Tuesday, March 29, 2016

Register for the Fourth World Parkinson Congress in Portland, Oregon, 2016: September 20-23!!! http://www.wpc2016.org/


Join us in Portland, Oregon for the 4th World Parkinson Congress 

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!

Monday, March 14, 2016

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

Leonore Gordon, LCSW
130 8th Avenue #3A
Brooklyn, NY 11215
(718) 783 1986
(347) 489 9123

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.4th 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.
Leonore Gordon, LCSW

Join OUr 2016 Unity Walk Team!

Parkinson's Unity Walk

Unity Walk collage from 2015 Walk
Unity Walk collage from 2015 Walk


Join/support our team’s efforts!
Welcome, loyal former and hopefully new members of TEAM Brooklyn Parkinsons Group & Friends! We need your donations and support to fund research to cure our disease! Last year nearly 30 people joined our team, the most we'd ever had, and all of us together raised 16,900.00. Let's try to reach 17,000 this year! We need all of you to help! We are participating in the Parkinson’s Unity Walk in New York's Central Park, to help raise awareness and funds for Parkinson’s disease research. 
This year, Unity Walk organizers asked for April 30th to avoid Passover, but NY City gave them the fourth Saturday, as usual, and they were unable to change that. We are all very sorry about that, but many of us who celebrate the holiday are still, at the very least, still raising money for a cure for our disease.

BPG & Friends have again formed this team because more than one million people in the U.S. are living with Parkinson’s disease. The cause is unknown and while treatment options help to manage symptoms, currently there is no cure. Every walker and donor will bring the Parkinson's community one step closer to finding the cause of and cure for Parkinson’s disease. 

Please either join our BPG team and forward this e-mail (or create your own) to your own friends and family, or please simply make a donation. 100% of donations go to research. Thanks! Your trustworthy capain, Leonore Gordon
- See more at: http://support.unitywalk.org/site/TR/Walk/General?team_id=1158&pg=team&fr_id=1040#sthash.lexpDxs3.dpuf