July 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.
|| NEWS ||NEWS
 Healthcare Bill in the Senate 

The Better Care Reconciliation Act of 2017, the Senate's proposal to repeal and replace the ACA, would result in millions of the most vulnerable Americans being unable to afford health insurance that is worth having. Senate Republicans tried and failed to pass three versions of the bill, all of which would have harmed millions of Americans. Who designed these terrible bills?  It is easier to understand the Senate and House bills if you realize the goal is to provide tax cuts for the rich. We urge the public to keep opposing these bills, to make sure they don't rise from the ashes. Learn more and take action  here.
...More in the News

FDA EASES REGULATION FOR SOME MODERATE-RISK DEVICES
As a result of the 21st Century Cures Act, FDA won't be requiring any proof of safety on more than 1,000 devices. These devices include dentures, menstrual cups and scented menstrual pads, umbilical clamps, and certain hearing aids. [ Read more]

FDA DEAL WITH MEDICAL DEVICE COMPANIES RELAXES RULES ON REPORTING PROBLEMS
Thank you to those of you who called your representatives to let them know you disagreed with this bill.
Unfortunately, t he U.S. House passed a fee-reauthorization bill for FDA that exacerbates underreporting of device malfunctions, putting patients at risk. The Senate hasn't voted on the bill yet.
 [
Read more ]  

TRUMP'S PICK FOR CDC DIRECTOR HAS ADVOCATES WORRIED
Trump appointed a CDC director with no research skills and a track record of treating patients with unproven and potentially dangerous "anti-aging" hormones and supplements. Dr. Zuckerman says "this makes no sense." [Read more] And she also partnered with Coca Cola on an anti-obesity campaign that didn't mention the need to reduce consumption of soft drinks.  [Read more]

For more news, check out the News section of our website .
OUR MEMBERS IN ACTION action
USA PATIENT NETWORK DRAFTS VISION AND MISSION STATEMENTS

VISION
Ensuring that medical treatments involving drugs or devices are
safe, effective, and affordable.

MISSION 
An independent voice to strengthen the safety and effectiveness of pharmaceuticals and medical devices for patients through advocacy and education.
Patient Network members Yanling Yu, Rachel Brummert, John James, and Rex Johnson  share their views at a meeting with the Centers for Disease Control and Prevention (CDC) in July 2017.

PATIENT NETWORK MEMBER PUBLISHED IN BMJ
Congratulations to Network Member Lisa Freeman for getting published as a co-author of " An Invitation to Patient and Family Engaged Care for Consumers: What it is, Why it Matters and How Patients and Families Can Engage," a response to an editorial in the BMJ.
#WHATSTHEFIX SPEAKER FROM PATIENT NETWORK 
Network member Tami Rich spoke at a WeGo Health Chat in JuneHer presentation about her journey as an advocate for her son's heart condition was called "Bridging the Gap Between Caregiver and Industry Changer" and you can watch it here
DID YOU SEE THE JUNE 2017 INTRODUCTORY WORKSHOP PHOTOS? 
You can check them out here.
|| SPOTLIGHT ON A NETWORK MEMBER ||Spotlight
Cal Pierce - Washington, DC 

Why did you become an advocate?
As a thyroid cancer survivor since 1984, my experience in 2005 undergoing radioactive iodine therapy for a recurrence made me realize that I needed to learn more about thyroid cancer and become a better advocate for my own health. I started attending monthly support group meetings organized by Gary Bloom and volunteers involved in ThyCa: Thyroid Cancer Survivors' Association. 

ThyCa members maintain dozens of support groups throughout the United States ( http://thyca.org/sg ), where more than 55,000 new cases of thyroid cancer occur each year. After I got up to speed about patient-centered care for thyroid cancer, I wanted to "pay it forward" by using my background as a patient and medical journalist to help others, including many who are just starting their thyroid cancer journeys. As a facilitator at ThyCa's local meetings and workshops, I've met dozens of fellow patients and seen how patient advocacy helps us take responsibility for our health.
     
What challenges did you face becoming an advocate?
Given the long delay between my initial diagnosis and treatment and my involvement with ThyCa, I needed to learn a lot about advances made in detecting and treating thyroid cancer, and about dealing with the lifelong need for follow-up care. Another challenge was recognizing and respecting differences in how thyroid cancer survivors view their disease experience and apply their own values in making decisions about surgery, medical management, and long-term health priorities.

What is your greatest accomplishment as an advocate? 
At ThyCa workshops, I've facilitated roundtable discussion sessions focusing on complementary approaches to health, in which participants shared their experiences with using integrative health modalities such as exercise, nutrition, meditation, and yoga. Together, we've learned about steps we can take to lead healthier lives, whatever medical challenges we face. I consider this kind of self-empowerment to be an important part of patient advocacy.

What can patients do to improve their prospects for better outcomes?
Patients do better when they educate themselves, ask questions when communicating with health care providers, express their own preferences about disease management, and act as their own advocates. All of that is much easier said than done! The best strategy is to network with other patients facing similar challenges, and learn from their experiences and perspectives. This is why it's so important to create and nurture organizations like ThyCa that encourage patients to team up and help each other achieve better health.
           
What is your advice to others just starting their advocacy
Become a lifelong learner, and use your knowledge to help other patients. Look for a patient support group where you can contribute. If you don't find a suitable group in your area, connect with fellow patients via email lists, online forums, or social media. Consider volunteering to organize and facilitate a local support group. One dedicated volunteer can accomplish a lot! Engaged volunteers are the lifeblood of patient support and advocacy organizations. But even when people don't become advocates in a broader sense, they can benefit from becoming advocates for their own care. The lessons I've learned from being an advocate for thyroid cancer patients have helped me cope with other health challenges in my own life.

"The lessons I've learned from being an advocate for thyroid cancer patients have helped me cope with other health challenges in my own life."
What are your goals for the USA Patient Network?
There's great potential for patient support and advocacy organizations to collaborate, learn from each other, and better serve the millions of patients who need help in dealing with health challenges of all kinds. I believe that this prospect is just as important as the USA Patient Network's upward-facing effort to shape legislation and regulations that represent the interests of patients. By developing and sharing tools and resources for helping patients at the grassroots level, patient advocates can work together to develop an infrastructure that promotes patient-centered care and self-management.

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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