September 2016 Patient Network Digest
Visit our website to see what we've added! 

 Please email Miara at  mj@center4research.org if you have any comments or suggestions.
|| NEWS ||NEWS
Farewell  from Margaret

Hi Everyone,
 
I wanted to let everyone know that I am leaving NCHR to work at the FDA, where I will be a reviewer in the division of Vaccines and Related Blood products. I will have the opportunity to work on safety and efficacy of vaccines and allergy products, which are important issues to me as a researcher and advocate. I have really enjoyed getting to know everyone in the Patient Network over the past year. Your stories have been an inspiration to me, and will shape how I look at the risks and benefits of new treatments.
 
Miara Jeffress is the new Project Director for the Patient Network, so please direct any questions you have to her ( mj@center4research.org). I will still be on the list serv, because I want to stay up to date on all the issues we are discussing and I hope to continue to work together with all of you. 

Best wishes,
Margaret Dayhoff-Brannigan
Introducing....our new logo!


We're excited to have an official logo now! We chose one that represents the inter-connected network we've become. We hope you like it as much as we do!
-- Deadline Approaching! --
Upcoming Introductory Workshop
October 14-15, 2016
Washington, DC
We have just a few slots left for our upcoming introductory patient training workshop! 
Please share with anyone you know that might be a good addition to our Patient Network!

For more information please visit our website.
In the News

Parents turned to social media to take a stand against the soaring price of Mylan's EpiPen.   [Read more]

Patient advocates help patients navigate the complex healthcare system.  [Read more]

For more news, check out the News section of our website .
|| OUR MEMBERS IN ACTION ||Action
Patient Network members Melanie Goshgarian and Angela (Desa) Lynch and other Network members met with Members and Congressional staff in the U.S. House and Senate to discuss safer medical devices and Ariel Grace's Law and the Medical Device Guardians Act on September 13 and 14. 

Patient Network Project Director, Dr.  Miara Jeffress attended a workshop on August 29  at the FDA on Diabetes outcome measures. Currently, diabetes drugs  are measured on whether or not they lower levels of hemoglobin A1c But what are the real health outcomes that patients care about? FDA Commissioner Robert Califf  opened the meeting asking what should we measure, how, in whom and  how do we involve  more  people Everyone  agreed quality of life  should be measured.

NCHR staff  Amelia Murphy and Natalie Rosseau attended " Is the cure worth the cost? The debate over the price of specialty drugs " at the conservative American Enterprise Institute on September 12.  Panel members debated how to price life-saving drugs.  Unfortunately, even though FDA barriers are lower and there are faster approvals, this is not helping patients. Drug prices (especially for cancer drugs) continue to skyrocket, even though many are not effective. Speakers representing industry justified high costs, saying it is expensive to develop new drugs. 

If you have been involved recently in any advocacy activity, we would love to hear about it!  
Email Miara at mj@center4research.org so that we can include you in our next digest.
|| SPOTLIGHT ON A NETWORK MEMBER ||Spotlight
Wendy Dolin - Chicago, Illinois

Wendy Dolin is the founder of Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD), a nonprofit which honors her husband Stewart Dolin and other victims of akathisia.  Akathisia is  agitation caused by many types of drugs , such as  antipsychotics and  antidepressants, which can  lead to suicidal thoughts . They are  raising awareness and educating the public about the dangers of akathisia .

Why did you become an advocate?
I became an advocate after losing my husband in the summer of 2010. My husband, Stewart Dolin, was an accomplished lawyer. When he experienced  work-related anxiety, he was prescribed the generic version of Paxil. After just 6 days of taking this medication, he continued to experience anxiety and restlessness that drove him to take his own life. I felt like I had missed something and I searched  for answers for about a month. That's  when I finally discovered that my husband was suffering from akathisia.  

What is your advice to others that are just starting their advocacy?
I h ave found these 3 pieces of advice to be very effective and useful.  First, make sure you establish a mission statement and stick to achieving that mission. Second, Kim Witczak (another Patient Network member) was so helpful and let me know the importance of creating a diverse boardAnd third, make sure you monitor and update your website so your local agency can have a global reach. It  is important to have an active website to share your personal story with others outside of your local community.  

I also learned that it is important to attend conferences locally and nationally to educate healthcare professionals regarding an under-reported but very deadly side effect. Materials that can be handed out give attendees a way to share what they learned. This is how we spread awareness, which is part of our mission.     

What can be done to prevent what happened to your husband from happening to others?
I think a black box warning should be issued for antidepressants listing akathisia as a side effect for patients over the age of 24. Making sure consumers and doctors receive drug safety information as well as mentioning akathisia in TV ads would prevent this from happening to others.  

What are your goals for the USA Patient Network?
My goals for the Patient Network are to raise awareness about this facet of suicide and to educate others about akathisia as a side effect in older adults taking antidepressants.  
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USA Patient Network | mj @center4research.org | Washington DC