June 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
 Right to Try? Or Right to be Exploited Before You Die?  

"Right to Try" laws that allow patients to have easier access to experimental drugs promise more than they can deliver. Patients already have a "right to try" experimental treatments through a program where the FDA provides safeguards and ensures that desperate patients aren't exploited by greedy doctors or companies. Check out Dr. Zuckerman's blog here and the infographic below:



...More in the News

FASTER FDA APPROVAL BUT MORE SAFETY ISSUES 
Researchers at Yale School of Medicine found that nearly a third of medications approved by the FDA from 2001 through 2010 had serious safety issues years after they became available to patients. 71 of 222 drugs were withdrawn, required a "black box" warning or a safety announcement alerting the public of new risks.[ Read more]


SHOCKING DIAGNOSIS: BREAST IMPLANTS GAVE ME CANCER
After surviving breast cancer, who would have ever expected to get another type of cancer from breast implan ts? Unfortunate ly,  a growing number of women are being diagnosed with this
devastating disease - breast implant associated anaplastic large cell lymphoma (BIA-ALCL) . This potentially fatal lymphoma can affect women who got breast implants after mastectomy or for breast augmentation, and it can be caused by saline or silicone gel breast implants. And, hard as it is to believe , some insurance companies have refused to cover the removal of the breast implants which caused them to have cancer in the first place. [ Read more ]  

For more news, check out the News section of our website .
OUR MEMBERS IN ACTION action
Welcome to the new members of the Patient Network!! 
After our Introductory Patient Training workshop on June 2-3, our network has grown by over 20 members. Great news! Visit our website to find out more about them in the Members Only section. 
OUR COMMENTS TO FDA 

on establishing a new 
Office of Patient Affairs  to enhance patient engagement efforts across the FDA. Read the full comments here .   


 
MEETING ON BREAST IMPLANTS AND CANCER RISK GOES WELL WITH REP. ROSA DeLAURO AND PATIENT NETWORK MEMBERS 
On June 15, Patient Network members  Chandra DeAlessandro Jamee Cook , and  Raylene Hollrah
met with Congresswoman DeLauro to discuss the  lack of safety data on breast implants, including inadequate warnings about developing cancer of the immune system. Rep. DeLauro was encouraging and supportive, and we look forward to working with her!
PATIENT NETWORK MEMBER SPEAKS AT WORKSHOP
Patient Network member Jeremy Lew  came to Washington DC as the keynote speaker at the Introductory Patient Training Workshop on June 2-3. His moving story inspired the participants to want to take action.
Kim Witczak spoke at our October 2016 workshop
F DA APPROVAL DOESN'T GUARANTEE DRUG SAFETY
Patient Network member  Kim Witczak told  DrugWatch the shocking story of her husband's suicide caused by a sleeping pill he was prescribed. Just because a drug has been FDA-approved, doesn't guarantee it will be safe for everyone taking it.  But with antidepressants, the companies aren't adequately warning patients of the risks of suicide . [ Read more]

PATIENT NETWORK MEMBER WINS IN COURT 
Patient Network member,  Wendy Dolin won her lawsuit against GlaxoSmithKline, which is the first lawsuit where a jury found a brand name drug maker liable for a generic drug injury. Her husband was taking Paroxetine, the generic version of PaxilUsually, legal actions cannot be taken against generic drug makers for failing to provide adequate warnings on their label, so this win has implications for many patients harmed by generic drugs.  [ Read more ]
NEW WEBSITE TOOL: GETTING TO FDA
We now have directions on the website that explain how you can get to the FDA headquarters if you want to go to a public meeting. [ Click here]
|| SPOTLIGHT ON A NETWORK MEMBER ||Spotlight
Marie Garlock - Durham, NC 

Marie Garlock is a Breast Cancer Action Community Leader for Change for North Carolina. A UNC-CH PhD candidate, Marie's research focuses on two advocacy areas often missing from popular cancer campaigns: (1) more systems-level approaches to cancer prevention; (2) quality, affordable healthcare that prioritizes safety, efficacy, and patient-provider dialogue.  Through commitment to USA Patient Network, Marie wants to honor persons with advanced illness with whom she works in story-based arts and oral history programming, psychosocial support, and health communication efforts.   

Why did you become an advocate?
I advocate as a daughter whose mother and best friend died from a fatal chemotherapy side effect to the liver at age 53, in 2013. While living with metastatic breast cancer, my mom Barbara also experienced appendix rupture from Avastin, a drug that resulted in loss of organ functions or life for thousands of others. Ava stin is no longer approved for breast cancer because the risks outweigh the benefits. It's a clear-cut case for why drugs shouldn't be rushed through FDA approval pathways that lower safety and efficacy standards. It was approved on a narrow view -- tumor progression -- that doesn't consider the whole person in whom the tumors reside. 

Our family also experienced the debilitating stress and ultimately successful overturning of a healthcare insurance company's denial of proton radiation therapy  to help my mom's spine. It's frustrating to experience denial of healthcare coverage for urgent measures that have been proven to help patients, while simultaneously, coverage is approved for expensive and only partially-understood drugs and devices. Before Obamacare and between jobs in 2006, Barbara found that adequate health insurance was prohibitively expensive  because of her pre-existing condition
S he was unable to afford a blood test for metastasis, which was needed to mobilize healthcare resources earlier for what became a stage IV diagnosis. 

"You start noticing you're not alone."
As a gifted lawyer and pastoral counselor, Barbara taught me that participating in patient advocacy is highly beneficial for countless others facing similar challenges, and for patients' and loved ones' well being.
     
What is your advice to other advocates?
Trust in your lived experience as a patient or caregiver. No matter how painful and grief-inducing at first, it's vital to speak up and act to change health rights violations -- against your own body or others' bodies you care about. You become part of something much larger that begins to lift this heaviness. You start noticing you're not alone.
  
What challenges did you face becoming an advocate?
Cancer research funding streams and FDA regulatory standards often focus on "breakthroughs". This matches neatly with drug companies' marketing narratives -- e.g., Go Boldly Campaign -- a nd philanthropies' fundraising narratives -- e.g., racing for or prematurely publicizing a genetics-based cure to cancer; and profiling survivors with lower stage cancers. But there is more to patient advocacy than these 
narrowly  optimistic stories.  

What is your greatest accomplishment as an advocate? 
I've loved touring hospital systems, medical schools, and university residencies with a performance-based patient advocacy project called "Flipping Cancer." This theater, dance, and visual art-based project is an adaptation of my research interviews with patients who face stage IV cancers, their family caregivers, and healthcare providers. Through story-based arts workshops offered in hospital settings, I then incorporate patients living with cancer, medical students, and healthcare professionals into the performance to tell their important stories. 
           
What can be done to prevent this from happening to others?
We must call into question the rubber-stamp given to drugs, devices, and healthcare policies that may actually harm or violate patients, just because the word "innovation" is involved. We must seek a more pro-health economy.
"The current scope of cancer awareness and fundraising must expand into deeper advocacy and action, informed by listening to people with advanced cancers rather than imposing top-down agendas."
How should we move forward dealing with this issue?
Patient advocates' honest, un-glossy stories of facing healthcare challenges -- and affirming their and others' dignity by acting for change -- help us give context to scientific data. The current scope of cancer awareness and fundraising must expand into deeper advocacy and action, informed by listening to people with advanced cancers rather than imposing top-down agendas.

What are your goals for the USA Patient Network?
I hope USA Patient Network continues breaking down barriers between otherwise separated types of disease- and injury-focused advocacy. Our network is a rare and refreshing space to join across diagnoses to share knowledge and strengthen our calls for sensible regulatory reform.  

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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