remaining Tasmar into tiny pieces. But on a larger scale, what will be the long-term price our country’s economy will pay as thousands of North Americans sacrifice our health in order to pay our monthly rent and food bills?  It seems pretty clear to me; as we get sicker, we'll require way higher and more costly levels of care, heavily burdening our nation’s economy.

As Valeant stocks crashed in February and March, its top management told Congress, shareholders and investors (& the media)  that it will purportedly no longer buy up small pharmaceutical companies, drop their R&D components and then cynically jack up its drugs prices based on its desired revenue for the coming year. This was a policy revealed by memos subpoenaed and exposed by a Congressional Committee. ( 

Fortunately for the public, all of these antics got your company in trouble with Congress, and with several Special Prosecutors.
Last week, I heard that on April 27th, the Senate Committee on Aging has issued a subpoena to  deposed  Valeant CEO, Michael Pearson, to testify in a public hearing on April 27th.

I watched and listened (on my computer) with great interest to the February hearings as the Congressional Committee on Accountability questioned Valeant CFO Schiller re. Valeant’s price-hiking policies. I found these hearings at this link:
Of particular interest, was Schiller's response to being challenged by a committee member that even the NIH could not afford to do clinical trials with one of your drugs. His response  was quick; "I'll take care of that right away." My immediate reaction was that if public opinion was that important to your company, perhaps you could be persuaded to just as speedily lower the prices of  all 147 unreasonably priced medications if word got out that you were open for negotiation. 

Thus, my next request may seem na├»ve and absurd, but think, perhaps, of the long-them PR for your presently disgraced company: Please take immediate action to review and slash the prices of all of your medications to prices the average working North American can afford. Next, make a public announcement that you are doing so.  As you rethink your purpose and mission, you can reassure the public that we can stop worrying daily about how to pay for our needed Valeant drugs, choosing between buying food, paying for heat, or whether not we and our children can use your medications.  In doing so, you can also repair your shattered reputation, and lead the pharmaceutical industry away from greed and profit-motive,  becoming instead a standard-bearer for a new generation of pharmaceutical companies who will view their mission as researching and developing new medicines, and ultimately filling the unmet health needs of their customers. If you feel the pride in making drugs to save or improve lives, I imagine that you as a company would obviously then want to make them possible for the public to afford! 
Doesn’t that make sense? Thank you. 

Sincerely, and in urgency,
Leonore Gordon, LCSW
Note: Letter above is being cc’ed to members of Congress, AARP, Wall Street Journal, The New York Times, NPR, and several other media outlets.

(This letter is written on behalf of the following members of my Parkinson’s & friends community)
 Myra Kooy; Bklyn, NY
Cynthia Gilbertson; Bklyn., NY  
Ruth Bromberg; NYC, NY 
Jill Ritter; NY 
Jean Burns; Sun Lakes, Arizona 
Ellen Holzman; Roslyn Hts., NY 
Gary Grafaloff; Marlboro, NJ 
Karen Raphael; Brooklyn, NY
Linda Herman; Amherst, NY
Larry Weiss MD, San Francisco, CA  
EMAN Thabteh; Brooklyn, NY
Gys Kooy; Mahwah, NJ
Jeannette Bos; Carlstadt, NJ
Pamela Quinn; Nyc, NY
Leslie Ann Kilpatrick; Brooklyn, NY
Peggy Willocks; Johnson City, Tennessee
Karen Scheyer; Brooklyn, NY
Miriam Gordon, Medford, Mass. 
Dava Weinstein; NYC, NY
Dorothy Calvani, NYC, NY
Bruce Diamond; NYC, NY
Eilene Evans; Brooklyn, NY
Sara Schwab; NY
Judith Dean; Brooklyn, NY
Aaron Cohen; Brooklyn, NY
John Iozzio; Brooklyn, NY
Judith Ross; Brooklyn, NY
James Ross;Brooklyn,NY
Jane Levine; NYC, NY
Edward Ryder, Greenlawn, NY
Rebecca States; Queens, NY
John Iozzio; Brooklyn, NY
Helen Jacobs; NYC, NY
Miriam Gordon; Medford, Mass
Pat Bard; Brooklyn, NY
Roger Bard, Brooklyn NY
Ron Bromberg; NY, NY
Lea Frischer; NYC, NY
Maryanne Rudin, Brooklyn, NY
Helen Salinger, NYC, NY
Jennifer Ire, Brooklyn, NY
Laurence Levine, NYC, NY
Elyse Mendel; Brooklyn, NY
Ejun Dean; Brooklyn, NY 11215
Yunah Hong; Brooklyn, NY 11215
Sukyung Hong; Brooklyn, NY 11215
Tom Dean; Brooklyn, NY
Randi Korn; Alexandria, Va.
Paul Basista; Brooklyn; NY
Rebecca States, Queens, NY
Rasha Thabteh, Brooklyn, NY
Ruth Becker; Richmond, Me.
Joanna Foster; Queens, NY
Debbie Cyrus; Brooklyn, NY
Joy Esterberg; NYC, NY
David Leventhal; Brooklyn, NY
Bill Miller, Brooklyn, NY 
Susan PLath; Hartsdale,NY
Karen Burkhardt: Brooklyn, NY
Les Mills; Brooklyn, NY
Kristin Kramer, Brooklyn, NY
Erwin Kooy; Mahwah, NJ
Willie Wallendale, Flemington, NJ
Wayne Williams; Brooklyn, NY
Susan and Michael Kartzmer; W.Nyack, NY
Yitzhak Buxbaum; Brooklyn, NY
Ruth Scheinfeld; Brooklyn, NY
Ruth Becker; Richmond, Maine
Karen Burkhardt; Brooklyn, NY
Melanie Kartzmer; Denver, Co. 
Joanne Sampson; S. .Norwalk, Ct. 
Sandra Abramson; Bklyn. NY
Janice Wang; San Luis Obispo, CA
Nancy Dreyer; Belmont, MA
Susan Davis Pereira; NYC, NY
Robert Yuen; Brooklyn, NY

Most recent articles re Valeant: