» Advocacy

Patient Advocate Foundation Co-Pay Relief Program

jenn.gutierrez — Tue, 25 May 2010 18:25:46 +0000

The National Patient Advocate Foundation has an amazing co-pay relief program benefiting not only malignant brain tumors, but 18 other life threatening or chronic diseases. This is a great hidden resource for all of us battling this horrid disease.
This program is set up unlike other programs I have seen before. Each disease has its separate fund and each opens on the first of the month. The fund closes when all the funds have been allocated for that month. The application will open back up again on the first of the following month. The initial application asks a few simple questions to make sure qualify for the fund you are applying for. A paper application will then be mailed to your home for you and your physician to fill out.
I can only speak for how the malignant program runs, but basically it is set up as a reimbursement plan. PAF obtains a 12 month history from your pharmacy and will reimburse you on your out of pocket expenses. Your allotment of money is good for 12 month or until you allotment of funds is depleted.
For more information, or to apply for the program, please visit http://copays.org/

Contact Your Representative to Co-Sponsor The Brain Tumor Awareness Resolution

BTAO — Mon, 24 May 2010 11:04:27 +0000

Representatives Speier, Schakowsky, Sestak, and Castle will be introducing the Brain Tumor Awareness Resolution soon, but they would like to do so with 50 original cosponsors.

During Brain Tumor Action Week, advocates from each state met with their Representatives and asked for original co-sponsors for this resolution.
Now we need your assistance to increase the voice on the Hill to have May declared as Brain Tumor Awareness Month. This will need sponsorship in the Senate for it to become law and we will update you as to its progress.
Please visit http://www.house.gov to locate your Representative’s office, ask to speak to their health legislative assistant and request that they co-sponsor the Resolution.
They can contact The Brain Tumor Awareness Organization for more information at staff@braintumorawareness.org

Brain Tumor Action Week 2010

BTAO — Wed, 24 Mar 2010 00:18:35 +0000

Brain Tumor Action Week is May 1-7, 2010 where advocates from across the country meet and discuss with decision makers the issues that brain tumor patients face. Annually, members of The North American Brain Tumor Coalition, a network of nonprofit organizations in the United States and Canada assemble in Washington, DC and invite brain tumor advocates to join them in meeting with their legislators to share their story, present their “asks” and further the momentum to reduce the impact of brain tumors.

The “asks” are increased research funding and continue the Peer-Reviewed Cancer Research Program at the Department of Defense that supports pediatric brain tumor research.

Register for Brain Tumor Action Week in Washington, DC or set up appointments to meet your legislators in their home offices and visit The North American Brain Tumor Coalition website and download the papers to put in your leave behind packet.

Brain Tumor Action Week events at area cancer centers can include setting up an information table, hosting a brain tumor vigil to remember all those affected by brain tumors and encouraging the donation of hats to join the National or State “Hidden Under Our Hats” display. Check back for more information to be posted here and on our website.

Health Care Reform Passes

BTAO — Tue, 23 Mar 2010 04:23:25 +0000

The House voted to pass Health Care Reform last evening making it the most historic reform to have taken place in decades. The focus of Congress on how to reform health care and assure Americans an affordable insurance product, especially those that are uninsured, underinsured or that have been denied coverage due to pre-existing exclusions or age (non-dependent children over age 18 but still in school) has been one of commitment.

Read more about this historic legislation at the White House Blog.

This is What Change Looks Like- Video Announcement by President Obama following the House Vote.

Read details of House Vote, Reconciliation Bill and more at The National Patient Advocate Foundation website.

2010 South Carolina Cancer Report Card

BTAO — Fri, 26 Feb 2010 04:24:05 +0000

The release of The South Carolina Cancer Report Card shares brain incidence data reflecting the additional registry of benign brain tumors which began in 2006. This inclusion moves South Carolina to be able to participate in The Central Brain Tumor Registry of the United States, an effort to gather more accurate data regarding brain tumor incidence.

The Central Brain Tumor Registry of the United States, CBTRUS, is a not-for-profit corporation committed to providing a resource for gathering and disseminating current epidemiologic data on all primary brain tumors, benign and malignant, for the purposes of accurately describing their incidence and survival patterns, evaluating diagnosis and treatment, facilitating etiologic studies, establishing awareness of the disease, and ultimately, for the prevention of all brain tumors.

The Bipartisan Meeting on Health Reform

BTAO — Thu, 25 Feb 2010 05:07:17 +0000

As our decision makers continue to discuss the most important issue concerning American citizens, healthcare reform, we can understand more in depth their individual concerns. Healthcare concerns us all.

This writer encourages you to view the Bipartisan Meeting on Health Reform and learn more about what influences the current costs of healthcare and limited market choices for those suffering from pre-existing, chronic or terminal illnesses.

You can download the hearing for your portable device:
Bipartisan Meeting on Health Reform Pt. 1
Bipartisan Meeting on Health Reform Pt. 2
Bipartisan Meeting on Health Reform Pt. 3
Bipartisan Meeting on Health Reform Pt. 4
Bipartisan Meeting on Health Reform Pt. 5

As citizens, it is our duty to actively participate in this discussion by understanding the bill, discussing specifics with our decision makers and supporting the efforts of our Representatives as they embrace reform.

America can’t wait for universal and affordable coverage, the elimination of pre-existing condition exclusions, the elimination of annual and lifetime out-of-pocket caps and halt rescission of insurance policies.

To learn how you can get involved, visit The National Patient Advocate Foundation’s website or read their position papers.

Support a Stamp to benefit Brain Research

BTAO — Thu, 28 Jan 2010 02:02:14 +0000

In 2002, Keith Houston was diagnosed with a Grade 3 malignant brain tumor at age 36. After receiving treatment, he and his wife Julie took their first trip to Washington, DC to advocate with The North American Brain Tumor Coalition during Brain Tumor Action Week. Julie, a former postal employee began her campaign then for a semi-postal stamp for brain tumors. She began by contacting an internationally renowned artist, George Pocheptsov to design the stamp. George, who lost his father to a brain tumor when he was only a toddler, has donated his paintings to benefit charities over the years. Though George’s art is highly detailed and he may not be selected to design such a stamp, he is the Brain Tumor Awareness Organization Ambassador and supports the mission and programs through his paintings.

Since the Citizen’s Stamp Advisory Committee had previously nominated for consideration a Silver Ribbon Stamp proposed by the Silver Ribbon Coalition, which represents all brain diseases, disorders and injuries, there was an opportunity for collaboration to bring both the brain tumor community and the Silver Ribbon Coalition together as one voice. The Breast Cancer Research Stamp had generated $52 million in 9 years and greatly increased research funding at the National Institutes of Health (NIH), The National Cancer Institute (NCI) and The Department of Defense (DOD). Julie approached members at each one of these institutes to learn how multiple research projects were benefiting various brain disorders, dysfunctions, diseases and injuries. Upon identifying the advances in these areas of research and the impact that traumatic brain injuries are having on our Veterans at war, she recognized that the numbers were significant to lobby The Citizens’ Stamp Advisory Committee (CSAC) and Congress for a semi-postal stamp, supported by all brain organizations.

A recent conference revealed that the success of the Breast Cancer Research Stamp was a direct result of the numbers of supporters, the organized campaign, the purchasing power and the increased awareness about the significant funding the stamp provided. It is recognized by the CSAC that to issue a stamp, it must be supported by such a grassroots effort.

Therefore, we are asking that you support the campaign for a semi-postal stamp to benefit brain research and invite anyone you know in support of this effort to sign a petition or send a letter to the CSAC.

Together, we can be heard.

My special thanks to all those individuals and organizations that provided their 800 signatures in 2004 and especially to the Silver Ribbon Coalition, who pioneered this effort early on. Thanks to their impact, this stamp can become a reality with all efforts coming together for one cause.

Click here to learn more and submit your letter.

Begin in 2010..Putting the pieces together

BTAO — Wed, 27 Jan 2010 12:54:00 +0000

Many issues continue into a new year but as it begins, it is a time to assess your overall health-physical, emotional, spiritual and financial. To assist with this, we created a financial planning tips sheet . This first set of discussion sheets in the series addresses basic management skills:

Sorting and organizing your mail
Setting up an electronic filing system
Accessing computer program tutorials
Employing an erasable china marker for easy labeling of items
Filing for Homestead Exemption to reduce property tax liability
Filing your taxes-getting assistance from a United Way Agency or through www.irs.gov
2010 Medicare Advantage open enrollment period and criteria
Self-advocacy tools available on our website

Some simple organization steps can result in supportive measures that reduce stress and provide clear communications about the processes you are engaged in.

Updates on Health Care Reform

BTAO — Mon, 11 Jan 2010 19:47:45 +0000

Christmas Eve brought sweeping reform in the Senate when 60 votes were cast to pass legislation to provide health care coverage for Americans.
Now that the Holidays have passed, the House and the Senate will conference on the legislation and continue the hard work.
To learn more about where this effort is currently, visit The National Patient Advocate Foundation’s website.

Visit THOMAS.GOV to learn about recent action on:
H.R. 3590-The Patient Protection and Affordable Care Act
H.R. 3962-Affordable Health Care for America Act

From the Hills of Hincapie to the Land Of Lance-Year 2

Keith Houston — Mon, 09 Nov 2009 00:12:10 +0000

Well we are back from the bicycle ride to Austin Texas with the Palmetto Peloton’s Challenge to Conquer Cancer team. I once again went as their Medic.
As a team we have raised over $200,000.00 for cancer research both here locally and for the Lance Armstrong Foundation.

The ride is a relay from Greenville SC. To Austin Tx. In which there are teams that ride 24 hours a day until we get to Austin where we all participate in the LIVESTRONG Challenge.

Convoy to Austin

This is a fantastic and heartwarming experience, it is incredible to see and be with all the people whose lives have been affected by this horrible and life-altering disease.

Our C3 Warriors

The best part for me is to not only see Lance but to see the changes in people’s lives as they are forever touched by what they see and the stories they hear. I know for me how great it felt to hear people encouraging me as I rode with them or more like when they passed me and at one point even help push me up a long hill, it is a feeling that will be with me forever, and yes it is kind of cool to see Lance.

The C3 Survivors finshing the 5K