Category Archives: Aging/Longevity

Fear of vision loss top concern among Americans across all racial and ethnic groups

Stagnant funding could threaten progress in eye research

AEVR eventAmerica’s minority populations are united in the view that not only is eye and vision research very important and needs to be a national priority, but many feel that current federal funding ($2.10 per person, per year) is not enough and should be increased. This may stem from the evidence that most minority populations recognize to some degree that individuals have different risks of eye disease depending on their ethnic heritage.

And while these Americans rate losing their eyesight as having the greatest impact on their daily life and having a significant impact on their independence, productivity and overall quality of life, 50 percent of Americans who suffer from an eye-related disease are not aware of it.

These statics and more were the topic of discussion at a press event in Washington, D.C., today, where members of the media and leaders in the eye and vision research community gathered to interact with a panel of experts and weigh in on the topic of The Public’s Attitudes about the Health and Economic Impact of Vision Loss and Eye Disease. Continue reading →

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April is Parkinson’s Awareness Month

by Amy Comstock Rick, CEO of Parkinson’s Action Network

Amy Comstock Rick Headshot (2)April is now about halfway over but there is still plenty of time to help raise awareness for Parkinson’s disease and the millions affected.

Parkinson’s disease is a chronic, progressive neurological disorder and the second most prevalent degenerative neurological disease after Alzheimer’s. So far this year, people all over the country have honored loved ones with Parkinson’s disease by helping the Parkinson’s Action Network (PAN) and the other national Parkinson’s disease organizations spread awareness of the disease and its impact on our nation.

PAN, a nonprofit advocacy organization based in Washington, DC, would like thank the hundreds of grassroots advocates who have already asked their local and state governments to proclaim April as Parkinson’s Awareness Month. A sampling of all local proclamations can be found on the PAN website, and you can view images of our grassroots leaders receiving their proclamations from council members, mayors and governors around the country. PAN is also thrilled that our representatives in the U.S. Senate proclaimed April Parkinson’s Awareness Month.

So why is an awareness month important? Continue reading →

Research!America and the Pancreatic Cancer Action Network Host Panel Discussion – “A World Free from Cancers: Probable, Possible, or Preposterous?”

  Leading Experts Focus on the Challenges and Opportunities Affecting the Fight Against Cancer

ALEXANDRIA, Va. – February 27, 2014 A panel of leading health, economics and policy experts today discussed the prospects for a future where cancers are rendered manageable or even eradicated and the variables affecting progress toward that goal so that cancer patients are able to lead normal, productive lives – and thus be “free from” their cancers. The forum was hosted by Research!America and the Pancreatic Cancer Action Network. The event, titled, “A World Free from Cancers: Probable, Possible, or Preposterous?” was held at the New York Academy of Sciences.

Medical innovation has contributed to the economic success of the U.S. over the last 50 years and it offers enormous potential to make a meaningful difference in the quality and length of our lives in the next 50 years. Of all the critical trends that will create a prosperous future, the panelists believe that medical innovation will be the most important. In order to achieve a culture of change where science and medicine will be part of the solution, all stakeholders must stand up and advocate for pro-patient and pro-innovation policies and laws. By supporting a positive regulatory and legislative environment and working toward innovative solutions for complex health care challenges, policy makers can help combat devastating diseases like cancers.

“While medical innovation has driven extraordinary progress against cancer in the U.S. and peer nations, we know that globally, cancer cases and death rates are rising. And even in the U.S., the incidence of some cancers, including pancreatic cancer, is rising,” said Mary Woolley, president and CEO, Research!America. “We need to work together to address these alarming trends, and commit to overcoming the barriers to achieving a world free from cancers. Ensuring that U.S. policy makers sustain a policy environment conducive to rapid-pace medical innovation is crucial.”

The panel addressed the role of medical innovation, not only in the fight against cancer, but as a major force in our nation’s economic progress. Among the technological advances of the 21st century, medical innovation has been the biggest factor in improving the lives of patients, benefiting the health care system and improving prosperity. Over the past 50 years, medical innovation has been the source of more than half of all economic growth in the United States.

The panel, moderated by Fox News Channel’s Jim Pinkerton, featured several leading figures in the cancer and health care community, including:

  • Clifton Leaf, journalist and author, “The Truth in Small Doses: Why We’re Losing the War on Cancer-and How to Win It”
  • Julie Fleshman, president and CEO, Pancreatic Cancer Action Network
  • Laurie MacCaskill, seven-year pancreatic cancer survivor and chair, national Board of Directors, Pancreatic Cancer Action Network
  • Amy Abernethy, MD, PhD, director, Duke Center for Learning Health Care
  • Robert J. Hariri, MD, PhD, chairman, founder and chief scientific officer, Celgene Cellular Therapeutics
  • Scott Gottlieb, MD, resident fellow, American Enterprise Institute
  • Frank Lichtenberg, PhD, Courtney C. Brown Professor of Business, Columbia University

“Although medical innovation has played a key role in the fight against cancer and improving the overall cancer survival rate, much work lies ahead especially for deadly cancers such as pancreatic cancer where the five-year survival rate is just 6%,” said Julie Fleshman, president and CEO, Pancreatic Cancer Action Network. “In order to move towards a world free from cancers, the cancer infrastructure has to continue to keep up with the advances in science and our nation needs to make medical research a priority.”

The panel discussed the benefits of past breakthroughs for some types of cancer: there have been an estimated 50 million life-years saved and $4.9 trillion added in economic value due to innovative cancer treatments since 1990. However, further success in reducing the devastating impacts of cancers and accelerating medical innovation is dependent on developing effective collaborative solutions from an “ecosystem of innovation” – bringing together scientists, patients, health care providers, private-sector medical innovators, academia, payers and policy makers – to find solutions that will save lives from all types of cancers.

“We have made great progress since 1971, when President Nixon declared the war on cancer, in terms of understanding the epidemiology of the disease, improving diagnoses, discovering new treatment paradigms and novel therapeutic approaches to better manage cancers,” said Robert Hariri, MD, PhD, chairman, founder and chief scientific officer, Celgene Cellular Therapeutics. “But the progress we’ve made is not enough. We need to continue the momentum we have started and work together to change the course of human health for patients, health care, our economy and future generations.”

About Research!America

Research!America is the nation’s largest nonprofit public education and advocacy alliance working to make research to improve health a higher national priority. Founded in 1989, Research!America is supported by member organizations representing 125 million Americans. Visit www.researchamerica.org.

About the Pancreatic Cancer Action Network

The Pancreatic Cancer Action Network is the national organization creating hope in a comprehensive way through research, patient support, community outreach and advocacy for a cure. The organization is leading the way to change the survival for people diagnosed with this devastating disease through a bold initiative — The Vision of Progress: Double Survival for Pancreatic Cancer Survival by 2020. Together, we can know, fight and end pancreatic cancer by intensifying our efforts to heighten awareness, raise funds for comprehensive private research, and advocate for dedicated federal research to advance early diagnostics, better treatments and increase chances of survival. To learn more, visit www.pancan.org.

October is Breast Cancer Awareness Month

pinkribbonIt’s Breast Cancer Awareness Month! Although many great strides in new treatments and therapies for breast cancer have been made, patients and their families are still waiting desperately for a cure. According to the American Cancer Society, breast cancer is the most common cancer among American women, except for skin cancers. About 1 in 8 women in the U.S. will develop invasive breast cancer during their lifetime.

This month, organizations will raise awareness and funding for breast cancer, and it’s important that we continue advocating to policy makers, media and the public about the importance of funding research at the level of scientific opportunity. Throughout October, please visit Research!America members American Cancer Society and American Association for Cancer Research to learn more about preventative care, new research and ways you can help make a difference in the fight against cancer.

Now is the time to tell Congress that we need #curesnotcuts; we need access to quality breast cancer screenings, diagnostic services and treatment, and care for all women. Speak up for breast cancer research!

Highlights of the 2013 National Health Research Forum

Research!America’s National Health Research Forum — held September 12 at the Newseum’s Knight Conference Center in Washington, DC — examined the current and future state of research to improve health. This year’s theme was “Straight Talk about the Future of Medical and Health Research.” Three expert panels delved into different aspects of the research ecosystem.

_DSC5052Reseach Amercia NatHealth Research Forum 9.12.13 BarrettResearch!America’s president and CEO, Mary Woolley, and chair, The Honorable John Edward Porter, opened the program. Porter introduced Bart Peterson, JD, senior vice president of corporate affairs and communications at Lilly who delivered a brief keynote speech.

“We developed an innovation ecosystem, and that ecosystem requires sound public policy. From the private sector perspective, that includes solid intellectual property protection; a fair, rigorous, transparent regulatory system; a market system of health care delivery and pricing that offers choice for patients and health care providers,” Peterson said. “But the public sector has a role far beyond just producing sound public policy … Public funding for research, which is so threatened today, is absolutely critical to the future and we care about that as much from the private sector perspective as anybody else does.”

R!A 2013 Forum

The first panel, focusing on biomedical research and development, was moderated by journalist Eleanor Clift of Newsweek and the Daily Beast and featured John Crowley, president and CEO of Amicus Therapeutics and a patient advocate; William Hait, MD, PhD, global head of R&D at Janssen Pharmaceuticals; Margaret Hamburg, MD, commissioner of the Food and Drug Administration (FDA); and Peterson. The discussion centered on innovation within the pharmaceutical industry and the relationship between companies and regulators. Continue reading →

A Weekly Advocacy Message from Mary Woolley: Finally, a breakthrough in classification of R&D

Dear Research Advocate:

The Bureau of Economic Analysis has reclassified research and development costs from an “expense” to an “investment” when calculating GDP. We think Members of Congress should do the same. Common sense tells us R&D is an investment, not an expense; in general conversation we all talk about R&D as an investment, but it isn’t accounted for that way on the federal books. The arguments we’ve been making are now further bolstered by the BEA’s decision. Spread the word!

One hundred and sixty five university presidents and chancellors, representing all 50 states, have called on the president and Congress to reverse the pending “innovation deficit” in an open letter published last week in Politico before the August recess. With more than half of the economic growth in the U.S. since WWII attributable to innovation — largely due to the nation’s commitment to higher education and federally supported research — our society and our economy are at risk if we continue on today’s trajectory.

These are arguments to use as we work to keep research and innovation in the conversation during the August recess. We have launched a reprise of our social media campaign using the hashtag #curesnotcuts. Please take part, so that policy makers, at home in their districts this month, get the message loud and clear that Americans want medical research to be protected from indiscriminate cuts; so they hear that research and innovation require committed, robust investment. Earlier this week, I was on “Radio Smart Talk” on WITF-FM, a Pennsylvania NPR affiliate. During that show I spoke about the damaging effect of the sequester and fielded questions from listeners. When making your case, you might find it useful to pull from those radio soundbites or from the points we contributed to an editorial that appeared in the The (Newark, NJ) Star-Ledger. Continue reading →

Major Study Finds That Overall Population Health in U.S. Has Improved, But Has Not Kept Pace With Other Wealthy Nations

Americans are living longer lives but are spending more years afflicted with major illnesses such as Alzheimer’s disease, kidney disease, and mental and behavioral disorders, according to a study published online in the Journal of American Medical Association. Researchers show that the overall population health improved in the U.S. in the last few decades, however, illness and chronic disability now account for nearly half of the country’s health burden.

The objective of the study was to measure the burden of diseases, injuries and leading risk factors in the U.S. from 1990 to 2010 and to compare these measurements with the 34 countries in the Organisation for Economic Co-operation and Development (OECD). The researchers found that U.S. life expectancy for both sexes increased from 75.2 years in 1990 to 78.2 years in 2010; during the same period, healthy life expectancy increased from 65.8 years to 68.1 years. During this time period, improvements in population health in the U.S. did not keep pace with other wealthy nations. The authors note that the U.S. spends the most per capita on health care across all countries yet lags behind other high-income countries for life expectancy and many other health outcome measures.

In a recent national public opinion poll, two-thirds of Americans (66%) say that their quality of life has been improved by medical research and that the cost of health care is the most critical health issue in America today. We must continue to urge policy makers about the importance of funding medical research if we want to live healthier – not just longer – lives.

The full study is available online: http://jama.jamanetwork.com/article.aspx?articleid=1710486

Editor’s Note: This study is supported in part by the Intramural Program of the National Institutes of Health, the National Institute of Environmental Health Sciences, and in part by the Bill and Melinda Gates Foundation.

Member Spotlight: Parkinson’s Action Network

The genesis of the Parkinson’s Action Network goes back to 1987, four years before the organization’s founding. That year, Joan Samuelson left a career in law after being diagnosed with Parkinson’s disease; she threw her might into advocating for people living with Parkinson’s. Four years later, PAN was born, and its successful advocacy continues today.

Parkinson’s Action Network

The Parkinson’s Action Network (PAN) is a unique organization in the patient advocacy world. PAN represents the entire Parkinson’s community on funding and quality of life policy priorities for those living with the disease. PAN works with other national Parkinson’s organizations and is the only organization addressing government programs and policies that impact the Parkinson’s community.

“We’ve worked on a vision that if our community came together on policy issues, with one, singular voice, we would be much more effective,” said PAN CEO Amy Comstock Rick, JD, who became a Research!America Board member in March. “Really in the last 10 years, we’ve been able to effectively achieve that mission so that PAN is the only organization in the Parkinson’s community that works on policy issues, even though we have a number of national organizations.” Continue reading →

Alzheimer Research Cuts Show Folly of Sequestration

This post is an excerpt of a Bloomberg column by Albert R. Hunt  on how sequestration hurts medical research, especially in the fight to better understand—and hopefully cure— Alzheimer’s disease.

albert_hunt

Albert R. Hunt

Many Republicans, and Democrats, never thought the automatic across-the-board spending cuts known as sequestration would take effect. After all, they might produce dangerous, if unintended, consequences such as potentially bankrupting the U.S. health-care system, along with millions of families.

Typical Washington hyperbole, right? It actually is happening under sequestration, which kicked in three months ago, a product of America’s political dysfunction.

Because the cuts only affect the margins of a wide array of defense and domestic discretionary programs, there mostly hasn’t been an immediate pinch; the public backlash has been minimal. The long-term consequences, in more than a few cases, are ominous. Continue reading →

June is Men’s Health Month

Men’s Health Month increases the awareness of preventable health problems and encourages early detection and treatment of disease among males. According to MensHealthMonth.org, this is a time for health care providers, policy makers, the media, and individuals to encourage men to seek regular medical advice and early treatment for disease and injury. Continue reading →

UK plans to use presidency of the G8 to develop international agenda to address dementia

The United Kingdom recently announced a plan that will capitalize on its role as President of the G8 to promote an international cooperation to stop dementia.

This announcement sparks the beginning of increased international collaboration among world governments, industry and non-governmental organizations. Representatives of these diverse entities will gather at an upcoming dementia summit in London, scheduled for September. The global impact of dementia and Alzheimer’s is undeniable—over 35.6 million people worldwide battle with dementia. With the aging global population, this figure is predicted to exceed 110 million people by 2050. Continue reading →

President Obama announces BRAIN Initiative

President Barack Obama unveiled the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative on Tuesday. Described in a White House press release as one of the administration’s “Grand Challenges,” the goal of the initiative is to bring private and public sector research together to accelerate the development and application of technology and research into the function of complex neural networks. President Obama laid the ground work for today’s announcement during his State of the Union address in January, calling for an increased investment in research to achieve “a level of research and development not seen since the height of the space race.” Continue reading →

April is Parkinson’s Awareness month

PDF AprilParkinson’s disease affects millions of people worldwide. Patient advocacy groups like the Parkinson’s Disease Foundation and the Parkinson’s Action Network provide resources to patients and advocacy tools to promote more research on this devastating disease. PDF has a toolkit to empower advocates and patients to spread the word, educate themselves and others and learn more about Parkinson’s research funded by PDF.

PAN Tulip

Meanwhile, PAN is urging advocates to contact their representatives in Congress to support a bipartisan effort to increase funding for the National Institutes of Health; you can also plant a virtual tulip in honor of a loved one and make a contribution to PAN in their honor.

Survivor Margaret Tennent writes on PDF’s patient stories what it is like to live with Parkinson’s:

Continue reading →

One in three seniors dies with Alzheimer’s or dementia

A new report from the Alzheimer’s Association reveals that one in three seniors suffer from some form of dementia or Alzheimer’s by their death. Deaths attributed to Alzheimer’s and dementia have increased 68% from 2000 to 2010.

Harry Johns, president and CEO of the Alzheimer’s Association and Research!America Board member, said in an Alzheimer’s Association release  that “urgent, meaningful action is necessary, particularly as more and more people age into greater risk for developing a disease that today has no cure and no way to slow or stop its progression.”

USA Today reports that the number of people with Alzheimer’s disease is expected to nearly triple by 2050, resulting in an increasing burden on medical costs and caregivers. Currently, there is no way to prevent or slow the progression of Alzheimer’s or other types of dementia.

With growing health care costs consuming the federal budget, policy makers are considering ways to reduce the cost of Medicare and Medicaid. The Alzheimer’s Association predicts that the direct cost of caring for individuals with Alzheimer’s will total more than $200 billion in 2013 alone, with nearly $150 billion of that spending expected to come from Medicare and Medicaid. Increased investments in medical and health research will help improve the treatment and prevention of dementia and Alzheimer’s disease.

“We have wanted to see a $2 billion commitment to research, because we’ve seen what has happened in diseases like HIV/AIDS when a big financial commitment is made,” said Maria Carrillo, PhD, vice president of medical and scientific affairs at the Alzheimer’s Association, in the article. Over the same 10-year period that saw an increase in Alzheimer’s deaths, HIV/AIDS related deaths decreased 42%, according to the Alzheimer’s Association study.

This report shows that now is not the time to cut back on America’s investment in biomedical and health research. Contact your representatives and urge them to make research for health a higher national priority.

November 14 is World Diabetes Day

Each year on November 14, the International Diabetes Federation sponsors World Diabetes Day to raise awareness about the global burden of the disease. Although diabetes is historically associated with more affluent countries, diabetes rates are rising around the world. In 2000, about 170 million people had diabetes. Today, WHO estimates that diabetes affects more than 346 million people and about 70% of these individuals live in low- and middle-income countries. It is important to raise awareness of this growing burden and the links between diabetes and the infectious diseases that plague the developing world.

Infectious diseases like malaria, tuberculosis and neglected tropical diseases are endemic in several developing regions and affect millions of individuals every day. Any of these diseases can be devastating on their own, but recent studies point to the additional hazards of suffering from an infectious disease and a noncommunicable disease like diabetes. For example, individuals with diabetes who contract dengue fever have a much greater risk of developing severe (and potentially fatal) symptoms. Similarly, studies at the University of Texas have shown that individuals with diabetes have an increased risk of contracting tuberculosis.

Because dual infections are a significant health concern, more research is necessary to better understand the relationship between noncommunicable and infectious disease. Future research funding for either disease could have broad and unexpected applications. For example, diabetes research could yield additional insight into severe dengue fever or tuberculosis research might advance an understanding of diabetes. On World Diabetes Day, we must not only raise awareness of global burden of diabetes, but of the need to prioritize research to combat it and related infectious diseases.

-Morgan McCloskey, global health intern