Call for action - patient advocacy issue

Lifelines: The Brain Injury Support Group

Hello.

Kimberly here, facilitator of Lifelines. I am writing today to ask for your support with a patient advocacy issue.

During our September meeting, we discussed the brochures distributed by the Brain Aneurysm Foundation (BAF), a national organization based in Boston. The attendees of that meeting approved the letter pasted at the end of this introduction. Please review the letter, as well as one of the brochures mentioned (http://www.bafound.org/info/pubs/BAF_Brain_Aneurysm_Basics.pdf).

If you are in agreement with the letter, I would appreciate a reply email (aikmank@gmail.com) that relays your support and desire for change. I will collect all the responses, send them to the BAF and ask that change be made. This is equivalent to collecting a petition with signatures.

Please feel free to distribute this request to other interested parties. The goal is to collect hundreds of "signatures."

Let's make the world a better place for brain injury survivors!

___________________________

We are the members of Lifelines: The Brain Injury Support Group in Dallas, Texas. Because of the number of brain aneurysm survivors in our group, we also function as the Dallas support group for the Brain Aneurysm Foundation (BAF). We write to you today in order to express our concern about the recent marketing material distributed by the BAF with the hope that the rhetoric may be improved.

As brain injury survivors and caregivers, we are aware there are many types of brain injury, which include brain aneurysm rupture, brain surgery, stroke, motor vehicle accidents, bicycle accidents, falls, gunshot wounds, congenital conditions, etc. Surviving these incidents, which in the majority of cases means triumphing over death, and struggling to restore our quality of life in the aftermath, gives us leave to make the following points:

1. We object to the use of fear of death as a motivator to encourage treatment for unruptured aneurysms.

2. We feel that the interview with Amanda Horan Kennedy is misleading as to reality faced by a brain injury survivor and does not accurately reflect the probable result of brain injury that follows brain surgery.

3. We request that the marketing material also include mention of brain injury and resources available to survivors.

4. We request that the materials also provide guidance as to how people can talk to their doctors and insurance companies in order to obtain an accurate diagnosis; many unruptured aneurysms are left undiagnosed and untreated due to a lack of education in the medical community. In addition, there is a lack of awareness regarding the symptoms of ruptured brain aneurysms that should also be addressed.

We suggest the following changes:

a. Instead of "Save your life" - "Improve the quality of your life"
b. Instead of "40% of all people will die" - "Only 60% will live"
c. Clarify that ruptured brain aneurysms account for 3-5% of all new *hemorrhagic* strokes

We welcome the opportunity to discuss this matter with you. Our facilitator, Kimberly Aikman, may be reached via email at aikmank@gmail.com or by calling 214-289-0286.

Thank you for your consideration.

Sincerely,

Lifelines: The Brain Injury Support Group

Neither Lifelines nor Presbyterian Hospital of Dallas endorse or recommend any method, treatment, or a program for persons with a brain injury. The intent of the group is to provide support and make information available. Attendance in the group is not a substitute for an informed discussion between a patient and his/her health care provider. No endorsement is intended nor implied.