NBTS Headquarters Blog

Dental X-rays and Meningioma

NBTS Community Admin — Mon, 16 Apr 2012 15:39:00 GMT

Past exposure to dental X-rays, when radiation exposure was greater than it is today, may be associated with an increased risk of developing a meningioma, according to a study published online on April10 in the journal Cancer.

This does not mean people should not be getting dental X-rays. However, what it does suggest is that dental X-rays should be used when clinically required and on a schedule that is reasonably spread out and not used just because they can be.

This epidemiological study, headed by Elizabeth Claus, MD, PhD (Brigham and Women's Hospital in Boston, and Yale University), showed that the ionizing radiation of dental X-rays increased the lifetime risk for developing meningioma. The use of bitewing (film inside the mouth) exams increased the risk by 1.4 to 1.9 times over controls. Increased risk was also linked to panorex exams (taken outside of the mouth and show all of the teeth in one film). The earlier the age of exposure and frequency the higher the risk, with as high as almost five times increased risk in patients reporting having had received a panorex when they were 10 years old or younger.

Though this type of epidemiological data has limitations, particularly around recall biases, this group of top brain tumor epidemiologists significantly controlled for these limitations through their methodology. For example, instead of relying on people to return survey questionnaires, researchers had trained interviewers collect responses from study participants. From the biological point of view there is a clear known mechanism that is at play: the carcinogenic effect of ionizing radiation, as in dental X-rays, that damages DNA and causes mutations is without dispute.

The study points out that dental X-rays, though radiation exposure is less today than in the past, remain the most common artificial exposure source of ionizing radiation.

Meningioma arises from the meninges, the outer three layers of the tissue between the brain and the skull. The meninges cover and protect the brain, as well as the spinal cord (where ~10% of meningiomas arise). It is actually the most common primary brain tumor, representing about 35% of all brain/CNS tumors with an incidence approaching 18,000 cases a year. About 85% are curable when a total resection is performed. There are three grades of meningiomas: Grade I (benign meningioma); Grade II (atypical meningioma); and Grade III (malignant or anaplastic meningioma).

The stronger the voice, the better the outcome

NBTS Community Admin — Tue, 10 Apr 2012 15:38:00 GMT

Everyday, Members of Congress must be prepared to make decisions on any number of issues. They and their staff wade through piles information and statistics, all with the goal of making the most informed decision possible. Sometimes, their votes will be popular, sometimes they won’t. But one thing is certain – they are there to represent YOU. That’s their job – to fight for your best interests as a constituent when policies are considered that will have an impact in your life. That’s why it is so important that they hear from voters on the issues that matter most to them. Statistics and reports are informative, but nothing drives an issue home like a personal story from a constituent.

Last year, brain tumor advocates went to Capitol Hill together as a unified force fighting brain tumors through public policy. They met with their Members of Congress and their staff, and they told them how their lives were touched by brain tumors. They explained why it is so important that patients have the care they need and why they are counting on the research supported by the National Institutes of Health to develop new treatments and find a cure. It was a powerful and inspiring day.

And we’re ready to do it again – this time stronger and larger than ever before! On May 7 and 8, advocates will once again come to Washington, DC from across the country. There are some new and exciting changes this year: a new name, Head to the Hill, and a new co-sponsor, Accelerate Brain Cancer Cure. But the one thing that hasn’t changed is the energy and passion of the volunteer advocates who will be joining us. We hope that you will be one of those advocates! No previous experience is necessary. We’ll provide a full training and we’ll set up your meetings for you. All you need is your voice.

BethAnn Telford, one of our incredible brain tumor advocates, put it best during a recent interview on her experience in Washington DC last year:

“They listened to what we had to say. They listened to the sad part and the happy part. They saw the tears and the smiles. They saw the survivor and they saw the loss…. I believe if we could get more people up there – the stronger the voice, the better the outcome.”

Supreme Court Wrap-up

NBTS Community Admin — Thu, 29 Mar 2012 17:44:00 GMT

This week, the Supreme Court heard three days’ worth of oral arguments over the Affordable Care Act, the health care reform law that passed in 2010. The long-awaited hearing was an almost certainty for this highly debated legislation from the day President Obama signed it into law. Now it’s up to the justices and nothing is certain.

The next step in the process is that the Supreme Court justices will meet behind closed doors tomorrow to discuss the week’s oral arguments. They will vote amongst themselves on each issue and the senior justices will decide who will write the opinion on each side. This begins a three-month process of back and forth between the justices that only they and their law clerks will have knowledge of.

As we’ve outlined on this blog over the past three days, there are several issues that the justices must decide on. They will determine (1) whether the government has the constitutional authority to require that everyone carry health insurance coverage, as the ACA’s individual mandate does; (2) in the case that individual mandate is struck down, whether it is severable from the rest of the law, meaning that all or part of the ACA will remain in place without the individual mandate provision, or if the entire law must be struck down as a result; and (3) whether the Medicaid expansion in the law is a form of coercion.

We’ve learned that the Court will issue its decision in June, at the end of its current term. Until then, the fate of the ACA remains unclear. However, as long as the ACA is the law of the land, the National Brain Tumor Society will continue our work to ensure that it is implemented in a way that works for the brain tumor community.

Brain tumor patients are intimately familiar with the strengths and weaknesses of our health care system. They have much to gain from the patient protections that are included in this law, including the ban on pre-existing condition exclusions, the prohibition of lifetime and annual caps on insurance coverage, and the protections for patients participating in clinical trials. We’ll keep you informed of the outcome of this decision, its implications, and our ongoing work to ensure that brain tumor patients have access to the care that they need to keep fighting.

Before the Court: Expanding Medicaid

NBTS Community Admin — Wed, 28 Mar 2012 16:28:00 GMT

Today, the Supreme Court concludes its review of the Affordable Care Act (ACA). Under the microscope this afternoon is the ACA’s Medicaid expansion, which requires that states offer the program to all non-elderly individuals earning up to 133% of the Federal Poverty Level (FPL), or about $30,700 per year for a family of four, beginning in 2014. To understand how this provision and the Court’s ruling on it affect the brain tumor community, we must first understand the program itself and the arguments for and against its expansion.

Enacted in 1965, Medicaid is a public insurance program for low-income people and people with disabilities. Each state administers its own Medicaid program with partial funding from the federal government. The federal government sets guidelines, within which each state designs their own program. As a result, Medicaid eligibility and design differs greatly from state to state.

The Affordable Care Act utilizes this existing program as part of its effort to extend insurance coverage to most Americans. By requiring that states offer Medicaid to all non-elderly individuals earning up to 133% FPL, the law expands coverage to 17 million more people, according to the nonpartisan Congressional Budget Office. Much of the financial burden of this expansion falls on the federal government, which pays the full cost of all newly eligible enrollees for the first three years, after which the states pick up 5% of the tab until 2017. In 2019 and beyond, the states are responsible for 10% of the cost of care for the expansion’s enrollees.

The 26 states that are challenging the ACA in this case argue that this expansion is a form of coercion because the federal government is requiring them to cover more people, and to pay for part of that expansion. They believe that this goes beyond the limit of what the federal government can force states to do in order to receive federal funds. Supporters of the law and the Obama administration argue that because the federal government is paying for the majority of the expansion and because states can drop out of the Medicaid program at any time, the expansion cannot be characterized as coercive.

As with each of the issues discussed over these three days, we won’t know the final outcome until the Court rules in June. But we do know this – many brain tumor patients struggle to access affordable health care services and insurance coverage. This provision would provide more people in the brain tumor community with the option to enroll in a program that is already successfully providing health care to millions of Americans, including approximately 29 million children. Whatever the outcome, we will continue to fight for more affordable and accessible health care options for the brain tumor community.

Check back tomorrow for a final wrap-up of the Supreme Court hearing on the Affordable Care Act.

Before the Court: Individual Mandate

NBTS Community Admin — Tue, 27 Mar 2012 15:28:00 GMT

Today promises to be the most heated of the three days of oral arguments in the Supreme Court’s case regarding the Affordable Care Act (ACA). Today’s focus is on the constitutionality of the individual mandate. This provision has sparked heated debate on issues of freedom, choice, access, and affordability. In the media coverage, you’ll hear discussions of regulation, commerce, and the reach of government. But just what is the individual mandate; why is it so contentious; and why should the brain tumor community care?

The individual mandate in this case refers to the requirement in the ACA that all people obtain health insurance coverage or pay a penalty. With the exception of some religious or affordability exemptions, most individuals (not already covered by their employer sponsored health insurance plan) would be required to purchase coverage by 2014.

Proponents argue that, without this requirement, healthier individuals will not purchase insurance until they need to use it, leaving a sicker and, therefore, more expensive pool of covered individuals. Insurance companies also argue that this is a necessary protection, as the law bans exclusions for pre-existing conditions, requiring that insurers sell coverage to anyone who wants to purchase it, regardless of their health status. If they must sell to anyone, they argue that risk and cost must be spread widely by requiring everyone to have coverage. On the other hand, opponents argue that this is an infringement on personal freedom and that Congress does not have the constitutional authority to require the purchase of a good or service.

Now, the Supreme Court must decide whether this provision is constitutional and, if it isn’t, whether it alone can be removed from the law, leaving the other provisions in place, or if the entire law must therefore be struck down. We’ll leave the arguments and analysis up to the attorneys and pundits for now. But, as the largest brain tumor organization in the country, our job is to advocate for you. Facing the most expensive cancer to treat, brain tumor patients have been denied coverage for their pre-existing conditions, they have easily reached lifetime and annual caps on their coverage, and they have struggled to find affordable, accessible health care. Whichever way the court rules in June, we will fight for critical protections for the brain tumor community.

Tomorrow, watch for our blog on the final ACA-related topic before the Supreme Court – Medicaid.

Before the Court: Access to Care for the Brain Tumor Community

NBTS Community Admin — Mon, 26 Mar 2012 15:46:00 GMT

It’s difficult to turn on the television or open a newspaper these days without hearing something about the US Supreme Court’s activities regarding the Affordable Care Act. In fact, the Affordable Care Act has been a consistent part of the national dialogue for a while now. We know that it’s a hot-button topic politically, but what does it really mean for the brain tumor community? This week, we will cut through the message points and bring you information on the law itself, break down the issues that are being challenged, and highlight the provisions that matter to the brain tumor community.

The Patient Protection and Affordable Care Act, commonly known as the ACA or the health reform law, was signed into law by President Obama on March 23, 2010 after a long debate in Congress. While there are strong and differing opinions on certain aspects of the law (which we’ll post more about this week), there are provisions in place now and more set to take effect over the next few years if the law is upheld by the court that will directly impact the brain tumor community. Here are some of the highlights:

• Ban on pre-existing condition exclusions
In the past, insurance companies in many states could refuse to sell health insurance coverage to a person with a history of a medical condition, known as a pre-existing condition. As part of the ACA, this practice is not allowed for children and is scheduled to protect consumers of all ages beginning in 2014.

• Ban on lifetime caps
Insurance companies can no longer place a limit on the amount of coverage an individual can receive in a lifetime. In addition, annual limits on coverage are being phased out until they are completely banned in 2014. This is a particularly important provision because brain cancer is one of the most expensive cancers to treat.

• Insurance coverage expansions
Beginning in 2014, Medicaid will cover adults up to 133% of the federal poverty level (FPL) or about $15,000 per year for a single person. Individuals and families with incomes between 133% and 400% FPL will receive assistance in the form of tax credits to purchase coverage.

• Young adult coverage
Under the law, children up to age 26 can remain on their parents’ insurance plans.
• Ensuring coverage for participants in clinical trials

Beginning in 2014, insurers will be prohibited from dropping or limiting insurance coverage if a consumer chooses to participate in a clinical trial and they may not deny or limit the coverage of routine patient costs for items or services furnished in connection with participation in the approved clinical trial. Access to approved clinical trials is critical for the brain tumor community and while insurance does not cover the specific investigative therapy, coverage of services related to clinical trials is essential for patient participation and the advancement of research.

Tomorrow, the court will hear arguments regarding the individual mandate. We’ll be back to discuss this provision, the arguments for and against it, and what it could mean for brain tumor patients.

NBTS involved in "Bridge Project" to Attack Most Lethal Forms of Cancer

NBTS Community Admin — Tue, 06 Mar 2012 15:47:00 GMT

Today, the David H. Koch Institute for Integrative Cancer Research at MIT and Dana-Farber/Harvard Cancer Center (DF/HCC) announced that the Bridge Project–an unprecedented clinical research collaboration between MIT and DF/HCC–has awarded grants to four interdisciplinary teams, including one that will focus on Glioblastoma Multiforme.

National Brain Tumor Society is excited to contribute to funding a specific systems biology-based project in brain tumor research. In addition to providing funding, NBTS was involved in the high-level review process by the Bridge Project Review Committee. NBTS’s Chief Scientific Officer, David R. Hurwitz, PhD, participated in the review of the final oral presentations by Koch and Dana-Farber experts. In addition, NBTS vetted the supported brain tumor research project through its Scientific Advisory Council.

Read more about the project here.

The President's budget and brain tumor research

NBTS Community Admin — Tue, 21 Feb 2012 19:07:00 GMT

Last week, President Obama released his federal budget proposal for fiscal year 2013. While this document does not by itself dictate policy, it outlines the President’s priority areas and lays the groundwork for the budget debate to come.

Like many in the brain tumor and cancer communities, we were left scratching our heads after reading the proposal. The President has talked the talk when it comes to our priority issues. In 2009, he made a commitment to finding a cure for cancer in our lifetime during the State of the Union address. And just a few weeks ago, he again used the State of the Union to show support, touting the advances that federally funded research is making in the search for a cure.

After the National Institutes of Health (NIH) and the National Cancer Institute (NCI) both received an increase in funding last December - thanks to your advocacy - we had reason to be hopeful that we’d see continued progress this year.

But with this new budget proposal, the Obama administration is showing that they aren’t ready to walk the walk. The FY13 budget proposal keeps NIH at 2012 funding levels and cuts funding for NCI, which could prove detrimental to current progress toward new treatments and, ultimately, a cure.

We know that times are tough and but brain tumor patients and caregivers face a life-threatening disease. Cutting research funding in one year can derail progress for many years. As the federal budget is squeezed tighter, a growing number of interests will clamor to be heard by decision-makers in Washington, DC. We can’t let our voices get lost in the din. We need to rise above the noise, louder than ever, and let the President and Members of Congress know that a cure can’t wait.

Key Discovery in Pediatric Brain Tumors

NBTS Community Admin — Thu, 02 Feb 2012 15:23:00 GMT

Researchers at the St. Jude Children’s Research Hospital and the Washington University Pediatric Cancer Genome Project have linked gene mutations not previously tied to cancer to the rare but deadly brain tumor diffuse intrinsic pontine glioma (DIPG). DIPG accounts for 10% to 15% of pediatric tumors of the brain and central nervous system. It aggressively attacks the brainstem and kills more than 90% of its victims within two years.

“We are hopeful that identifying these mutations will lead us to new selective therapeutic targets, which are particularly important since this tumor cannot be treated surgically and still lacks effective therapies,” Suzanne Baker, PhD, corresponding author of the January 29 paper in Nature Genetics and co-leader of the St. Jude Neurology and Brain Tumor Program, said in a statement. She holds the Sydney Schlobohm Chair of Research funded by the National Brain Tumor Society and is a member of the NBTS Scientific Advisory Council.

Dr. Baker and colleagues, in research partially funded by the NBTS, discovered that specific mutations in the HRF3A and HIST1H3B genes existed in almost 80% of the DIPG tumors they studied. These gene mutations also were present in pediatric glioblastoma tumors they studied, but not in other tumor types.

These genes encode histone proteins that organize the structure of DNA in cells and regulate how genes are expressed. In the pediatric tumor cells, their mutation is thought to interfere with these functions. The researchers are now trying to determine how the mutations are involved in development of these pediatric tumors.

The Pediatric Cancer Genome Project is an ambitious three-year project to sequence the normal and cancer genomes of 600 children with poorly understood, aggressive pediatric cancers, with the goal of finding new tools to diagnose, treat, or prevent diseases.

‘Unequivocal Evidence’ on Oligodendroglioma

NBTS Community Admin — Fri, 27 Jan 2012 19:17:00 GMT

A re-analysis of clinical trial data shows that a combination of radiation and chemotherapy can double median survival time for some patients with a rare brain tumor, oligodendroglioma—from 7.3 to 14.7 years.

The affected patients are ones whose tumor has sections of chromosomes 1 and 19 deleted.
Principal Investigator Gregory Cairncross, MD, of the University of Calgary in Canada, says the re-analysis gives us “unequivocal evidence that the chromosomal structure of 1p and 19q co-deletion can be used as a marker to determine which patients will benefit from combined chemotherapy and radiation.” Dr. Cairncross has been an active advisor to the National Brain Tumor Society for several years.

An extra seven years would provide valuable family time for brain tumor patients. Moreover, such an increase in survival might be just enough time for researchers to develop a new therapy that could provide more time—or possibly a cure.

In the clinical trial, 286 patients with aggressive oligodendrogliomas received either radiotherapy alone or radiotherapy plus PCV chemotherapy (procarbazine, CCNU[lomustine], and vincristine). In the first analysis (2006), when patients had been followed for three years, survival time amounted to 8.7 years for patients with the 1p19q deletion and 2.7 years for patients without the deletion.

In the re-analysis, after patients have now been followed more than 11 years, patients whose tumor has the deletion who received the combination treatment had overall survival times of 14.7 years compared to 7.3 years for the patients whose tumor did not have the co-deletion.

This news highlights the importance of Phase III clinical trials to produce actionable results. It also highlights the importance of tumor tissue collection and analysis for potential use in personalized medicine.

State of the Union

NBTS Community Admin — Thu, 26 Jan 2012 18:33:00 GMT

Tuesday night, President Obama delivered the State of the Union address. This annual speech in front of a joint session of Congress provides an opportunity for the President to lay out key national priorities for the coming year. Members of the brain tumor community connected on Twitter as we watched, eager to see a strong commitment from the President on our top issues.

As many expected, the President focused primarily on jobs and the economy. While we didn’t see a strong emphasis on our key issues, we were excited by and appreciative of the nod to advances in cancer research. Increased funding for cancer research is a major policy priority for our advocates.

In these difficult times, there are so many issues vying for the nation’s attention. By uniting our voices, we can ensure that policies impacting brain tumor patients and caregivers are given the consideration and support that they need and deserve. We are making great strides and, with the support of policymakers in Washington, DC, we will continue fight for more research, better treatments, and improved health care until a cure is found.

Will you help us draw attention to these critical issues? Your voice and your story can make a difference. Become an advocate today. Let’s make 2012 the year to fight brain tumors.

Battling Complexity

NBTS Community Admin — Tue, 03 Jan 2012 18:00:00 GMT

(Today's blog comes from David R. Hurwitz, PhD, the Richard B. Ross Chief Scientifc Officer of the National Brain Tumor Society).

"Brain tumors are just about as complex as biology gets: many types and subtypes, intricate aberrant and interacting signal transduction and biochemical pathways, evolving genomic mutations, phenotypic plasticity, cellular heterogeneity, and bidirectional interactions with the microenvironment that support tumor growth and resistance to therapies. A recent article by Jonah Lehrer in Wired discusses the limitations and failures of reductionist research to yield effective and safe new therapies for diseases that involve even what has previously been considered very direct and straightforward biology. An example he discusses is the stunning Phase III failure of torcetrapib to reduce heart disease (it actually increased heart failure and mortality) by tweaking the cholesterol pathway in what seemed an obvious approach emphasizes that limitation. The biology was simply more complex than thought.

In light of the yet already known biological complexity involved in such brain tumors as glioblastoma, how likely does it seem that new effective therapies that inhibit individual or multiple targets will be developed without utilizing systems biology research approaches that embrace that complexity?"

Read the full article here.

An Exercise in Meditation

NBTS Community Admin — Mon, 02 Jan 2012 19:56:00 GMT

If you haven't decided on a New Year's Resolution, here is something to try - mindfulness meditation.

Everyday life is full of stress and if you are a part of the brain tumor community, there can be added stress and limitations around what you can do to alleviate it. Mindfulness meditation is an an easy and free coping strategy.

The National Center for Complementary and Alternative Medicine is a resource to help you start your mindfulness meditation. All that it requires is an open-mind and can-do attitude.

Let’s begin, make sure you have a 30-40 minutes on that can be as distraction-free as possible. These tips are taken from National Center for Complementary and Alternative Medicine’s Meditation Overview.

1. Find a quiet space - this generally makes it easier to focus and relax. This can be outside in the sunshine or on the floor in your closet, wherever you need to be for relative silence and fewer potential distractions.

2. A comfortable position - this can be sitting, lying down, standing or walking. Pick something that will remain comfortable.

3. A focus of attention - pick a quote that you like or a song lyric, visualize the sun warming you, think about a memory that makes you happy and calms you. It does not matter what you choose to focus; all that matters is that you have focus. Sometimes feelings arise and you can choose to focus on those, but remember your focus.

4. Finally, remember to have an open-mind and can do attitude. There is no wrong way to meditate and your experience is individualized and for your own wellness only.

Start slowly and try to build up to a full half hour. Try not to be discouraged if you struggle, keep at it. Spend 30 minutes investing in yourself and your feelings this week.

Let us know how you do by posting a comment.

Resolutions

Community Admin — Tue, 27 Dec 2011 16:08:00 GMT

It’s almost time to say goodbye to 2011 and hello to 2012! Each year, I end up waiting until the last minute and quickly make a New Year's resolution in my mind as the ball is dropping. They change slightly each year, but they tend to share a similar theme. Like most of you, it was probably to visit the gym more often or read more books. This year, while you are waiting for the ball to drop, here are some fun facts you can share with those around you.

The first New York ball was 700 pounds and 5 feet in diameter. The ball was made from wood and iron.
The modern ball is made from Waterford Crystal and weighs over 1,000 pounds. There are over 9,000 LED lights, but uses hardly any energy. The ball begins to drop at 11:59 and completes the journey exactly at midnight to ring in the New Year.

What are your New Years resolutions? Post a comment!

Picture credit: blog.light.innovations.com

The War on Cancer

Community Admin — Fri, 23 Dec 2011 18:03:00 GMT

On December 23, 1971, President Richard Nixon signed the National Cancer Act into law, officially declaring “War on Cancer.” Nixon declared, “I hope in the years ahead we will look back on this action today as the most significant action taken during my administration.”

The historic legislation supported the National Cancer Institute research programs and launched the United States’ clinical trials programs, among other things. As a result of the past 40 years of research, millions of people with cancer have benefitted from better therapies and increased knowledge of the disease. Since 1990, cancer mortality rates have declined steadily.

But that progress has not translated to brain tumors. Brain tumors are highly complex and able to adapt to and resist treatment. In fact, only one new treatment has been approved in the last 30 years. And brain tumors remain the most devastating of all the cancers, a fact that thousands of families know all too well. But the last 40 years of research has provided vital information that can be used to make a change.

“Recent advances in understanding cancer at the molecular level have set the stage for a new era of cancer medicine, in which cancer patients will be treated based on their molecular profile,” according to the American Association for Cancer Research’s Cancer Progress Report 2011. “Hard-fought progress over the past 40 years by the entire cancer research community…now provides unprecedented opportunities to translate current discoveries of the critical molecular changes that drive cancer into improved patient care.”

On this 40th anniversary of the declaration of the war on cancer, the National Brain Tumor Society is taking advantage of these opportunities. We are standing together with the brain tumor community - pulling together the tools, putting strategies into action, and working with allies – so that we can look back on these actions as the most significant taken in the war on brain tumors.