PDNY: New York City Resources and Information Service for People with Parkinsons Disease: Please join National MS Society in Patient Initiative re Drug Prices

PDNY: New York City Resources and Information Service for People with Parkinsons Disease: Please join National MS Society in Patient Initiative re Drug Prices

Dance for PD Free Dance for PD classes in All Nyc boroughs (and world)
Blogger: Leonore Gordon, LCSW

Brooklyn Parkinsons Group brooklynparkinsonsgroup.orgBrooklynparkinsongroup- Free exercise and dance classes, programs and support groups

Please join National MS Society in Patient Initiative re Drug Prices

Really important NY Times article: http://mobile.nytimes.com/2016/09/28/business/furor-over-drug-prices-puts-patient-advocacy-groups-in-bind.html?smid=fb-share&referer=http://m.facebook.com
PD patient advocacy groups! Feel free to substitute PD for MS in your own version addressed to elected officials, https://www.usa.gov/elected-officials https://www.usa.gov/elected-officials
But don't let the MS folks stand alone.

Parkinsons Advocates Report Apathy Symptoms Alleviated Through Contributing to Community

https://www.dropbox.com/s/79rwvwqoivctmm7/Poster%20ApathyPARKINSONS%20CONFERENCE%20%20WPC%20poster%209%2012%2016.pdf?dl=0

Key Findings & Conclusions/Implications and Future Goals as per Survey Results 

(54 respondents from ten countries, 8 from outside North America)

  

A) 76% of those surveyed experience Apathy symptoms as described in survey intro,    43% for a day or more

B) Only 33% of respondents report being clearly asked by their Movement Disorder neuro's if they've personally experienced Apathy symptoms, and only 21% of those surveyed had Apathy clearly explained to them as a PD symptom. A good number mistake Apathy for Depression. 

C) 83% of those surveyed felt Apathy had reduced their motivation to participate in physical, social and other activities which could benefit them 

D) 81% of those surveyed felt advocacy and volunteering  endeavors reduce their apathy symptoms, with 68% saying this was for a week or more, 

E) If offered, 92% would seize opportunities to help others in PD or other local communities, even from their homes. 

My conclusions (& Implications) from survey results 

1) Members of PD community need to better educate PD peers, our families, and our PD neuro's about differentiating Apathy from Depression, and to recognize and identify symptoms unique to PD-related Apathy . 

2) We need to teach our neuro's and other health care providers the importance of inquiring from their PWP patients whether they have Apathy symptoms

3) Recommend to PD organizations and Health Care practitioners that they explore the willingness of patients to contribute to their self-defined communities-including working from home- and emphasize the treatment value of this work as alleviating Apathy.  Next. Introduce idea to above groups of encouraging and/or recruiting PWPs with skills suited for needed positions benefitting the PD (or local and/or global community). 

4) Encourage family members in PWP's support systems to do the same as suggested above; to find ways the PWP can help others, including activities done from home such as joining MJ Fox/PAN to e-mail legislative alerts, sending get-well cards or making phone calls to sick members of local community, enlisting friends and family to join Unity Walks for PD and other disease group fundraising,  etc. 

%20WPC%20poster%209%2012%2016.pdf?dl=0

Learn About SIBO: Attention PD Community! GI Symptoms in PD Which Your Parkinsons Doctor May Not Be Able to Explain

Attention Pd Community! Learn About SIBO: GI Symptoms in PD Which Your Parkinsons Doctor May Not Be Able to Explain

By Leonore Gordon, LCSW


If you have Parkinsons and have had inexplicable weight loss, abdominal pain, are frequently bloated, gassy, feel full after eating very little food, and have IBS or Gastric Reflux symptoms, constipation or diarrhea, all along with a recent dramatic reduction in the effectiveness of your PD meds, and if all of your medical tests have shown nothing your doctors can clearly point to, please look up "Parkinson's and SIBO" (Small Intestine Bacterial Overgrowth), and "Parkinson's and Gastroparesis." Here's one useful link, and there are other links below.  https://www.ncbi.nlm.nih.gov/m/pubmed/24637123/?i=4&from=sibo%20parkinsons

Basically, as our PD progresses, our GI systems (along with other systems) slow down, and infections easily hang out as food moves sluggishly through our bodies, inviting bacteria formation. All of these SIBO symptoms can follow a GI infection.  A web site of a St. Louis GI practice GIDOCTOR.NET  has an informative SIBO CENTER section, but not the PD connection. Check out GIdoctor.net, and SIBO Center, then Research, to better understand SIBO. 

Please read below info., and share the following with your Movement Disorder Doctor, and with your GI (if you have one). 

The good news is that there are treatments which can get you back to normal mobility. First line of defense is a GI specific antibiotic called Xyfaxan, or Rifaximin (generic). 

Unfortunately, both drugs are expensive, made by Valeant Pharmaceutical, a incorrigibly greedy big Pharm excoriated by committees in both houses of Congress in the past year for its predatory price-fixing. Some Part D and Medicaid plans do cover it, and you can also ask your doctor if they can get you free samples if you have problems finding either Xyfaxan or Rifaximin. 

If you think you may have SIBO, find a PD-educated GI who's willing to learn from you. You can be diagnosed through a special Hydrogen breath test, but that can be expensive. What has also helped me is Endozin (a digestive enzyme you can order from Amazon).  

Once you have SIBO, it's tough to solve fully without changing your diet dramatically, and switching to foods all of our stomachs digest easily, called "Low FODMAP" foods. (See more below) Giving up foods you love can be really hard, but you do feel better in the long run.  

 The Research community has done very little research on SIBO and PD but some does exist. Here are a few scholarly citations. 

2013https://www.ncbi.nlm.nih.gov/m/pubmed/23712625/?i=3&from=parkinson%27s%20rifaximin
2014 https://www.ncbi.nlm.nih.gov/m/pubmed/24992085/?i=2&from=/23712625/related

Treating SIBO Through Diet

Google LOWFODMAP diets, and start cutting out foods with high FODMAPs (fermentable short chain carbohydrates). It's hard, but often the best solution.   Look for a nutritionist who understands SIBO, as well as PD issues. Many of us taking Levadopa need to avoid animal protein and iron near our dosage times, as protein and iron compete with dopamine for absorption in our systems, and dopamine usually loses the competition,thus  interfering with our PD meds and our mobility.  Avoiding both High Fodmap foods and protein when we eat can be a real challenge if we're trying to maintain a heathy weight.

WebMD article recently posted a useful article about gas-producing foods which a list which somewhat  overlapped the High FODMAP food list:

http://www.webmd.com/digestive-disorders/ss/slideshow-surprise-gas-causes?ecd=wnl_spr_061516&ctr=wnl-spr-061516_nsl-ld-stry_1&mb=0Azx0Hzf0zWURgNTb3GEMOHnVev1imbC9jNcepJLjWI%3d

Personal Note:

For me, what has specifically helped SIBO symptoms, along with dietary changes, has been a variety of western and complementary medicines. 

1) Xyfaxan 

2) the digestive enzymes, Endozin, which can be ordered from Amazon. (Description of its contents: "Zinc carnosine has been shown to provide the first line of defense in gut repair. By promoting healthy mucus secretion, exerting antioxidant properties, and defending messenger cells, Endozin puts the kibosh on digestive offenders and protects the stomach and small intestine from further injury."

My GI said this digestive enzyme was fine.

3) I'm also feeling better from use of a lesser known drug, LDN (low-dose Naltrexone)  at a tiny dose of 2-4 mg., used for years by GI doctors experienced in treating SIBO. Again, check out the highly reputable GI practice in St.Louis, GIdoctor.net, and their SIBO Center, then Research, to better understand SIBO, and look for LDN research. They've had success in treating SIBO with LDN. My GI was willing to prescribe this.

 You'll need a prescription of 50 mg. Naltrxone for a pharmacy to cover your prescription, which a "compounding pharmacy" will then break down for you. 

Bottom line, changing my diet, after huge rebellion, helped me the most.

*Many thanks to Dr. Karen Raphael,  my old friend and researcher who was diagnosed with PD about 12 years after me. Dr. Raphael, who also has SIBO, learned about it, found an excellent GI practice in NYC wth doctors who understand and treat SIBO, and shared what she'd learned with me.  We are both finally feeling better, primarily from diet change.

High and Low FODMAP Foods

In one trial,  researchers tested three different diets, controlled by handing out frozen meals to the 37 patients, all of whom had irritable bowel syndrome. The study was designed as a cross-over, so all patients got a week on each test diet (high gluten, low gluten or no gluten) with two weeks in between. The end of the study was a three-day repeat, where each patient got three days of gluten and another three days without. While there were some upset stomachs, no symptoms could be directly attributed to the gluten in the patients’ diets. Instead, the results suggested a placebo effect: If you think your stomach will be upset, you probably will have tummy trouble, no matter what diet you’re on.

Some might say that this study’s results mean that gluten sensitivity in general is “bogus.” But the study authors propose that something else entirely is to blame for gastrointestinal distress in IBS patients. Instead of gluten, look to fermentable short chain carbohydrates, called FODMAPs. These molecules are in wheat, barley and rye, as well as other foods including apples, cabbage and beans.

FODMAPs are always going to cause some trouble. They aren’t absorbed well in the small intestine, and when they hit the large intestine, they get fermented by bacteria. That fermentation process is what gives us bean farts and cabbage gas. But while the burrito bloat will happen to everyone, study coauthor Peter Gibson, a gastroenterologist at Monash University, hypothesizes that people with IBS are more sensitive to the gastrointestinal stretching produced by FODMAPs, resulting in more pain and symptoms. Since cutting out gluten also tends to cut out some FODMAPs, he says, people with IBS may well assume that gluten was the culprit.

In the new study, the test diet was also carefully designed to be low in FODMAPs. Gibson’s laboratory also reported in the Sept. 26 Gastroenterology that 30 IBS patients cut their gastrointestinal symptoms in half when they spent 21 days on a diet low in FODMAPs.

Gibson has written a book promoting a low FODMAP diet, but more research is needed before the next diet craze takes hold. Other studies have shown positive effects of gluten-free diets in IBS patients.  Some patients who self-identify as gluten-sensitive could well have other diagnoses that have not been ruled out, including FODMAP sensitivity, sensitivity to fructose or sensitivity to other proteins in wheat.

Maureen Leonard, a pediatric gastroenterologist at Massachusetts General Hospital in Boston, is particularly concerned that a gluten-free diet may not, in fact, be any lower in FODMAPs. “Many foods that are naturally gluten free such as fruits, vegetables and beans are quite high in FODMAPS,” she says. “In patients we see with true gluten sensitivity, gluten or wheat is the culprit causing the gastrointestinal distress.” She also has worries about the patient selection for the new study and the group’s earlier work. The patients were all self-selected as being sensitive to gluten. “Non-celiac gluten sensitivity can be defined as follows:  individuals without celiac disease whose symptoms improve on a gluten-free diet after ruling out other conditions,” Leonard says. Because the patients’ symptoms were not necessarily controlled on a gluten-free diet at the start of the study, “the subjects in these studies do not meet these criteria.”

Leonore Gordon, LCSW

130 8th Ave. #3A Bklyn. NY 11215 

Leonore1234@aol.com 

(718) 783-1986

Alphapdny.blogspot.com  

Parkinson's People: Please Take My Brief Survey About Advocacy and Volunteering as Alleviating PD Apathy

                               PLEASE TAKE MY SURVEY

DOES ADVOCACY & VOLUNTEERING ALLEVIATE PARKINSON'S APATHY?

Over 23 studies suggest that Apathy impacts 40% of those living with Parkinson's. It has been my observation as a clinical social worker with Parkinson's for seventeen years, that my own symptoms of Apathy are greatly reduced when I am proactively helping my community in some way, Multiple peers with PD have reported similar experiences, but as far as I know, there are no studies about this. Evidence has already shown that for those with PD, our quality of life and overall moods can reap significant benefits from exercise, dance, singing, involvement in the arts, and social connection.  

If you are unsure about whether or not you may have Apathy or Depression, (or neither), there are a number of overlaps between symptoms of Depression and Apathy, including fatigue, anhedonia (absence of joy), slowness, and insomnia, (and some are symptoms of Parkinson's!)  Depression, however, is a mood disorder with longer- lasting symptoms, and can include loss of self-worth, guilt, and suicidal thoughts. If you have any of these feelings, you should see your doctor for an accurate diagnosis.

Apathy is considered to be primarily a motivational disorder or syndrome, with symptoms which can fluctuate throughout the day. Some research suggests that Apathy seems to worsen as PD motor symptoms progress. Key symptoms of Apathy are decreased motivation to initiate new tasks; a flattening of emotional response (or indifference) to people & events which once evoked stronger emotional response; reduced curiosity and interest in learning new things; and a general loss of a "get up and go" spirit.

There are no formally recognized diagnostic tools for Apathy, but it is a recognized syndrome, and seemingly not alleviated by anti-depressant medications. Yet, when some with PD are engaged in Advocacy-type activities, such as educating others about Parkinson's, speaking with local or national political representatives about research funding, fundraising for a cure, or organizing visits or gifts for sick peers, those volunteers report that their Apathy symptoms seem to lift.

IF you have PD, please complete this survey to help me assess how widespread this "treatment" actually is. Thank you. Survey results will appear on a poster at the 2016 World Parkinsons Congress in Portland, Oregon. WPC2016.org                                               Leonore Gordon, LSCW;  leonore1223@aol.com; alphapdny@blogspot.com

Please take my survey

Join Us at World Parkinsons Congress in Portland, Oregon, from 9/.20-9/24 WWW.WorldPDCoalition.org

Join us in Portland, Oregon for the 4th World Parkinson Congress; September 20-23, 2016

More than 3,500 people from 65 countries will attend the WPC 2016 in Portland, OR to learn about cutting edge science, clinical research and comprehensive care from some of the most renowned health professionals, researchers, and advocates globally. Registration is open NOW!

Look for Travel Grants if necessary.

My Belief: Advocacy Alleviates Apathy Caused by Parkinsons: My Video Submission to World PD Congress 2016 Video Competition

Advocacy and Helping Others Can Be An Antidote to Apathy: My 3-Minute Video made with Myra Kooy

https://m.youtube.com/watch?feature=youtu.be&v=eOn-2O7OOig

My video is about realizing how advocacy and doing good for your community alleviates the crippling Apathy which often comes with the whole package of PD, and which depression meds don't help.

I was petrified to do it, but because this felt so vital to convey, I pushed past my self consciousness about PD symptoms of speaking too fast, too low, and too garbled when I get very excited to convey something important. 

 This all is all like a dyskinesia of your expressive speech mode, common but exasperating and embarrassing.  

So with my wife Myra as coach, I practiced speaking about what I needed to share into webcam on computer about three times to really assess myself. 

When I realized I didn't look so bad, but just couldn't slow down my speech, I decided to summarize bullet points on paper as I spoke, with my face hidden at points, as a kind of visual translation, with photographs. 

Enjoy! Leonore

My Articles: Shattering the Myth of "Wow! She's Gotten So Much Better!"

• Leonore Gordon, LCSW; (718) 783 1986; Leonore1234@aol.com Please do not duplicate without permission
  Shattering the Myth of "Wow! She's Gotten So Much Better!" with “Your Neighbor with Parkinson’s is Feeling Better For the Moment, Thank You, but Check Back in an Hour....”
  
  
         As a 58-year old female poet and retired family therapist, with 15-plus years of living with Parkinson’s under my belt, I aim to take on PDF’s challenge for Parkinson’s Awareness Month, ie. “Which myth about Parkinson’s would you most want to shatter?” As a Jewish therapist, I’ll answer a question with a question, and ask, “How many ‘selves’ really exist on a daily basis inside of your neighbor with early-onset, advanced Parkinson’s?” (This is not to imply that we who live with Parkinson’s are like “Sybil” with diagnosable pathology!)  
  
  
  I’m referring to the unpredictable and fluctuating states our Parkinson’s bodies morph in and out of throughout each day because of the imperfect medications most of us in later-stage PD need to take every 2-4 hours in order to get up out of a chair and walk. These are medications on which we are dependent to treat our disease until a cure is found, but their consistent and hourly effectiveness is far from a sure thing.
  

Please read and sign my MoveOn petition about Spiking Prescription Drug Pricing

 https://www.facebook.com/leonore.gordon/posts/10209291784800479

Are you bewildered and scared by the sudden spike in your prescription drug prices? There's an explanation, and it's not because research to create these drugs costs a lot. It has to do with a cynical set of investments over three years by a handful of big pharm. CEO's who bought small companies with excellent drugs they'd created, trashing the Research depts, and then feeling free in a regulation-free America to spike the prices of hundreds of drugs by ten, fifteen times.

 Please sign and share if you believe we must use every strategy imaginable to make our prescription meds affordable. Read below for brilliant idea attempted in a letter last month to the NIH and HHS written by members of the Progressive wing of the Democrats

https://www.statnews.com/pharmalot/2016/03/28/sanders-cancer-drug-prices/

Petition statement to be delivered to  Sylvia Burwell, Secretary of Health & Human Services, Francis Collins, Director of NIH, The United States House of Representatives, The United States Senate, and President Barack Obama

NIH Director Collins & HHS Secretary Burwell: Please Use the Authority Granted You By the 1980 Bayh-Dole Act to Override Drug Patents and Make America's Drugs Affordable Again!

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

Please sign my Change.org petition. Thank you!
Please sign my petition to ratchet down Valeant's drug prices!
Thank you for e-mailing your approval to sign your name to below petition. Please sign the Change.org one, also, as it will be more effective. Thanks!

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 8^th Avenue #3A

Brooklyn, NY 11215

Leonore1234@aol.com

(718) 783 1986

(347) 489 9123

                               

04/03/2016

 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.” http://www.nytimes.com/2016/03/22/business/valeant-ackman-pearson-earnings.html?smprod=nytcore-iphone&smid=nytcore-iphone-share

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. https://www.statnews.com/pharmalot/2016/03/29/valeant-lesson. 

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. (http://www.cbc.ca/beta/news/business/valeant-subpoenaed-in-u-s-for-drug-pricing-1.3272009). 

Fortunately for the public, all of these antics got your company in trouble with Congress, and with several Special Prosecutors. http://www.cbc.ca/news/business/drug-prices-shkreli-valeant-turing-1.3430639

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 27^th.  http://www.aging.senate.gov/press-releases/chairman-collins-ranking-member-mccaskill-announce-third-hearing-in-senate-aging-committees-bipartisan-investigation-

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: https://oversight.house.gov/hearing/developments-in-the-prescription-drug-market-

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 naïve 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:  

 https://www.statnews.com/pharmalot/2016/03/29/valeant-lessons

 http://www.newyorker.com/magazine/2016/04/04/inside-the-valeant-scandal

http://www.sanders.senate.gov/newsroom/press-releases/lawmakers-to-nih-and-hhs-act-now-on-drug-affordability 

http://www.wsj.com/articles/valeants-outgoing-ceo-to-testify-at-senate-hearing-on-drug-prices-1459193094

http://www.npr.org/sections/health-shots/2016/03/29/471867695/physician-group-calls-on-government-to-rein-in-drug-prices

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Open Letter to Valeant Pharmaceutical about Tasmar price hike: 2259.00 for 45 pills!

Leonore Gordon, LCSW

130 8^th Avenue #3A

Brooklyn, NY 11215

Leonore1234@aol.com

(718) 783 1986

(347) 489 9123

                                                                                                                                                                  3/14/2016

Re: a personal plea to Valeant Pharmaceutical

Dear CEO Pearson and members of Valeant’s Board of Directors;

First, I hope you are feeling better after your long bout with pneumonia, Mr. Pearson.

I am a 60-year woman with 16 years of Parkinson’s, receiving Social Security Disability, who cannot afford to pay for one of your products, Tasmar, which I very much need, as it really helps my other Parkinson’s meds to kick in. Because of Tasmar, I can walk, be independent, exercise, dance, lead my Parkinson’s support group, and participate in the other activities that help me get through the day. A few weeks ago, my Rite Aid pharmacist called me in consternation to ask if I knew the 2016 price for Tasmar? She went on to inform me that it would cost me $2,259.00 for a one-month supply of 45 pills. I was flabbergasted!!!!!

What kind of human being puts a price like that on any medicine? And with what justification?? Is it made on Mars? Who on earth can afford that?

Last year Tasmar cost an equally unaffordable $1800.00, (quite a price hike!) but I got lucky when a friend gave me a bottle of her Tasmar because she no longer could take it.

Nor can I afford Tasmar’s generic, Tolcapone, costing me $1800.00 for the same number of pills. Tolcapone is a product made by Oceanside Pharmaceutical, owned by Valeant. The price is the same for Par Pharmaceutical’s version of Tolcapone.  

Furthermore, Valeant’s purported Patient Assistance program for Tasmar excludes those of us who receive Medicare Part D, which I grimly read as I got to the bottom of page 2 of your application form. Do you really believe we in those excluded categories can afford 2259.00 for a bottle of pills?

Like so many in the US and Canada, I can’t take this medication I need because I can’t afford it. No one in my world has either $1800.00 or $1500.00 set aside for a needed vial of pills for one month. Perhaps that price feels reasonable to you and members of your board, but not in my world. When I researched Valeant on the Internet, seeking a Patient Assistance program, I stumbled on innumerable news reports that Valeant is actively under fire for its unethical, inhumane arbitrary price hikes from multiple arenas, including by the

Congressional committee on Accountability and Government Reform. I watched the Feb.4^th hearings online the other day, as the bi-partisan committee interviewed your temporary replacement, Mr. Schiller. I was intrigued to see him promise to make a quick phone call to the NIH after being told they couldn’t afford to include one of your heart medications, promising to correct that problem.

If Public Relations and “image” was important enough to your company that you dropped the prices of two of your heart drugs after being scolded by a Congressional Committee, why not do a huge turn-around and announce a Public Relations campaign to drop the prices on all of your pharmaceutical products so that people like me, my friends, and millions of others can afford the medicines we need? And I don’t mean a PR campaign like your already existing “Patient Assistance Program” which, as I referred to earlier, excludes people receiving Medicare Part D, veterans receiving Veterans’ Assistance, and others on HMO’s. In a news article, I read the memo written by Valeant marketing executive Jeff Strauss, referring to this Patient Assistance initiative, justifying your inhumane drug costs, by saying "These patients are not profitable for Valeant, therefore the price increases offset the costs associated with supporting this initiative... Kind of hard to paint us as greedy if we have removed financial barriers for patients." This does not look good to your investors, Congress,  or the public.

Last week, someone sent me a link to Hillary Clinton’s new tv ad targeting Valeant’s price-hiking as “predatory.” I know your stock value dropped dramatically since being investigated, and since Clinton’s commercial aired, but before you drop the Neurology unit of your company, or your pharmaceutical component, why not seriously go public with repentant new policies dropping all of your drug prices to humane ones your child’s teacher can afford, and apologizing for your “depraved indifference” to us regular people out there, and thus distinguish yourselves from the arrogance of Turing’s Shkreli, who truly is a villain? Mr. Pearson, perhaps you could say you had an epiphany while lying ill, especially after seeing your drug costs?

Please do something soon, as I really need my medication, and I’m not alone. I will be cc’ing this letter to the NY Times, the Wall Street Journal, and several other news outlets. Thank you.

Sincerely,

Leonore Gordon, LCSW