March 2017 Patient Network Digest
Visit our website to see what we've added! 

 Please email Miara at if you have any comments or suggestions.
We are accepting applications for our upcoming
Introductory Patient Advocacy Workshop
June 2-3, 2017
Washington, DC

Please share with anyone you know that might be a good addition to our Patient Network! 
For more information please visit our website:
 What If "Trumpcare" Becomes Law?  

How would the House Republicans' plan to repeal and replace Obamacare affect health insurance coverage?  The bipartisan Congressional Budget Office (which is chaired by a Trump appointee) says 24 million Americans would lose health insurance with in the next few years, and even more later.  It would save the federal government money by cutting the number of patients on Medicaid and cutting subsidies for lower income Americans, especially those 40 and older. To see the debate,
c lick   here .

You're Invited!
Every year we honor Foremothers who have broken barriers for women while improving the lives of men, women, and children. We also honor a Health Policy Hero. We welcome you to join us on May 15 in honoring two new Foremothers: Maureen Bunyan, one o f the first African American women in the nation to anchor a local evening newscast and Melanne Verveer,  first U.S. Ambassador for Global Women's Issues. Find out who they are and ticket information here.
...More in the News

The President nominated Scott Gottlieb to lead the FDA. Dr. Gottlieb has made millions working with drug companies and other companies that the FDA regulates. Will he represent your interests as patients and consumers, or corporate interests? [ Read more]

After a meeting with CEOs from the pharmaceutical industry, President Trump highlighted the need for lower drug prices while simultaneously promising to speed up approvals and increase access to new drugs. Dr. Diana Zuckerman told Legal Reader  that although this might sound like a good idea, the FDA's approval process is already too weak, and weakening it further would be unsafe and unfair to patients.

According to the U.S. Government Accountability Office (GAO), FDA failed patients by allowing a harmful device to stay on the market for over two decades, contributing to the injuries and deaths of hundreds of women. GAO recently released a 49-page report that explains the controversy with this common surgical devicereported to have spread uterine cancer to 1 in 350 women who went in for routine uterine surgery [ Read more ]

For more news, check out the News section of our website .
Our Letter on the Right to Try Act

The Right to Try Act claims to help patients who are dying and want to try experimental treatments. In theory, this seems helpful for patients, but the reality is more complicated. Patients already have access to experimental drugs deemed appropriate by their doctors through the FDA's Expanded Access Program. The proposed law would strip away even the most basic safety standards that protect patients from greedy scam artists. The USA Patient Network is committed to protecting patients and wrote a letter to Senators explaining why this bill would put patients in harm's way. Thanks for all your input! Read the letter here  
Diana Zuckerman's short article on the same topic was published in newspapers across the country. Read the full article  here .

Katherine Leon - Arlington, VA 

See SCAD Alliance's
Facebook page here.
Katherine Leon is the co-founder of SCAD Alliance, an organization dedicated to improving the lives of patients with a type of heart disease called SCAD (Spontaneous Coronary Artery Dissection). The SCAD Alliance
 advances science through knowledge and cooperation among healthcare professionals, patients, and their families. Since she was diagnosed with SCAD in 2003, Katherine has been committed to raising awareness about this rare disease and helping other patients.

Why did you become an advocate?
I didn't realize I'd become an advocate in 2003.  I just saw something unfair and wanted to make it right.  At the time, the form of heart attack I had wasn't even considered a heart attack because it isn't caused by cholesterol plaque. Cardiologists considered SCAD a "rare" complication of pregnancy, in which the artery tears and in most cases causes a blockage that leads to a heart attack.  It was unbelievable to me that no one had ever researched SCAD on a large scale.       

What is your advice to other advocates?
Be prepared to be surrounded by those who need you very much, but also to accept feeling utterly alone at times. Often, advocacy requires one step forward and two steps back.  Define your success by the smaller accomplishments, and don't worry about the politics.  

What challenges did you face becoming an advocate?
The first challenge was the prevailing view of my doctors that I should just "get over" this rare thing and enjoy my children.  But there were so many questions: Why did it happen?  Were there controllable risk factors? Were my sons at risk? There were no answers because there had never been widespread research.  

The next challenge was in the form of a warning from my doctors that I would never meet anyone else with SCAD, because it is so rare. Yet, thanks to the Internet, I found 70 other SCAD survivors over the course of four years by chatting on the WomenHeart Inspire community.  I took our stories to the Mayo Clinic and asked for research of SCAD.  Many of these women were founding participants of clinical studies and a DNA biobank at Mayo Clinic, which has provided invaluable foundational research about SCAD. Now, our numbers are in the thousands worldwide and we know that women and men experience heart attack and sudden cardiac arrest from SCAD.

What is your greatest accomplishment as an advocate? 
My greatest accomplishment has been the success of SCAD Alliance, the nonprofit I co-founded in 2013.  Our Board of Directors and Scientific Advisory Board share several key qualities: all are "down to earth" and they care - very, very deeply about SCAD survivors and the scientific discovery related to SCAD.  I'm eternally grateful to those who serve on these boards.  We would never be where we are today without them.           

What can be done to prevent this from happening to others?
This is the $64 million question! Only more and more expansive research will discover the cause of SCAD, how to diagnose it effectively, the best way to treat it, and the implications for survivors through their life span.  SCAD Alliance is dedicated to leading this process.  

How should we move forward dealing with this issue?
We should break silos and collaborate.  To move forward and advance the science of any disease, researchers must embrace a global view, share data and involve patients in the process. 

What are your goals for the USA Patient Network?
I hope USA Patient Network will galvanize the movement to incorporate patient insight into all initiatives related to diagnosis, safety, clinical research, product and drug development, and process improvement. Now, more than ever, our anecdotal data and expertise as patients is vital to improve healthcare for all.  

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For more information about research results regarding numerous new drugs and devices, see and .
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