2009 Patient Congress-Healthcare reform
The Brain Tumor Awareness Organization was an exhibitor for the 3rd year at The National Patient Advocate Foundation’s (NPAF) Patient Congress in Washington, DC. The BTAO participates in Patient Congress to represent those we serve and lend the voice of those affected by brain tumors to the dialog on 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.
We are pleased that our representatives have sponsored and/or co-sponsored legislation that will eliminate many barriers for access to care.
To track legislation and their sponsors or co-sponsors, visit
THOMAS.gov and search for the following bills:
Senator Lindsey Graham has co-sponsored
S.391Â and the companion bill in the House is
H.1321Senator Jim Demint has sponsored
S. 1324
Nancy Daveport-Ennis Founder/President of The National Patient Advocate Foundation
The Dinner Symposium updated State Policy Liasons from 46 states as to the issues patients faced in the year since last Patient Congress. The Patient Advocate Foundation releases every year their Patient Data Analysis Report which brings data together reflecting their intake process of calls from patients seeking assistance from each state and which issues they brought to the NPAF sister organization-The Patient Advocate Foundation. The Patient Advocate Foundation provides co-pay relief programs for those dealing with a chronic or life-threatening illness as well as providing case management services to assist patients with access to care issues.
Elizabeth Edwards
We were honored to hear Elizabeth Edwards speak about her experiences as a cancer survivor and her commitment to raising awareness about the issues cancer patients face within the current healthcare system. She graciously signed copies of her book which were provided to each of the attendees at the dinner.
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