February 2017 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.
Upcoming Introductory Workshop
June 2-3, 2017
Washington, DC

We are accepting applications for our upcoming Introductory Patient Advocacy Workshop!  
Please share with anyone you know that might be a good addition to our Patient Network! For more information please visit our website:
https://www.usapatientnetwork.org/workshops
|| NEWS ||NEWS
 Faster FDA Approvals May Cost Patients 

President Trump told top drug company executives he plans to work with them and the FDA to speed up the drug approval process. He also wants drug prices to be dramatically reduced. NCHR president Dr. Diana Zuckerman explained to  The New York Times  that when drugs are hastily approved, patients end up with expensive treatments that don't work as well as older drugs. 

This can already be seen with the many cancer drugs currently on the market that are not effective. CNN's story on ineffective cancer drugs highlighted Dr. Zuckerman's study as just one of many examples of this. 

Even though President Trump wants faster approvals, Dr. Zuckerman told  The Washington Post  that this will be delayed because his hiring freeze means the FDA can't hire the scientists they need.
...More in the News

OFF-LABEL USE: SHOULD DRUGS DO DOUBLE DUTY?
Doctors commonly prescribe drugs for conditions that are not FDA approved. This is known as off-label use and may not always be good for patients.  In fact, 1 in 5 prescriptions are written for off-label use according to JAMA. Currently, advertising for off-label use is illegal, but that could soon change. Find out how you can make a difference and protect patients in Consumer Reports: [ Read more

LONGER FDA REVIEW TIMES ASSOCIATED WITH LESS ADVERSE EVENTS
A new analysis found that high risk heart devices with longer FDA review times before approval had less problems after they were approved. This means fewer adverse event reports and a lower chance of serious injury or death. [ Read more ]

THE JOY OF HEARING PATIENTS OUT 
One doctor decided that she would take the time to listen to her patients without interrupting. She was surprised to find out that hearing patients out did not take as long as she expected.  After listening to her patients, she heard something she had never heard a patient say before, "Just talking about all this has actually made me feel better." [ Read more]

TRUMP'S HHS PICK FAVORED DRUGMAKERS, DEVICE MAKERS AND DOCS
The new Secretary of the U.S. Department of Health and Human Services, Rep. Tom Price, is no fan of Medicare or Medicaid. And he has repeatedly protected pharmaceutical companies and device manufacturers. He also lied about some of his stock holdings to the Senate. NCHR president Dr. Diana Zuckerman commented on his nomination in  Kaiser Health News"He's clearly shown in this case and in other ways allegiance to the corporate interest, but not to the patient interest." [Read more]

MILLIONS OF WORRIED PATIENTS WITH PRE-EXISTING CONDITIONS
If the Affordable Care Act (ACA, also known as Obamacare) is repealed or replaced, what will happen to patients with pre-existing conditions? If you buy a new health insurance policy and already were diagnosed with a medical problem, you could become uninsurable. Millions of Americans with diseases such as diabetes, heart disease, or a history of cancer were able to get affordable health insurance coverage thanks to the ACA. Dr. Diana Zuckerman told  Times Standard  that before the ACA, many of those patients were just "one hospitalization away from bankruptcy." [ Read more ]

For more news, check out the News section of our website .
OUR MEMBERS IN ACTION action
Patient Network Member  Amanda Rusmisell was featured in Health Watch USA's February Newsletter. She educated others about the dangers of the Essure contraceptive device and the accomplishments of the Essure Problems Group.

Patient Network member Rachel Brummert is on both the General and Plastic Surgery Devices advisory committee and the Gastroenterology and Urology Devices advisory committee with meetings coming up this spring. Thank you Rachel for committing your time to voice the patient perspective in these influential meetings.

Want to be more involved?
Apply to serve on the Board of Directors!

We are accepting applications for our Board of Directors! If you are interested, please email a cover letter and resume to Miara at mj@center4research.org.
|| SPOTLIGHT ON A NETWORK MEMBER ||Spotlight
Veverly Edwards and Robyn Edwards 
- Memphis, TN -

Veverly and Robyn Edwards participated in our October 2016 Workshop. They are members of the Consumers Union Safe Patient Project. Veverly became a patient advocate after her 13-year-old daughter Robyn, an honor student and athlete, suffered a stroke that left her permanently disabled. Since then, Robyn's health has improved dramatically, she graduated from high school and attended Orange Coast College. Robyn and Veverly continue to fight to improve patient safety and to protect patients' rights to prevent this from happening to others. Veverly published a book, God's Miracle Among Corruption in Idaho   revealing the misconduct in the Idaho healthcare system.   

Why did you become an advocate?
I (Veverly) started my advocacy journey after nearly losing my daughter Robyn to a massive stroke, following a misdiagnosis by a neurologist that prescribed Zomig for a rare form of migraines. Robyn had been experiencing numbing sensations, which they later found out were mini strokes. Three days after her visit with the neurologist, Robyn had a massive stroke and was airlifted to Primary Children's Hospital where she was declared brain dead. I refused to give up on Robyn and fought for my daughter's life.        

I became an advocate when I realized had no one to turn to or to help, even though this was clear medical negligence. Those who should have helped me were actually working against me. As I was going through the process, reporting to the right authorities, I realized the people in power had the ability to suppress information and tried to paint me as misguided. It was so hard to persevere but that did not stop me.  I wrote to medical boards and the American Bar Association. I wrote a blog, to online newspapers, and I even wrote a book to make sure I had a paper trail. I attended a Patient Safety Conference in California where I met a young lady that knew a patient advocate from Nebraska who introduced me to Lisa McGiffert, which is how I became a part of the  Consumers Union Safe Patient Project. I have been advocating for patient safety since then.

What is your advice to other advocates?
It is important to get your voice out there so others do not fall into the same pit. It is just as important to meet others in the same situation since advocacy can be a lonely road.  Patient advocates need to connect and have a community that can provide help and hope for those fighting to bring down the walls against us in the healthcare system.  Patients have no safety nets or walls to protect them. Patient advocacy groups are a lifeline to patients.  

What is your greatest accomplishment as an advocate? 
One of my greatest accomplishments as an advocate was having the opportunity to participate in the public hearing at the FDA for Unapproved Uses of Approved Medical Products Advisory Committee meeting on November 9-10, 2016. Another accomplishment was having the opportunity to speak with my Senator Lamar Alexander to lobby at the national level for issues that I am against. Honestly, my greatest accomplishment has been Robyn's life and my family overcoming all that we have been through but still being able to move forward.         

What are your goals for the USA Patient Network?
My goals for the USA Patient Network are to make sure that patients' rights are protected, to make sure that patients are safe and to push for transparency in the healthcare system. I would like to focus more on neurological issues and get the network more involved in areas of brain death and negligence at doctors' offices. The USA Patient Network needs to continue educating advocates and inspiring us to move forward. 

STAY CONNECTED:
Like us on Facebook   Follow us on Twitter
For more information about research results regarding numerous new drugs and devices, see www.center4research.org and www.stopcancerfund.org .
USA Patient Network | mj @center4research.org | Washington DC