NABTC Presses for More Funds for NIH and for a Restoration of Funding for the Adult Brain Tumor Consortium
April 22, 2009
President Obama and Congress provided a major boost to the National Institutes of Health (NIH) and the biomedical researchers who depend on NIH funding by including in the American Recovery and Reinvestment Act (ARRA), or stimulus package, more than $10 billion for NIH. This funding includes contruction funds for NIH and construction funds for extramural institutions along with money for biomedical research and comparative effectiveness research. Of the $10 billion total, approximately $8.2 billion will be distributed in grants to extramural researchers.
The NABTC applauds this action, which comes after four years of virtually static funding for NIH. During this period of time, research budgets were cut and new projects were slowed or stalled. Although the stimulus package funding halts that trend, there are (more...)
Posted in Action Items, Advocacy Positions, Brain Tumor Action Week, Brain Tumor Research
NABTC Urges Action to End Medicare Waiting Period; Coalition Fighting for Reform Includes 90 Leading Organizations
April 22, 2009
The North American Brain Tumor Coalition joins 90 other leading health care organizations in seeking the elimination of the Medicare Waiting Period for those receiving Social Security Disability benefits. Under the current Medicare rules, individuals must wait two years after they begin to receive Social Security Disability payments before they may receive health care through Medicare. This policy has been in effect since Medicare was expanded in 1972 to provide benefits to the disabled, and year in and year out the policy denies disabled individuals who desperately need health care the ability to receive that care through Medicare for two long years. Tragically, some disabled Americans die while they are waiting for Medicare benefits.
The NABTC has been a strong advocate for elimination of the (more...)
Posted in Action Items, Advocacy Positions, Brain Tumor Action Week
Brain Tumor Care and Cures Act of 2009: An Advocates’ Plan for Enhancing Brain Tumor Treatments
April 22, 2009
The North American Brain Tumor Coalition seeks to advance the Brain Tumor Care and Cures Act, a draft bill that would authorize programs and activities to improve brain tumor treatments. NABTC advocates include individuals with brain tumors, family members and friends of those diagnosed with brain tumors, caregivers, and physicians, nurses, and basic researchers. The experience of these advocates related to brain tumors is broad and deep, and they relied on this experience in drafting the Brain Tumor Care and Cures Act.
The bill includes initiatives that brain tumor advocates believe will accelerate the development of new brain tumor treatments and improve access to care by brain tumor patients. The brain tumor research task is so great that the bill could have been more detailed (more...)
Posted in Action Items, Advocacy Positions, Brain Tumor Action Week, Brain Tumor Research
Brain Tumor Advocacy Packet — An Agenda for Improving Brain Tumor Treatments
April 15, 2009
NABTC members and friends are going to observe Brain Tumor Awareness Month of May 2009 by promoting an aggressive and ambitious agenda for brain tumor research and care.
Advocates are encouraged to contact their elected officials and to ask them to help the brain tumor community advance several important initiatives. The internet and email have transformed your ability to speak to your Senators and Representatives, which means that brain tumor advocates can be as effective at home as they can be in Washington, D.C.
Senators and Representatives generally spend weekends and Congressional recess periods in their home districts and states, which means that there is a ready option of meeting with your elected officials when they are at home. You can also contact your (more...)
Posted in Action Items, Advocacy Positions, Brain Tumor Action Week, Headlines
Brain Tumor Policy Agenda for 2009: Join Us in Fight for Better Brain Tumor Treatments
April 15, 2009
The North American Brain Tumor Coalition will dedicate its activities during May 2009, Brain Tumor Awareness Month, to Congressional action on the Brain Tumor Policy Agenda for 2009.
The time for action is now to improve brain tumor treatments and given those who are diagnosed with brain tumors a chance of a longer and better life. NABTC proposes concrete policy actions to ensure that brain tumor patients suffer no hurdle in receiving Medicare benefits as well as a range of actions that will intensify and reinvigorate the federal brain tumor research effort.
The Brain Tumor Policy Agenda for 2009 is outlined in brief in the attached document. 2009-brain-tumor-policy-agenda
Posted in Action Items, Advocacy Positions, Brain Tumor Action Week
Announcing Brain Tumor Advocacy - May, 2009
March 17, 2009
The North American Brain Tumor Coalition is announcing some expanded ways of participating in Brain Tumor Advocacy. Since May is Brain Tumor Awareness Month, we are urging all interested supporters to join with the Coalition in our advocacy efforts during the entire month. Some members of the Coalition will be in Washington, DC on May 4th to go to the Hill with brain tumor advocacy requests. Many more brain tumor advocates are choosing to be advocates in their own communities by scheduling appointments with their elected officials in their local offices and by conducting their advocacy by phone and email. Come back to this site often to get more information about these advocacy efforts, and how you can participate in your (more...)
Posted in Action Items, Advocacy Positions
ACT NOW to Urge Full Funding of the BT Consortium
January 7, 2009
Brain tumor advocates began the new year by petitioning the National Cancer Institute (NCI) to reconsider a preliminary decision that would slash the funding for the Adult Brain Tumor Consortium by approximately one-half. Advocates urged the NCI Director to reverse his decision, which they believe could threaten the viability and effectiveness of the Consortium. The Phase I and Phase II brain tumor clinical trials group is being asked to meet ambitious research goals — of critical importance to brain tumor patients and researchers — with one-half of the budget originally promised to it.
The North American Brain Tumor Coalition is now shifting its efforts to the United States Congress, asking elected officials to communicate to NCI regarding this funding decision. A diagnosis of (more...)
Posted in Action Items, Advocacy Positions, Brain Tumor Research, Headlines
Medicare Waiting Period Elimination Legislation Highlighted by Coalition
November 23, 2008
A coalition of 75 patient and consumer organizations held a Capitol Hill press conference on November 12, 2008, to press passage of legislation to eliminate the Medicare waiting period. The North American Brain Tumor Coalition is a member of the coalition seeking improvements in Medicare for the disabled.
Legislation sponsored by Representative Gene Green (D-TX) and Senator Jeff Bingaman (D-NM) would eliminate the two-year waiting period for receipt of Medicare benefits for people with life-threatening illnesses and would phase out the waiting period for all others over a ten-year time span. As too many brain tumor patients konw, the period of “waiting” for Medicare benefits can result in foregoing needed health care or can trigger a family’s bankruptcy due to medical (more...)
Posted in Advocacy Positions, General News, Uncategorized
Social Security Administration Announces Compassionate Allowances Initiative
November 23, 2008
On October 27, 2008, Social Security Commissioner Michael J. Astrue announced the national rollout of the Compassionate Allowances initiative. This program is intended to expedite the processing of disability claims for those individuals who obviously meet the Social Security Administration’s standards for disability benefits. The initiative will begin with a list of 50 impairments — 25 rare diseases and 25 cancers. Those individuals who have been diagnosed with these impairments shouid receive decisions about their disability benefits in days instead of the months or years that disability determinations sometimes take.
This initiative is of particular importance to brain tumor patients, because the list of 50 conditions includes astrocytoma (grades III and IV), ependymoblastoma, and glioblastoma multiforme. The full list of 50 conditions is (more...)
Posted in General News
NABTC Urges Action to End the Medicare Waiting Period
September 13, 2008
Contact your Senators and Representatives TODAY to ask them to cosponsor the Ending the Medicare Disability Waiting Period Act (H.R. 154/S. 2102). This important legislation would improve access to health care for many Americans, including individuals with brain tumors. For those with life-threatening conditions, the 24-month waiting period to receive Medicare would be eliminated. The waiting period would be phased out for others, until no American with disabilities would be forced to waiting for Medicare benefits.
The brain tumor community must act to build Congressional support for this legislation.(more...)
Posted in Action Items, Advocacy Positions
