Patient Partners

The USA Patient Network consists of patient partners from all over the United States including AZ, AR, CA, CT, DC, FL, GA, HI, IL, IN, KS, KY, MD, MA, MN, MO, MS, NY, NC, OH OR, PA, RI, SC, TN, TX, VA, VT, WA and WI. We are working hard to expand our reach to include patient partners from all 50 states in our group. Our patient partners come from a broad range of organizations and and advocacy groups. Many have either experienced, or seen a family member experience complications from a drug or medical device - complications that could have easily been avoided by increased focus on safety and efficacy. If you are interested in joining please contact us.

Patient Advocates Working Together to Improve Patient Safety 

November 10, 2016: Several Patient Network members testified at an FDA meeting about unapproved usage of approved medical products. They wanted to make sure FDA took patient safety into account.

Jonathan Furman testified about patients getting harmed by off-label use

Yanling Yu, Kim Witczak, Veverly Edwards, and Robyn Edwards

Jack Mitchell testified on behalf of the Patient, Consumer, and Public Health Coalition. Read his testimony here.

Katherine Leon

Arlington, VA

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.  

Wendy Dolin
Chicago, IL

Wendy Dolin is the founder of Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin (MISSD), a nonprofit which honors her husband Stewart Dolin and other victims of akathisia. Akathisia is agitation caused by many types of drugs, such as antipsychotics and antidepressants, which can  lead to suicidal thoughts . They are raising awareness and educating the public about the dangers of akathisia.

 

Why did you become an advocate?

I became an advocate after losing my husband in the summer of 2010. My husband, Stewart Dolin, was an accomplished lawyer. When he experienced  work-related anxiety, he was prescribed the generic version of Paxil. After just 6 days of taking this medication, he continued to experience anxiety and restlessness that drove him to take his own life. I felt like I had missed something and I searched  for answers for about a month. That's  when I finally discovered that my husband was suffering from akathisia.  

What is your advice to others that are just starting their advocacy?

I have found these 3 pieces of advice to be very effective and useful.  First, make sure you establish a mission statement and stick to achieving that mission. Second, Kim Witczak (another Patient Network member) was so helpful and let me know the importance of creating a diverse board. And third, make sure you monitor and update your website so your local agency can have a global reach. It  is important to have an active website to share your personal story with others outside of your local community.  

I also learned that it is important to attend conferences locally and nationally to educate healthcare professionals regarding an under-reported but very deadly side effect. Materials that can be handed out give attendees a way to share what they learned. This is how we spread awareness, which is part of our mission.     

What can be done to prevent what happened to your husband from happening to others?

I think a black box warning should be issued for antidepressants listing akathisia as a side effect for patients over the age of 24. Making sure consumers and doctors receive drug safety information as well as mentioning akathisia in TV ads would prevent this from happening to others.  

 

What are your goals for the Patient Network?

My goals for the Patient Network are to raise awareness about this facet of suicide and to educate others about akathisia as a side effect in older adults taking antidepressants.  

Lisa Vega
Staten Island, NY

Lisa just passed her 7-year "cancer-aversary" as a breast cancer survivor. She is celebrating by focusing her advocacy efforts on bringing awareness to women of color. In her own journey, she found that women in the African American and Latino community who want to participate in clinical trials don't have the information they need, and she hopes to change this.

 

Why did you become an advocate?

The mortality rate for breast cancer is very high in my community (in New York) and among women in the African American and Latino community. I have found that people who get diagnosed are overwhelmed and don't seek any follow-up treatment. I became an advocate to help people find the strength to deal with their diagnosis and to help them know how to talk to their doctor about their concerns. In my journey to become an advocate, I learned how important it is for African American and Latino women to participate in clinical trials, but that there was not information to help them talk to their doctor about it. There are no bulletin boards with information, and doctors do not mention any options. I want to bring awareness to the lack of diversity in clinical trials, and help people in my community get involved.

 

How have you brought your knowledge of research issues to your community?

After the Advanced Workshop, I took the information I learned about the clinicaltrials.gov website, and told people where to go and how to look for trials. I have told them not to be afraid to ask questions of their doctor, and to ask about possible clinical trials if there are no treatment options. I know that there are benefits and risks to clinical trials, but my mission is to get the information out so that more women of color have a chance to participate.

 

What is your greatest accomplishment as an advocate?

I have reached women who would never have gone to the doctor. Women who have said, "I have a lump, what do I do?" I helped them come up with good questions to ask their doctors, and to seek appropriate treatment. I have told them they need to bring a list of questions to the doctors, and not leave until they are all answered.

 

What are your goals for the Patient Network?

I would like to become a more active member of the Network. I have been listening and learning, and now I want to push forward. I am looking forward to writing letters to my representatives, and focusing on changes I can make working with the local government in my community.

Dru West
Petaluma, CA

Dru became a patient advocate after her daughter Julia died in 2013 from massive pulmonary embolisms while using NuvaRing. Since then she has focused her advocacy efforts on educating young women about the risks associated with hormonal birth control. She will be attending our advanced workshop next week. During her time in DC, Dru will also be meeting with the National Women’s Health Network to improve the quality of information given to women who are planning to use hormonal birth control.

 

What challenges did you face becoming an advocate?

After my daughter’s death, I wanted to do something. I asked myself, “what can I do?” and wondered, “what is possible?” Unfortunately, because of confidentiality in lawsuits, it can be very hard to connect with other families that have also lost their daughters in the same way. I was lucky enough to meet Karen Langhart and Joe Malone (another Patient Network member) who were instrumental in educating me and helping me start my advocacy work.  

 

My next challenge was to educate myself about the whole process. Not just the ins and outs of hormonal birth control risks, but also the system that allows for the approval of drugs that have significant safety risks.

What is your advice to others that are just starting their advocacy?

Don’t give up! Really take the time to educate yourself about the whole process, to understand your issue and the system. I’m new at this too and connecting with others has been invaluable to me, I have found it takes a village of advocates to work together on an issue.

What are your goals for the Patient Network?

I enjoy learning and understanding what other groups and individuals are doing, and learning from each other. I’d like to use the network to build a larger community, and find common issues we can all work together on.

Angie Firmalino
Tannersville, NY

I was harmed by a medical device called Essure, a device that was supposed to provide permanent contraception. I started a Facebook group to warn other women about that device. When I started to see the enormous harm that it had done to so many women, I started to get angry. The more research I did, the more my anger grew. What I learned opened my eyes to a very shocking reality about drug and device approval, and postmarket surveillance. I made a commitment to fight until Essure is off the market. I will continue to help educate other women harmed by Essure and offer them support.

 

What is your greatest accomplishment as an advocate?

We got the FDA to call a public hearing on Essure, which led them to implement a black box warning, create a doctor-patient checklist, and require new postmarket trials of the device. My group has also lobbied Congress and earned the attention of many congressmen and women. One congressman, Mike Fitzpatrick, has introduced a bill called the E-Free Act H.R. 3920. If passed, this bill will force the FDA to withdraw approval for Essure.

 

What are your goals for the new patient network?

My goals are to connect with other patient advocates and work together with them to build a better FDA.  We need stricter medical device approval processes. The FDA needs better funding for postmarket surveillance. There needs to be a functioning adverse event reporting system that is easy to navigate and pull data. There is a lot of work to be done to try to bring change to the FDA.  Public safety needs to come before industry profits. Unfortunately, it is the other way around right now.

 

How do you feel about the FDA requiring a new "black box warning" label for Essure, as well as calling upon Bayer to conduct surveillance that will assess "risks of the device in a real-world environment"? Was it enough? If not, how do you think we should move forward in dealing with this issue?

 

I feel outraged. A black box warning is a slap on the wrist to the manufacturer. Requiring THEM to conduct postmarket surveillance is insulting because the patients have provided enough data to prove the risks outweigh the benefits, and that the safety and efficacy of Essure are not what the manufacturer portrays. IF the FDA thinks that this device is dangerous enough to need a black box warning, and more studies are needed, the LEAST they should have done was take the device OFF the market until further data were collected. Our group plans to move forward by continuing to gather support from Congress for the E-Free Act.

 

The FDA has failed us. We need Congress to step in and order them to revoke approval of the device and take it off the market. Essure is a clear example of conflict of interest, industry ties, and profits before patients.

Rex Johnson
Lake Forest, WA

Rex Johnson was a participant in our November 2015 Workshop. He and his wife, Yanling Yu, are co-founders and board members of the nonprofit group, Washington Advocates for Patient Safety. Its goal is to be the voice of patients and to educate the public on patient safety.  They were invited to be faculty on the AHRQ TeamSTEPPS Program at the University of Washington, where they train medical professionals to improve communications and to work as a team to improve patient safety. 

 

Rex and Yanling are also members of Consumers Union’s Safe Patient Project (SPP).  On February 1-3 this year, they attended a SPP annual summit in Washington, DC (which included a talk by Dr. Zuckerman) as well as a Lobby Day. During the visit to the capitol, they discussed medical safety issues with their Senator, Patty Murray and her staff.  Senator Murray is the highest level Democrat on the Senate HELP (Health, Education, Labor, and Pensions) Committee.

 

Why did you become a patient advocate?

My Father-in-law, Xingxun, was killed by the negligent use of an off-label medication that was contraindicated for his medical conditions. This tragic experience transformed Yanling and I into patient safety advocates.

 

What is your greatest accomplishment as an advocate?

After Xingxun’s death, we found out multiple issues with the doctor who gave the fatal drug.  Based on these concerns we filed a complaint with the state medical board, and they responded stating the doctor’s care met the standard.  I spoke to the Director of the medical board and will never forget her words.  She said, “The law does not require me to tell you anything, so I will not.”  We worked with our state legislators to co-author a bill to improve the transparency of the state medical regulatory agencies in Washington State.  It took us three years to get this bill passed.

 

What are your goals for our new Patient Network?

I have become painfully aware of the staggering magnitude of the health care problem in our country and that there are many other people besides my Father-in-law and family that have been needlessly injured or killed by preventable medical errors. We need to find a way to change our broken medical system.  We need to get many more people involved so that we have enough people power to demand the changes and to stop these unnecessary deaths.

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. 

Essure Problems Facebook Activists

Lobbying at Capitol Hill

SEPTEMBER 15: Here are Essure Problems Facebook activists Angie Firmalino and Amanda Dykeman, implant activist Chandra DeAlessandro, and device researcher guru Madris Tomes with NCHR president Dr. Zuckerman outside the Senate Health Committee office after lobbying for safer medical devices and Ariel Grace’s Law and the Medical Device Guardians Act.

© 2016 by The National Center for Health Research. 

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