On September 29th, World Heart Day, the global health community will raise awareness about cardiovascular disease (CVD). Cardiovascular diseases range from heart failure, meaning the heart is not pumping enough blood, to a heart attack, which happens when blood vessels are damaged and blood flow to the heart is blocked. An estimated 17.3 million people died from CVD in 2008 and over 80% of all CVD deaths occur in low and middle income countries. This year, we are also raising awareness of one of CVD’s “hidden causes”: neglected tropical diseases (NTDs), and of the research necessary to combat these killers.
A group of parasitic and bacterial infections that disproportionately affect people in poverty, NTDs may be an important factor in the burden of CVD in the developing world. These diseases cause fever, disfiguring sores, visual impairment and organ failure. This includes heart damage that leads to CVD later in life. Chagas disease, a parasitic infection afflicting over 10 million individuals worldwide (including an estimated 300,000 people right here in the United States), can eventually cause heart failure if the parasite damages heart tissue. Up to 70% of individuals with African sleeping sickness will experience some degree of heart damage. Over 200 million individuals have schistosomiasis, another parasitic infection that can lead to lasting heart damage if the parasite invades the heart muscle. And dengue fever – another NTD emerging in the U.S. – has also been shown to reduce heart function in severe cases.
These risks highlight the importance of early detection and prevention of NTDs. U.S. researchers and federal agencies have made progress against many of these diseases and we must make sure to equip them with the diagnostic tools and drugs necessary to treat patients before they sustain heart damage. Similarly, improved surveillance and screening programs are needed to truly understand how many of the world’s CVD cases can be attributed to NTDs. In addition to prevention strategies like healthy eating and exercise, investment for NTD research is an important component in reducing the global burden of cardiovascular disease. To learn more about NTDs, please visit Research!America’s global health website.
-Morgan McCloskey, global health intern
On September 21st, Senator Chris Coons (D-DE) and Roger Wicker (R-MS) announced that the Senate Malaria Working Group was turning into an official Senate congressional caucus focused on combating 17 neglected tropical diseases (NTDs) in addition to malaria. With NTDs affecting over 1.4 billion people worldwide and documented cases of NTDs here in the U.S., this commitment to finding new solutions is good news. Past U.S. government involvement in the fight against NTDs has yielded promising results. The National Institutes of Health and the Department of Defense have funded crucial basic research for NTDs. Similarly, the Centers for Disease Control and Prevention have implemented strong surveillance programs and the U.S. Agency for International Development’s NTD Program has made remarkable progress toward controlling the spread of several NTDs with existing treatments. However, these programs are constrained by the limits of existing tools and continued funding is needed to advance NTD prevention and control. Some of the most commonly used drugs are not effective or have toxic side effects, resulting in unnecessary complications or the need for repeat doses. Vaccines and adequate diagnostic tools are also lacking for many of these diseases. While continuing to treat these diseases on the ground, research to develop new tools is vital. More effective drugs and diagnostics will improve current treatment and control programs, while new vaccines could eliminate the threat of NTDs altogether. Investment into NTD research to develop these new prevention and treatment methods is essential for a successful global fight against NTDs. Members of Congress are recognizing the importance of combating NTDs. As advocates, researchers and implementers, we need to continue to make our voices heard for the health and prosperity of Americans and people worldwide.
-Morgan McCloskey, global health intern
NIH Director, Research!America Board Member to Discuss Declining Funding for Science on BioCentury This Week
National Institutes of Health Director Francis Collins, MD, PhD, and a Research!America Board member, former Congressman Mike Castle, will appear on BioCenturyTV during the next two weeks to discuss declines in federally funded research.
“BioCentury This Week” airs at 8:30 a.m. Sundays on WUSA-9 in the Washington, DC, area. In other areas, the program is available on the show’s website at www.biocenturytv.com.
The September 23 show will feature Collins, who will discuss sequestration, NIH grant rates, ways to reduce the costs of clinical trials and the NIH’s public-private partnerships.
The September 30 show will feature Castle; Daniel Ford, MD, MPH, vice dean for clinical investigation at Johns Hopkins University, a Research!America member; and Douglas Williams, PhD, executive vice president for research and development at Biogen Idec. They will offer their solutions for science in the age of austerity, according to the show.
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.
As reported in the Washington Post, the number of West Nile virus cases in the U.S. is on the rise. Traditionally a disease that affects people in Africa, the Middle East and Asia, 48 states in the U.S. have reported cases in 2012 alone. Nearly 2,000 cases and 87 deaths, including one Wednesday in DC, have been reported overall. The West Nile virus, a neglected tropical disease or NTD, can cause flu-like symptoms or, in severe cases, even brain damage.
Peter Hotez, MD, PhD, director of the Texas-based product development partnership Sabin Vaccine Institute, recently wrote a New York Times op-ed addressing the increasing thread of West Nile right here in the U.S., “Tropical Disease: The New Plague of Poverty.” As Hotez points out, West Nile is just one of several NTDs that have a presence in the United States. Dengue fever, another virus transmitted through mosquitoes, has been reported in Texas, Florida and Hawaii. A recent estimate finds that 300,000 individuals in the U.S. have Chagas disease, an infection transmitted through insects that can cause heart failure and even sudden death. These NTDs pose an immediate threat to the health of Americans, particularly in impoverished areas of the South where poorer sanitation and drainage systems allow NTD “carriers” to thrive.
NTDs can go undocumented for long periods of time, can be extremely debilitating and have inflicted a large toll on peoples’ health and economic stability around the world. NTDs paint an increasingly troubling picture for American health. Toxic and ineffective, or in some cases no treatments, exist for many of these NTDs, and better surveillance and monitoring is desperately needed. With little financial incentive, private companies are reluctant to invest in this research. However, there is hope. Federally funded researchers at the National Institutes of Health have identified a new drug that has the potential to treat Chagas disease. Additional clinical trials will determine its safety and efficacy for widespread use. Bloomberg recently reported that another PDP, the Dengue Vaccine Initiative, has developed four dengue vaccines that are currently undergoing clinical trials. Continuing to fund this type of research and development is critical to ensuring that the promise of these vaccines becomes a reality.
In an effort to raise awareness about the importance of funding for NTD research, Research!America hosted a joint forum this summer entitled “Global Health Research and Development and the Hidden Burden of Neglected Tropical Diseases in Texas.” Additional support, including robust federal funding, will result in new prevention and treatment methods that are urgently needed not only to improve the health of individuals around the world, but right here in our own backyards. Please let your congressional representative know that even in today’s tough economic environment, funding for global health and NTD research must be a higher national priority.
A video of Research!America’s Texas forum on neglected tropical diseases is available here.
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.”