January 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.
 "Voice of the Patient" Funded by Drug Companies 

Federal law now requires FDA to consult with patient and consumer representatives to make sure that their voices are heard by the agency. Unfortunately, the "patients' voices" often seem to sound eerily similar to pharmaceutical company lobbyists, perhaps because 93% of the "patient" or "consumer" groups at FDA meetings received funding from drug companies. 

Are drug companies using patients to get what they want?  Click here to find out
In the News

Over 125,000 adverse events and 1,303 deaths have been reported from devices using various forms of mesh. Many medical devices do more harm than good. What can we do to change this? 

In an invited editorial in the major public health journal, Diana Zuckerman, president of the National Center for Health Research, says the Obama Administration gave into political pressure allowing the FDA to approve medical products based on lower standards of scientific evidence.  Read more  

Senator Elizabeth Warren took a stand for patients and fought against the 21st Century Cures Act. She refused to vote for legislation that lowers standards for new drugs and medical devices, saying that the bill had been hijacked by the pharmaceutical industry. Read more 

In her article in the Providence Journal, USA Patient Network member Meghan Mimnaugh raises awareness about antibiotic safety and superbugs. Rhode Island is one of 30 states that does not publicly report on C. difficile infections, putting Rhode Islanders at risk for this deadly superbug. 

For more news, check out the News section of our website .
USA Patient Network member Jonathan Furman represented us at the "Unapproved Uses of Approved Medical Products" FDA Advisory Committee meeting on November 9-10.
Kim Witczak, Yanling Yu, Veverly Edwards, and Robyn Edwards (above) also spoke at the meeting, as did NCHR president Diana Zuckerman and Government Relations Manager, Jack Mitchell.

FDA Wants to Hear From You!

...on patient engagement at FDA
FDA formed a new program ( Patient & Care Partner Connection)  to get feedback from patient organizations on medical devices. That means you! Do you approve of this program? Do you want to make sure FDA listens to all patients and not just those funded by drug companies? 
Send FDA a w ritten comment before January 6, 2017. USA Patient Network will send comments, but individual patients can too!  For more information click here .

...on manufacturers advertising off-label uses
Doctors are legally allowed to prescribe drugs and devices for any purpose if they have been approved by the FDA for one purpose. That means a doctor can prescribe a diabetes drug for cancer - and vice versa - if the doctor wants to.  Should manufacturers be  allowed  to advertise their  drugs  for these "off-label uses" - treatments that haven't  been proven safe or effective?  
FDA will accept your written comments on this issue until April 10, 2017.
Several members of the USA Patient Network attended the Public Hearing on Unapproved Uses of Approved or Cleared Medical Products
Robert Wright - Austin, TX 

Bob Wright is a Support Group Leader for  Us Too , a national prostate cancer organization.  Bob was diagnosed with prostate cancer in 2006, which was attributed to Agent Orange exposure while serving in the Vietnam War. He has focused his advocacy efforts on educating others about prostate cancer, especially veterans.

Why did you become an advocate?
After being diagnosed with prostate cancer, I made a deal with God to keep me well enough to help others. Since then, I have been committed to keeping my end of the deal.  I became a Support Group Leader for Us Too to support and educate other men suffering from prostate cancer. I started eight years ago and still run a local chapter in Austin, Texas. However, it was not until I attended an American Cancer Society Clinical Oncology meeting with another Us Too member, Sanford Jeames, that I discovered the importance of advocacy. I discovered that funds were not allocated for prostate cancer at the city, state, and federal policy level unless you advocated for it. Once I discovered this, I wrote a letter to my local congressman and began my advocacy journey. Sanford is also the person who told me about the National Center for Health Research's Patient Training Workshops .

Why is early detection so important for veterans?
Many Vietnam veterans were exposed to the toxic chemical Agent Orange, which has been associated with a more aggressive form of prostate cancer. When comparing Vietnam veterans in country to those that were not, "in-country veterans" had a 52% higher incidence of prostate cancer and a 71% higher grade of disease. That means these veterans are at higher risk than most men and it is especially important to detect their prostate cancer early before it is inoperable.

What are some challenges facing the prostate cancer community? 
The US Preventive Task Forces no longer recommends prostate cancer screenings except for men who have symptoms or are at high risk. This is controversial.  The Task Force concluded that since treatment often causes incontinence and/or erectile dysfunction, and since most prostate cancer grows very slowly and isn't deadly, screening too often does more harm than good.  The problem is that it isn't always obvious who is at higher than average risk.  Obviously, Vietnam veterans are, but many other men are too.  Patient advocates want to save the lives of other patients, using the information we gain about well-designed research and advocating for better policies.  But sometimes research can't tell us everything we need to know.  I'm worried that as fewer men got screened, more will be diagnosed with prostate cancer at an advanced stage. 
As I became involved with the USA Patient Network, I was pleased to have the chance to review the Cancer Prevention and Treatment Fund's patient booklet on prostate cancer screening. I think it helps men decide whether screening is right for them.

What are your goals for the USA Patient Network?
My goal for the USA Patient Network is to encourage and share with all advocates for cancer survivors and their families the "lessons learned" on our Survivor Journey.  Through support, education, and advocacy we will move forward toward not just surviving but thriving with our disease challenges and obstacles.  I believe that patient advocacy is a key ingredient to becoming whole again, and I welcome becoming a part of any cancer patient`s journey.

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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