In an October article from Cell magazine (subscription required), Yale biologist Thomas D. Pollard, MD, explains his views on “why all scientists should feel obligated to do their part to support the community by advocating for the benefits of government investments in scientific research and training.”
Pollard illustrates how the political climate has changed in the past decade. No longer can scientists leave the advocacy to others in favor of lab work. That shortsightedness could have potentially disastrous effects on funding for a lab or institution.
The fact is that, as Pollard states, “weak tax revenues and growing deficits have led politicians to compromise funding for research in spite of the established benefit of basic research for stimulating economic growth.” The scientific community “must take responsibility to convince politicians that funding biomedical research will benefit not only human health, but also our economic well-being.”
Advocacy is particularly important due with government funding for scientific research in jeopardy with pending across-the-board budget cuts under sequestration. It is vital that scientists take the time to communicate with policy makers. In the past, Members of Congress such as Research!America Chair John E. Porter or the late Sen. Arlen Specter used their influence on Capitol Hill to champion funding for research. But it’s time for a new generation of politicians willing to speak on behalf of scientists.
Finally, Pollard notes several obligations of scientists which will enable successful advocacy both locally and in Washington. Those obligations include joining a professional society with an advocacy program and participating in their grassroots efforts. Scientists should also visit their representatives to explain how science is important to both individuals and communities at large. Finally, scientists should let their elected officials know about the funding of grant applications, whether by thanking them when a grant is funded or by explaining the impact of the lack of funds. These steps will help to promote science as a valuable cause for better health and economic prosperity.
Pollard’s article should serve as a wake-up call to scientists who believe that their funding will remain stable or increase without a significant effort on their part. Scientists must educate lawmakers about the benefits of biomedical and health research and step up efforts to find new champions for the research enterprise.
During the final presidential debate, research finally got some airtime. President Barack Obama noted that “… if we don’t continue to put money into research and technology that will allow us to create great businesses here in the United States, that’s how we lose to the competition.” Similarly, Mitt Romney emphasized his support for research, saying that “I want to invest in research, providing funding to universities … is great.”
It was great to hear both candidates acknowledge the importance of research for the future. As they explained, investment in research is crucial for supporting universities, creating jobs and maintaining America’s competitive edge (three of Research!America’s Top 10 Reasons Why the U.S. Should Invest in Global Health R&D). Research is also essential in protecting the health of the American people, as highlighted recently by a bipartisan group of Texas representatives.
On October 12, 21 Texas representatives sent a letter to the Department of Health and Human Services and the Centers for Disease Control and Prevention asking for more action to address the West Nile virus outbreak. Mentioning the significant burden of West Nile in Texas and throughout the country (4,725 cases and 219 fatalities this year alone), legislators requested that the agencies prioritize the development of a FDA-approved West Nile vaccine. Government-funded projects have made progress toward a West Nile vaccine in the past, and additional research investment could help to turn these vaccine candidates into a reality. Research to develop a vaccine is particularly important in light of new information on the long-term burden of West Nile. Recent studies have shown that 40% of West Nile patients still have severe, productivity-limiting symptoms several years after contracting the virus. Other researchers have discovered a link between the virus and chronic kidney disease, even among patients that did not show any West Nile symptoms originally.
In addition to the public health benefits of a West Nile vaccine, research investment into other neglected tropical diseases (NTDs) could also save American lives. NTDs like Chagas disease and dengue fever affect thousands of Americans every day, and political leaders must prioritize research for new prevention and treatment methods to fight these diseases around the globe and here at home.
-Morgan McCloskey, global health intern
The conclusion of “Eliminating Breast Cancer Health Disparities: Communicating to At-Risk Populations,” a white paper recently released by Friends of Cancer Research, is summed up with a quote from breast cancer survivor Rep. Debbie Wasserman Schultz (D-FL): “There have been so many advances in screening and treatment of cancer, but all of that is moot if women are not learning about their bodies, taking steps to reduce risk factors, and getting regular and appropriate screening.”
That exemplifies the key takeaway: The white paper is aimed at stakeholders from research to health care delivery, but stakeholders alone won’t be successful in achieving health equity. Patients themselves must be involved too.
The white paper includes four recommendations, with several additional bullet points within each recommendation. The recommendations include:
- Investigate disparities between women with cancer and healthy women;
- Build relationships that work directly with at-risk populations;
- Create expectations for minority participation in the scientific field;
- And use current and emerging technologies to engage a larger number of patients.
Support for the white paper was provided by The Avon Foundation for Women.
Friends of Cancer Research is a Research!America member, and FOCR’s chairperson and founder, Ellen Sigal, PhD, is a Research!America Board member.
Since 1992, when the United Nations declared October 17 as the International Day for the Eradication of Poverty, the world has come together on this day to recognize those who suffer and to renew commitments to fight poverty. This year, the U.N. is raising awareness of the violence and discrimination that accompanies extreme poverty. In addition to the threat of violence, the conditions of extreme poverty dramatically increase the risk of contracting neglected tropical diseases, a group of parasitic and bacterial infections that disproportionately affect people in poverty. This year, we must also raise awareness of NTDs and the research necessary to eliminate these diseases that affect more than 1.4 billion individuals worldwide, including people right here in the U.S.
Often referred to as “diseases of the bottom billion,” NTDs are closely linked to the poor living conditions experienced by impoverished communities. These diseases thrive in areas with poor sanitation systems, and inadequate shelters make individuals susceptible to bites from disease-carrying insects. Not only are poor individuals more likely to be exposed NTDs, but these diseases can trap individuals in a disabling cycle of poverty. Trachoma, the world’s leading cause of preventable blindness, results in an estimated $2.9 billion in lost productivity each year. Hookworm, an intestinal parasite that causes anemia and malnutrition, infects more than 575 million people worldwide and is estimated to cause a 43% reduction in future wage earnings.
On the International Day for the Eradication of Poverty, we must recognize this relationship between NTDs and poverty and renew our commitment to eradicating NTDs. Cost-effective prevention and treatment methods do not yet exist for many of these diseases. More effective diagnostics and drugs could substantially improve treatment outcomes, while vaccines could eliminate the risk of NTDs altogether. Additional research to develop these new tools is not only essential for efforts to eliminate NTDs but is a crucial step for global efforts to eradicate poverty.
-Morgan McCloskey, global health intern
Why do you think we should be investing in global health research and development? Research!America has just released “Top 10 Reasons Why the U.S. Should Invest in Global Health R&D.” This evidence-based list provides compelling reasons why these investments are critical for the U.S., ranging from the humanitarian benefits to research as a powerful driver of U.S. economic activity. The list can be found on Research!America’s new Global Health R&D Advocacy website.
The site introduces Research!America’s new initiative for neglected tropical diseases (NTDs), including a recently released fact sheet on NTDs in the U.S. Additional NTD resources include a global health budget section, a section on the value of the U.S. investment in global health, and a globally focused NTD sheet, which will be available soon — so check back!
Please let us know what you think should be included on the Top 10 list in our comments section below — we may incorporate your suggestions into our future publications!
Brian Vastag, science reporter at The Washington Post, recently found himself infected with the very disease he had been reporting on for months: West Nile virus. Detailing the raging fevers, interrupted sleep patterns and tingling in his arms and feet, he called himself a “West Nile zombie.” Brian’s story highlights the importance of research to develop new prevention, diagnostic and treatment methods for West Nile virus. It took eight weeks and several doctors before an infectious-disease specialist was able to correctly diagnose him with West Nile. Once diagnosed, he still had to endure the fevers, joint aches, headaches and interrupted work and simply wait for the virus to go away on its own. Beyond the agonizing symptoms of the disease, it was estimated that in 2002, West Nile cost the United States about $200 million in direct medical costs. Considering 2012 is on record to be the deadliest year we’ve seen, one can only imagine the medical costs of West Nile this year. As Brian points out in the article, we must acknowledge the true costs of these diseases. Research to develop a West Nile vaccine would not only save lives, but would save millions of dollars in future health care costs and lost worker productivity. Similarly, better diagnostic and treatment options would allow doctors to identify the virus sooner and more effectively treat patients.
In an effort to increase awareness about the importance of research for West Nile and other neglected tropical diseases, Research!America has released a new fact sheet called “NTDs in the United States.” The fact sheet details the burden of NTDs here at home and highlights important NTD research activities in the U.S. To see the fact sheet and learn more about NTDs, please visit www.researchamerica.org/gh_ntds.
-Morgan McCloskey, global health intern
We don’t usually link to blogs that focus on Baylor University’s athletic teams, but today is as good as any. The manager of the Our Daily Bears blog, Mark C. Moore, wrote a heartrending post on his young son’s diagnosis and prognosis with spinal muscular atrophy. Shortly after William was born, a friend remarked that he looked like a ragdoll in his mother’s arms; the comment stuck with Mark and Beth, his wife. They called a doctor, who was able to see them on October 4, 2011; that was the beginning of a journey that led to teams of doctors at both Children’s Medical Center (in Dallas) and UT Southwestern. The 1-year anniversary was the occasion for the blog post.
The SMA Foundation notes that the condition affects between 10,000 and 25,000 adults and children in the U.S., making it one of the most common rare diseases. And there is hope on the horizon.
“From the literature I devour in my spare time, researchers understand fairly well what has to be done to ‘cure’ SMA, they just haven’t figured out exactly how to do it yet,” Moore wrote. “Still, it feels like there is finally light at the end of the tunnel for the thousands of families affected by this disease (condition/syndrome, whatever you want to call it), we just have to reach it. That’s why the word ‘incurable’ rankles me like you would not believe. William’s condition is not incurable, because that connotes impossibility and forlorn hope. It is uncured.”
According to SMA Foundation, there are three therapies in clinical trials (including one in Phase III) with seven more in active development. But make no mistake, there remains distance between today’s science and a cure. We’re not there yet.
Despite its status as a rare disease, there are no shortage of groups whose primary concern is SMA: SMA Foundation, Families of SMA, Fight SMA, Miracle for Madison and Friends, The Sophia’s Cure Foundation, The Gwendolyn Strong Foundation, and The Hope and Light Foundation. A few, like SMA Foundation, Families of SMA and Sophia’s Cure Foundation fund research as well. Further research funding comes from the Muscular Dystrophy Association, which is a Research!America member.
Based on the information available on their websites, these groups fund research on SMA to the tune of $16.25 million per year. (That’s based on the numbers published by those groups, though not all of them are very recent or thoroughly spelled out.
The National Institutes of Health, meanwhile, funded $18.5 million worth of SMA research in FY11.
That’s only one of the reasons that the continuing threat of budget cuts and sequestration — across-the-board cuts scheduled to take place in January 2013 — is so problematic. Given what we could find, the NIH funds 53% of SMA research in this country. Declines in that funding, even slight declines, put more burden on philanthropy, which may or may not have received sufficient contributions to maintain the momentum toward a cure. Those 10,000 to 25,000 patients are left waiting for a cure.
And remember, that’s just one condition. The NIH reports it funds research on 233 diseases and conditions, from giants like cancer and Alzheimer’s disease to rare diseases like SMA.
If the NIH budget is slashed, what progress will we lose? How quickly will momentum be halted?
So it’s not a big deal if patients skip a pill or two? On the contrary. Several studies have looked at the issue and the range of their findings is exceptionally broad. One thing that cannot be disputed: The cost is extraordinary. On the low end of the range, the lack of adherence to medications costs the U.S. health care system $100 billion annually in direct costs.
The high end: $289 billion.
The reasons are obvious: In the absence of therapies, diseases and conditions aren’t slowed or defeated.
So the Agency for Healthcare Research and Quality took a look at a number of academic studies to determine if anything could be gleaned from an overview of interventions. Indeed, there are — but with caveats. Some interventions worked well with some diseases and conditions and less well with others. Some successful interventions were more expensive than others. And some interventions didn’t have enough credible information to determine whether they worked in the first place.
But AHRQ researchers did come up with some answers. Perhaps not surprisingly, the one near-universal successful intervention was reducing how much patients paid for their medicine. Generally speaking though, the researchers found that educational interventions and case management “offer the most consistent and voluminous evidence of improvements in medication adherence across varied clinical conditions.”
Educational interventions seemed to work particularly well with asthma; a self-management intervention for asthma was lauded, and it featured several components of educational intervention. But that method worked less well with those who were suffering from hypertension, hyperlipidemia and heart attack. Case management — or collaborative care — also worked particularly well in patients with depression.
The report also notes that while there’s no reason to think any of these interventions to improve medicine adherence will result in unintended negative consequences. But, they add, there have been so few studies looking at the issue that negative consequences can’t be completely ruled out.
For the second week in a row, an article on the West Nile outbreak has made The Washington Post’s top stories. On September 12, the Post responded to Centers for Disease Control and Prevention reports indicating that 2012 may be the deadliest year yet for West Nile in the United States. The article suggests that each year may only get worse as human travel increasingly brings us into contact with infected animals, and the viruses continue to evolve. There is currently no vaccine and no effective drugs to treat West Nile. With this growing threat, federal support for neglected tropical disease research has never been more urgent. This research is necessary in order to protect the health and future of Americans and people worldwide. See the article below for a discussion of the current West Nile outbreak as well as the future threat of viral epidemics in the United States.
The American Cancer Society and its advocacy arm, the American Cancer Society Cancer Action Network, kicked off its lobby day on Capitol Hill with a rally that urged Congress to preserve funding for research, prevention and treatment of cancer. But the event wasn’t just about cancer: Four Division I men’s basketball coaches also helped kick off the rally.
But it wasn’t merely a token appearance. The coaches — Tad Boyle of the University of Colorado, Paul Hewitt of George Mason University, Fran McCaffery of the University of Iowa and Mike Rice of Rutgers University — each had a personal story of how cancer had affected them or their families. The coaches are all part of Coaches vs. Cancer, an initiative of the American Cancer Society.
The coaches were joined by Sen. Tom Harkin (D-IA), Sen. Frank Lautenberg (D-NJ) and Rep. Jared Polis (D-CO). John Seffrin, PhD, chief executive officer of ACS and ACS-CAN and a Research!America Board member, joined Christopher Hansen, president of ACS-CAN, in welcoming the crowd and introducing the speakers.
For McCaffery, the issue is intensely personal. He explained that he lost both of his parents to colon cancer, and he now participates in a study at Iowa that is researching hereditary aspects of cancer. He also told the story of a 10-year old named Jacob, who visited the Hawkeyes last season. Jacob had advanced brain cancer but was able to enjoy an evening with the Iowa basketball team in its locker room and on its bench.
Four months after the visit, Jacob passed away.
“I think about my parents,” McCaffery said. He’s active in Coaches vs. Cancer “so Jacob could have more birthdays. I promise you, my wife Margaret and I are going to continue this fight.”
Rice, the second speaker, shared a recent story about his 14-year old son and his son’s best friend, who was diagnosed with leukemia. On Labor Day weekend, while nearly all of their friends were at the beach, Rice’s son and his friend were playing video games in a hospital room. One of the boys vowed to the other that he would never again waste a sunny Saturday playing video games.
Later, Rice visited the boy’s parents and told them of Thursday’s event.
“They said, please thank them — the American Cancer Society, the volunteers, the survivors, the researchers, the doctors and the elected public officials for [putting up] this fight,” Rice said.
Boyle told the crowd that he is a newcomer to Coaches vs. Cancer, but that he and his family would be supporting the initiative in whatever way they could.
Hewitt recalled the story of Michael Isenhour, who played for Hewitt at Georgia Tech. Diagnosed with acute lymphoblastic leukemia prior to the 2001-2002 season, Isenhour underwent treatment but died the following summer.
“Then it really hit home: My dad was diagnosed with prostate cancer,” Hewitt said. “But he was fortunate enough to go to [California] and undergo a breakthrough treatment. And today he’s still teaching me how to coach.”
Harkin and Lautenberg reflected on previous legislative successes — Harkin as the architect of the Americans with Disabilities Act and Lautenberg, who crafted the legislation that banned smoking on airplanes — and vowed to continue the fight. As with the coaches, both senators had up-close encounters with cancer: Harkin lost several siblings to the disease and Lautenberg defeated lymphoma in recent years. Polis surmised that, like so many Americans, most Members of Congress or a member of their families has been affected by cancer.
“[Research] funding is absolutely critical. It’s one of the most valuable investments we as a nation can make,” Polis said. “It’s an investment in our future, an investment in lives.”
On Friday, September 7, at the National Institutes of Health campus, the Trans-NIH Global Health Working Group hosted a lecture titled, “Rapid, automated diagnostics for tuberculosis: a potential new benchmark.” Mark Perkins, MD, who has worked at the Global Tuberculosis Programme of the World Health Organization and is currently the chief scientific officer at the Foundation for New Innovative Diagnostics (FIND), discussed the development of a new testing method for tuberculosis.
Identified as the cause of death for 1.4 million individuals in 2010, including people in the United States, TB is a significant global health concern. However, it is consistently underdiagnosed due to inadequate and outdated testing methods. As Perkins explained, “The primary test for TB in 2004 was practically the same as the primary test for TB in 1882.”
These outdated methods could take weeks to deliver results and could not detect drug resistant strains of TB, leaving patients completely untreated or treated with the wrong drugs. With recent reports from WHO estimating that 9% of TB cases worldwide are extremely drug resistant, new methods to recognize these strains were desperately needed.
Funded in part by the National Institute for Allergy and Infectious Diseases, collaboration between FIND (a Geneva -based product development partnership involved in research for global health), California-based biotech Cepheid and the University for Medicine and Dentistry of New Jersey led to the development of a new diagnostic for tuberculosis in 2010. The test, called Xpert MTB/RIF, allows health care workers to diagnose TB and detect drug resistance in less than 2 hours. The speed and accuracy of this test allows individuals to receive appropriate treatment the very day they are diagnosed, which is critical in those parts of the world where many patients live far away from medical centers. The Xpert machine has already been implemented in several countries with remarkable success; in clinical trials, more than 95% of TB infections have been accurately identified.
In light of this success, several audience members raised questions regarding the broader applications of this diagnostic. Perkins noted that Xpert could be used as a basic model for new diagnostics to identify other strains of drug-resistant TB and possibly other diseases as well. Other audience members had questions about the feasibility of implementing this diagnostic in low-income settings. In response to an inquiry about the costliness of the test, Perkins noted that “because TB has such a high mortality rate, any successful diagnostic tool is cost effective.”
He pointed out that the U.S. government and other partners have agreed to help finance the manufacturing of this test, reducing the market price from $16.68 to $9.98 per test. Perkins emphasized that this kind of support for new diagnostics is crucial, particularly because TB tests are not the only outdated diagnostic. Although new diagnostic tools could dramatically improve treatment for several diseases, only a few private companies and PDPs are working to develop them. Continued U.S. government support for this project and R&D for new diagnostics is essential for future efforts to combat critical global health issues.
The Albert and Mary Lasker Foundation has announced the winners of its 2012 Awards:
- Albert Lasker Basic Medical Research Award: Michael Sheetz, PhD (Columbia University); James Spudich, PhD (Stanford University); and Ronald Vale, PhD (University of California San Francisco)
- Lasker~DeBakey Clinical Medical Research Award: Sir Roy Calne (University of Cambridge, emeritus); Thomas E. Starzl, MD, PhD (University of Pittsburgh)
- Lasker~Koshland Special Achievement Award: Donald D. Brown, DSc (Carnegie Institute); Tom Maniatis, PhD (Columbia University)
The winners were announced Monday. The seven men will be honored at a ceremony September 21 in New York.
“The Lasker Awards celebrate biomedical research that has had a transformative effect on the practice of medicine, science, and the lives and health of people all over the world,” said Alfred Sommer, MD, chair of the Lasker Foundation’s board of directors, in a statement. “This year’s awards are no exception, honoring fundamental biological discoveries, life-saving surgical techniques and scientific statesmanship of the highest order.
According to the foundation’s press release, Sheetz, Spudich and Vale are being honored for their work in discovering proteins that transport cargoes within cells; Calne and Sterzl for their work in fashioning life-saving liver transplantation techniques; and Brown and Maniatis for their work with genes and for fostering the development of early-career scientists.
“The intellectual rigor and perseverance exhibited by this year’s laureates greatly extended the medical research community’s knowledge of cell biology, led to new surgical techniques that prevented many deaths, and provided a deeper understanding of genetics across generations of scientists worldwide,” Maria Freire, PhD, president of the Lasker Foundation, said in a statement. “With determination and verve, they boldly pursued new paths of inquiry that have benefited all mankind.”
23andMe — the company helping individuals interpret their own DNA — is hosting a Capitol Hill briefing September 13 that will focus on the role of crowd-sourcing as it relates to the future of research on Parkinson’s disease.
The event will be held from noon to 1 p.m. at the House Visitors Center, Room 201.
Speakers include Maryum Ali, daughter of legendary boxer Muhammad Ali and a Parkinson’s activist; former astronaut Rich Clifford, a Parkinson’s activist and patient; and Anne Wojcicki, co-founder and CEO of 23andMe.
Crowd-sourcing has proven to be a successful method of researching Parkinson’s; 23andMe discovered two new genes associated with Parkinson’s using just this approach. It and other groups, like the Ali family and the Michael J. Fox Foundation, have also made significant gains in research using crowd-sourcing. And with the current burden of Parkinson’s — 500,000 people diagnosed, a total cost to the U.S. of more than $6 billion per year — only expected to increase as Baby Boomers age, any advances in research on Parkinson’s is welcome.
To learn more about the event or to RSVP, contact Darren Willcox at DW@WStrategies.com.
A recent unsigned editorial by Bloomberg View restates what we’ve been saying for some time: Americans are not immune from global health problems.
The editorial focuses on West Nile virus and dengue, though there are certainly other diseases and conditions that were worthy of inclusion.
Worldwide travel means diseases are more transmissible than ever, and climate change gives disease-carrying mosquitoes more hospitable climates, the editorial notes. And a lack of treatments exacerbates the problem.
“Patients receive acetaminophen for fever and pain, fluids if they are dehydrated, and get-well wishes,” the editorial states. “No vaccines, no cures and no specific medicines exist to prevent or treat dengue or West Nile.”
The editorial lauds the National Institutes of Health for its focus on disease research that remains unattractive to industry and product development partnerships that have allowed new therapies to come to market.
“Although the U.S. is the largest funder of neglected-disease research, its spending declined 5.1 percent in 2010, according to an annual survey conducted by the research group Policy Cures,” the editorial concludes. “As the U.S. outbreaks of West Nile and dengue show, this spending is now a vital investment in the health of American citizens.”
A recent editorial in The Washington Times by Rep. Brian Bilbray (R-CA) and John C. Reed, MD, PhD, chief executive officer of Sanford-Burnham Medical Research Institute, makes a parallel between President John F. Kennedy’s call for a lunar mission in 1962 and the future of medical research’s battle against cancer.
In seven years, the authors note, America went from Kennedy’s proclamation to Neil Armstrong stepping out of the lunar module. (The op-ed ran two days before the legendary astronaut’s death.)
Because of our understanding of cancer and the treatments we now have for it, the authors write, we are in a better position to conquer cancer than the space program in 1962. Moreover, they write, we can get there because of four key components:
- Technology: Advances in DNA sequencing will allow treatments personalized to mutations in the cancer, instead of treating it based on the organ it’s affecting.
- Food and Drug Administration reform: The authors argue for better and more efficient methods of evaluating drugs. The recently passed FDA Reform Act is a step in the right direction, but more needs to be done, they write.
- Tax reform: In their words, “Few people realize the impact taxes have on investment. We must reform our tax code to encourage investment by the high-tech and life-science industry in research. Along with critically important National Institutes of Health funding, private-sector investment will drive research integral to finding a cure.”
“At a time when Washington finds it difficult to act on bipartisan legislation, the fight against cancer gives us something we can agree to collaborate on rather than fight over,” they write. “Now is the time for President [Barack] Obama to work with the speaker of the House and the Senate majority leader and take bold action to combat the cancer challenge.”
Of course, we hope that such bold action happens sooner rather than later. And likely voters think that too: Our most recent polling shows that nearly two-thirds of Americans think the new president should announce initiatives promoting medical progress during his first 100 days in office.