2009 Patient Congress-Healthcare reform

Many of the “asks” on behalf of patients affected by a chronic or life-threatening disease are:
End the Medicare Waiting Period and Eliminate Pre-Existing Exclusions. Co-Pays are a major concern as the mounting financial burden is driving many families to bankruptcy in an effort to afford their medical care.
This year, the founder of The Brain Tumor Awareness Organization, Julie Houston, also a State Policy Liaison for NPAF, along with Casey Galloway, Administrative Assistant for The Brain Tumor Awareness Organization and Peggy Baxter-South Carolina Cancer Alliance Board Member, American Cancer Society Volunteer and State Policy Liaison for NPAF met with South Carolina Congressmen and/or their Legislative Assistants to urge healthcare reform in 2009-to be enacted in 2010.

 

Nancy Daveport-Ennis Founder/President of The National Patient Advocate Foundation

Elizabeth Edwards

We appreciate the opportunity to represent South Carolina in this important dialog regarding healthcare reform and want to thank our Representatives for educating us about their part in this important national reform issue.

Representing South Carolinians

We also would like to thank The National Brain Tumor Foundation for conducting their study “No One Can Afford A Brain Tumor” which was presented as part of our exhibit to illustrate on behalf of brain tumor patients, the very issues being considered for reform which could greatly reduce their access to care issues and increase their survival. Thanks also to the many survivors who lent their voice through their works featured in our exhibit: Richard Harvey-poet; David Bailey-musician; Shannon O’Brien-visual artist; Jennifer Gutierrez-former nurse/advocate/support group facilitator; and Samantha Scolamiero-Founder of The BRAIN TRUST list serv. These long term survivors have brought their voices to Washington DC annually during Brain Tumor Action Week to educate Congress about the specific issues and needs that face one upon diagnosis with a brain tumor.

Your voices were heard by many in attendance at Patient Congress this year.

Thank you National Patient Advocate Foundation for all your hard work and for empowering Patients and Advocates to impact change!

The National Patient Advocate Foundation

View more pictures from The 10th Annual Patient Congress

Our license plate project

HB 683 was signed into law today thanks to Jennifer Gutierrez who introduced this initiative to Senator Dempsey and was carried forth by The Missouri Legislature to the Governor’s Desk today.

Jennifer Gutierrez-Missouri Affiliate

What began as a dream to provide patients needed funding in the State of Missouri, became a belated birthday wish come true for Jennifer Gutierrez, a brain stem glioma survivor. Today is a historical moment for all brain tumor Warriors and families of Brain Tumor Angels as Missouri residents have the opportunity to strengthen the voice of those affected by brain tumors.

As the first state to enact into law this license plate featuring a grey ribbon which is the universal symbol for brain tumor awareness, and “Brain Tumor Awareness.Org” which provides a website of resources to ease the navigation process for brain tumor patients, it is the hope of this President that an affiliate from each of the remaining 49 states will step up to introduce this initiative in their state. Funds generated by the purchase of these license plates are dedicated to patient assistance funds for non-medical needs as described in our application process.The financial devastation that befalls families faced with a brain tumor diagnosis is overwhelming and this public support of awareness can change lives.

It is the courage and commitment that is demonstrated by survivors like Jennifer Gutierrez that bring this awareness to decision makers who can facilitate change, improve the quality of lives of survivors and assist in a grassroots movement to increase survival.

On behalf of the Board and the Founders of The Brain Tumor Awareness Organization, we are grateful to Jennifer Gutierrez, Senator Dempsey and his staff, The Missouri Legislature and Governor Jay Nixon for providing the Nation with an initiative worth duplicating state by state.

Thank you Missouri Residents for uniting to make this initiative a success in honor of the many in the fight for survival of this dreaded disease. Please know that gaining the 200 supporters for this license plate in the first year is a great achievement and one that must continue year after year to sustain the awareness and funding made available by its presence in your community. Share this blog entry and the website where a plate registration can begin!

It is also worth noting that when this bill was signed into law, July 1st, 2009, it is seven years from the date of co-founder Keith Houston’s 1st brain tumor resection and his son’s birthday. We (the Founders) are especially grateful to share this momentous occasion with the reason that it all started-a brain tumor diagnosis and the need for awareness.