If you cannot join the NABTC in Washington, D.C., you can visit your United States Representatives and Senators in their state or district offices. You can also communicate with them by phone or email. If you have never engaged in advocacy with Members of Congress and if you don’t even know the names of your Senators and Representatives, you can easily prepare yourself for advocacy. Visit www.house.gov and www.senate.gov, where you can use you zip code to identify your elected officials and to obtain all of their contact information. You can also be in touch with the Coalition, through info@nabraintumor.org, for additional information.

Position papers outlining the Coalition’s policy priorities are attached. NABTC Advocacy Positions May 2010

The Coalition endorsed the recommendation of the biomedical research community that National Institutes of Health funding be boosted to $35 billion in fiscal year 2011 and outlined specific brain tumor funding priorities that should be funded from that total.

In his statement, Mr. Fay urged a long-term commitment to basic, translational, and clinical research on brain tumors but also reminded the subcommittees of the urgent need for new brain tumor treatments and the necessity to accelerate the development of new therapies as much as possible.

Mr. Fay’s statement to the House and Senate subcommittees is attached. Statement of Joseph Fay to House and Senate LHHS Appropriations Subcommittees April 2010

One week later, on March 30, 2010, President Obama signed into law the Health Care and Education Reconciliation Act, which included a number of health-related financing and revenue changes to the Patient Protection and Affordable Care Act.

With the President’s signature on these two pieces of legislation, the process begins to implement an insurance exchange system, fully operational by 2014, through which uninsured Americans may purchase health insurance. By 2014, there will also be a requirement imposed on employers to provide insurance and on individuals to purchase insurance. There will be some exceptions to these requirements, but the legislation will ultimately expand coverage to an additional 32 million Americans.

Although many provisions of the law will not be fully in place until 2014, several important parts of the law go into effect sooner. Among these are some that will benefit individuals with brain tumors. By the end of June 2010, a temporary national high-risk pool will provide coverage to adults with pre-existing conditions. This temporary program will phase out when the insurance exchange system is fully implemented, but in the meantime it will help individuals who are otherwise unable to obtain insurance coverage.

By the end of September of 2010, certain insurance regulations will be in place. Health plans will be barred from placing lifetime limits on coverage, blocked from rescinding coverage, except in cases of fraud, and prevented from excluding coverage for children who have pre-existing conditions. For some brain tumor patients, the protection against imposition of lifetime limits on coverage will be critical.

By the end of September, covered dependents must be allowed to stay on their parents’ health policies until the age of 26. This provision is meaningful for many young adult survivors of brain tumors, who find themselves uninsurable at the end of college or the termination at age 21 or 22 of their coverage through their parents’ plan.

For individuals with brain tumors who are enrolled in Medicare, there are a number of improvements to the program. Beginning in 2010, the Medicare Part D prescription drug coverage gap will be addressed. Over the next decade, the gap in coverage for prescription drugs for Medicare beneficiaries will be eliminated.

Useful materials about the health reform law, including a timeline for implementation, are available on the Kaiser Family Foundation website at www.kff.org. In addition, the website of the Speaker of the House of Representatives has much information about the new law at http://www.speaker.gov/newsroom/legislation?id=0361.

In addition, the NABTC will continue to post updates about the health reform bill and its implementation on this website.

Join your friends in the brain tumor community in pressing for federal funding for brain tumor research and implementation of health reform to help uninsured brain tumor patients.

To register, please use the form at http://www.nabraintumor.org/registration10.html.

Although there has been a policy for Medicare payment of routine patient care costs incurred in clinical trials since 2000, the policy does not include adequate protections for Medicare beneficiaries enrolled in Medicare Advantage (MA) plans. MA enrollees who participate in trials out of their MA plan have been required to pay out-of-network cost-sharing for the routine patient care costs of trials. Most of these patients, who do not have supplemental insurance, have found those costs unaffordably high and have declined to participate in clinical trials as a result.

In its request for proposals for MA plans and prescription drug plans for 2011, CMS proposes to require plans to reimburse beneficiaries for out-of-network cost-sharing associated with clinical trials. Although this appears to be a minor and technical reimbursement matter, it has had significant impact on Medicare Advantage enrollees who were interested in clinical trials participation.

The NABTC joined with others in sending a letter to CMS applauding its proposal for 2011. We will continue to monitor the bidding process to guarantee that this protection is included in 2011 plans. The letter signed by NABTC is attached. Cancer Leadership Council comments on 2011 call letter

The North American Brain Tumor Coalition has not commented on those procedural matters, but it has once again joined with colleagues in the patient advocacy community to articulate the elements of health reform that are critical for cancer patients and others with serious and life-threatening illnesses.

The NABTC recommends that any bill approved by Congress and signed into law protect against the use of pre-existing condition exclusions by insurance companies, provide patients protection against unreasonable cost-sharing requirements, and assist families and individuals with the purchase of health insurance.

The letter signed by the NABTC and other members of the Cancer Leadership Council urges Congress to approve health reform legislation without delay. The letter signed by the NABTC is attached. CLC Urges Collaborative Action on Health Care Reform February 2010

We’ll be pressing Congress to fund the National Institutes of Health generously, continue a Peer-Reviewed Cancer Research Program at the Department of Defense that supports pediatric brain tumor research, and ensure a strong and coordinated brain tumor research program at the National Cancer Institute and National Institute of Neurological Disorders and Stroke. We also hope to be discussing issues related to the implementation of health reform legislation during our May visits.

To register, please use the form at http://www.nabraintumor.org/registration10.html.

Please return to the website for advocacy materials, which will be posted soon.

The ASTRO plan includes the following recommendations: 1) creating a database for the reporting of linear accelerator- and computed tomography-based medical errors, 2) launching an enhanced practice accreditation program, specifically addressing new, advanced technologies such as IMRT, SBRT, and brachytherapy, 3) expanding educational programs, with special emphasis on quality assurance and safety, 4) working with patient support organizations to develop tools for patients to use in discussions with radiation oncologists, 5) developing a compliance program to ensure that technologies from different manufacturers can safetly transfer information to reduce the chance of a medical error, and 6) providing members’ expertise to policymakers for expanded federal initiatives to help protect patients.

The ASTRO press release describing the six-point patient protection plan is available at http://www.astro.org/PressRoom/NewsReleases/2010NewsReleases/documents/RadiationSafetyPR.pdf.

The release of the plan follows the publication of a series on radiation therapy safety in the New York Times. Two articles on this topic by Walt Bogdanich are available at http://www.nytimes.com/2010/01/24/health/24radiation.html and http://www.nytimes.com/2010/01/27/us/27radiation.html.

The Times also editorialized about the safety of radiation therapy after the two investigative articles published in the paper. The editorial recommended, ” Manufacturers need to develop software that will shut down the linear accelerators before they can deliver extreme amounts of radiation. Medical teams that deliver the radiation must be far better trained than many now are. Surely it should be standard procedure to run a test before the first treatment to be sure the computer is programmed correctly. Once the manage is done to a patient, there is little that can be done to correct it. The Times editorial is available at http://www.nytimes.com/2010/01/27/opinion/27wed3.html.

In its press release announcing its budget proposal, the Department of Health and Human Services HHS) said that the $1 billion increase in NIH funding, to a total of $32.2 billion, will support innovative basic and clinical research projects. According to HHS, “This effort will be guided by NIH’s five areas of exceptional research opportunities: supporting genomics and other high throughput technologies; translating basic science into new and better treatments; reinvogorating the biomedical research community; using science to enable health care reform; and focusing on global health.”

Research advocates praised the Obama Administration proposal while at the same time urging a larger NIH funding increase. The Ad Hoc Group for Medical Research said it “… thanks President Obama for his continued commitment to science and innovation at a time when the nation’s fiscal situation compels difficult decisions. For medical research, his agenda sets off on the right course, as it recognizes that sustaining progress in medical research is essential to the twin national priorities of smarter health care and economic revitalization.” The Ad Hoc Group urges that Congress build on the Obama recommendation, boosting NIH funding to a total of $35 billion for FY 2011.

The HHS budget documents, including the HHS budget in brief and budget justifications for the HHS agencies, are available at http://www.hhs.gov/asrt/ob/docbudget/.

The NIH release stated, “Although the findings do not affect current clinical practice, the researchers said the results may lead to more personalized approaches to treating groups of GBM patients based on their genomic alterations. The study, published Jan. 19, 2010 in Cancer Cell, provides a solid framework for investigation of targeted therapies that may improve the nearly uniformly fatal prognosis of this cancer.”

NIH Director Francis Collins, M.D., PhD., is quoted in the press release: “TCGA is mobilizing the entire cancer community to find new strategies in detecting and treating cancer faster. These findings are just a hint of what we expect to result from the comprehensive data generated by TCGA over the next few years.”

The Cancer Cell article is available at http://www.cell.com/cancer-cell/abstract/S1535-6108(09)00432-2?script=true.

The NIH News Release is available at http://www.nih.gov/news/health/jan2010/nci-19.htm and is attached. NIH News Cancer Genome Atlas Identifies Subtypes of Brain Cancer