Monthly Archives: September, 2012

World Heart Day

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

A Weekly Advocacy Message from Mary Woolley: Prime Time for Research?

Dear Research Advocate,

The first presidential debate will be held Wednesday, October 3 at the University of Denver. This debate will likely be the only one in which health issues are discussed: Will the candidates talk about research and innovation in that context? This is our chance to speak up, whether they do (bravo!) or don’t (why not??). While watching, include the Twitter handle for the debates (@NewsHour) in your tweets, and afterwards, send a letter to the editor of your local paper. This is the final phase of our Your CandidatesYour Health voter education initiative. We know from experience over the years that all of us – stakeholders and advocates for research – become much more energized as the election nears. Be sure to join your colleagues and all fellow advocates in reaching out to the candidates you will see on your ballot on November 6. Tell them that knowing their views on our issues will influence your vote. In fact, don’t wait for the debate next week – follow this link and send your candidates an email today. Then, send the same link to three people you know, asking them to take action. Together, we can make research a campaign issue, building champions we can rely on in 2013 and beyond.

If you are looking for new arguments to make your case, we have recommendations for you. The Information Technology and Innovation Foundation (ITIF) has released a startling report about the long-term economic impacts of sequester, estimating that sequester could cost our economy between $203 billion and $860 billion in GDP! As if this weren’t bad enough, the cuts would result in 200,000 jobs lost in 2013 alone. You can find the full report here and watch the webcast of the report rollout here. An op-ed that appeared in The Week by former Sen. Bill Frist provides additional grist for the mill – he placed familiar statistics into context, making a compelling case for ensuring that medical research is a top national priority. One of many great quotes: “In 2010 alone, the most recent year we have accurate numbers for, medical research accounted for $69 billion worth of economic activity here in America and $90 billion worth of exports. Not to mention NIH funding alone created 480,000 new, good jobs. All in one year.”

In case you missed it, Dr. Francis Collins was on BioCentury TV this past weekend. It’s definitely a segment worth watching – Dr. Collins cites statistic after statistic demonstrating why it is so important to stop sequestration in its tracks. This Sunday morning at 8:30 a.m. ET on WUSA-9 in the D.C. metro area, Research!America Board member The Hon. Mike Castle will be on the air on BioCentury to discuss what the future may hold for research. Be sure to tune in! Indeed, many of our Board members are actively advocating for research: “Speak up now or suffer the consequences later,” said Research!America Board Chair, The Hon. John Porter, at a forum convened by the Union of Concerned Scientists (UCS) this week. Porter spoke about the consequences of apathy among scientists in a budgetary and political environment that poses dramatic risks for science, and again emphasized the importance of the coming election: “the most important in my lifetime.” Not the time for advocates to sit on the sidelines.

Several large pharmaceutical companies, including many Research!America members, have come together to form a new nonprofit to help streamline and accelerate the drug development process. Transcelerate Biopharma is the new outfit, based in Philadelphia. The aim is to develop a variety of standards to improve the efficiency of drug discovery, a pursuit that is notoriously costly and lengthy. See this recent Forbes article to learn more about Transcelerate Biopharma, ably led by CEO Garry Neil, formerly of Johnson & Johnson. In a note of synchronicity, the President’s Council of Advisors on Science & Technology (PCAST) released a new report urging FDA to speed approval of drugs for high-risk patients. For more information, read the article in the Wall Street Journal and see the full report here.

Finally, for an excellent overview of the “fiscal cliff,” see a new brief from Bloomberg Government, detailing implications for our economy and some insight into what our next Congress may look like.

Sincerely,

Mary Woolley

NTDs on Congressional Agenda

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.

A Weekly Advocacy Message from Mary Woolley: New Poll – Likely Voters Say to Congress: Stay in Session, Avoid Taking Us Over the Fiscal Cliff

Dear Research Advocate,

To call attention to the unintended consequences of the sequester, we held a press briefing today in partnership with United for Medical Research. Two Members of Congress who are still in town, Reps. Ed Markey (D-MA) and Brian Bilbray (R-CA), spoke about the high priority the nation must place on NIH and about the usefulness of data from a new national public opinion poll showing that 51% of Americans say that across-the-board cuts are not the right way to reduce the deficit. To see more poll results for use in your advocacy, click here. Other speakers this morning spoke about what’s at stake for everyone who cares about the research enterprise: patient hopes for cures delayed; industries unable to create new jobs and drive innovation in frustration about U.S. policies and lack of predictability; young scientists becoming discouraged and accepting offers to work in other countries – countries that have made research a clear priority. All of this further burdens our national deficit – we need research to combat the rising cost of health care by delaying the onset of Alzheimer’s and a host of other diseases. As Rep. Markey said, it will take high energy and coordination to get our message of research as a priority heard during the lame-duck session. You will be hearing more from us about how to assure that happens, but in the meantime, don’t forget that there is an important election going on (see below).

First a quick recap of what sequestration means, according to a new OMB report. Most agencies would be hit with an 8.2% cut – NIH alone would lose $2.5 billion in 2013! It is still unclear what level of discretion agency heads would have in carrying out these cuts. Losses at the CDC would be $464 million, the FDA would lose $318 million, and the NSF would be cut by $577 million. See our new one-pager with the latest data.

There is an additional dimension to the FDA cut that should be of significant concern to all advocates for medical progress. Part of the cut diverts industry-supplied user fees into deficit reduction. Those fees are paid by industry for the express purpose of ensuring FDA has the resources to review new medicines and medical devices on a timely basis. The precedent of playing bait and switch with user fees is a dangerous one, particularly since these fees are voluntary. Why should the drug and device industries agree to pay user fees in the future knowing that still more time will be lost in approvals – and patients will be forced to wait longer for new treatments and cures. We must work together to address it.

We all need to do our part to make sure the media is covering all the aspects of the threat of sequestration, making it more evident to all Americans just what is at stake. We’ve already seen National Journal release an article about our new polling data. The Atlantic released a story about how sequester would impact science budgets, citing another recent article from ScienceInsider. The Scientist also reported on the story, quoting Ellie Dehoney, our VP for policy and programs. This week, the Rochester (MN) Post-Bulletin reported how the cuts at NIH could impact the Mayo Clinic, a Research!America member. For those of you that may have contacts with local or national media, now is the time to let them know about the impact where you live.

We are only a month and half away from the election. We know from many of our members and partners that they are calling/writing/emailing campaigns to urge participation in the Your Candidates –Your Health voter education initiative. Please join the momentum and help drive the campaign … we don’t have much time left to make it clear to candidates that it isn’t only lobbyists and professional advocates (people like us at Research!America) who care about research and want them to talk about it. Every candidate should be hearing from hundreds of concerned stakeholders. Make sure you are in that number!

Demonstrations of the value of NIH and NSF research will soon be honored by Research!America member FASEB. Submit events, exhibits or web-based outreach that highlight the value that research agencies deliver and compete for a cash prize! For details, click here.

Sincerely,

Mary Woolley

AHRQ Report Examines Methods to Ensure Medication Adherence

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.

Washington Post Responds to Latest West Nile Reports

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.

Does the West Nile outbreak signal an epidemic of viral epidemics? Yes and no.

A Weekly Advocacy Message from Mary Woolley: Congress is back and there is lots to talk about

Dear Research Advocate,

Congress is back in Washington but still in campaign mode, making its decisions with the election very much in mind. A 6-month continuing resolution (C.R.) is expected to pass momentarily. The C.R. would put off appropriations decision-making until the new Congress has gotten under way, flat-funding the government through March of next year at fiscal 2012 levels. The atmosphere of fiscal uncertainty for the agencies that fund research, and everyone seeking that funding, is in fact demoralizing in the extreme. Compounding the problem is that the C.R. does nothing to address the looming problem of sequestration, which is scheduled to take effect on January 2, 2013. The administration is slated to release a report tomorrow detailing how the sequestration cuts would be implemented at the department and agency level; it is unlikely to single out research and innovation for special protection. Thus it is more important than ever that our stakeholder community unite in a call to stop sequestration. We encourage you to join us and other members of the United for Medical Research (UMR) coalition on September 20 in a press conference at the National Press Club at 9:30 a.m. Please RSVP to sbauer@gpgdc.com.

Last week, a timely op-ed by Michael Milken in the The Wall Street Journal highlighted the wondrous medical advances and economic prosperity that have been made possible through investments in research. The op-ed coincided with the Milken-sponsored Celebration of Science, a weekend-long series of discussions and other events shining a spotlight on the multifaceted contributions of science to the well-being of Americans and populations throughout the world. In the course of the proceedings, both Senate Majority Leader Harry Reid (D-NV) and House Majority Leader Eric Cantor (R-VA) spoke forcefully about the high priority the nation must place on medical research.

On Tuesday this week, the Albert and Mary Lasker Foundation announced the recipients of the prestigious Lasker Awards – often referred to as the ‘American Nobels’ – which will be presented in New York City later this month. The accomplishments of these awardees exemplify the power of research to unlock knowledge that is of invaluable benefit to society. Mary Lasker, a founder of Research!America, lives on with her hard-hitting message: “If you think research is expensive, try disease!” For timely information on the costs of disease as well as the value and promise of research, see our fact sheets. Use them in your advocacy!

Three other media pieces this week were timed for Congress’ return. Our Your Candidates-Your Health ad is running in Politico now. Use it to leverage your request to candidates to tell us all what they will do to make research a priority. A Washington Post op-ed co-authored by Rep. Jim Cooper (D-TN) and Research!America board member and AAAS Executive Director Dr. Alan Leshner fights back against kneejerk reactions to research based on the name of the project and/or the misconception that science is a mechanical process rather than an iterative, dynamic one. The American Association for the Advancement of Science (AAAS) and others have come together to recognize outstanding researchers whose contributions belie their detractors with the first Golden Goose Award ceremony.

With her letter in the The Wall Street Journal, Ellen Sigal, chairman and founder of Friends of Cancer Research and a Research!America Board member, emphasizes that the views and values of patients must be taken into account when FDA makes the risk vs. benefit calculations that factor so importantly in drug approval decisions. She points out that “risk” is in the eye of the beholder when a new drug is the last and best hope for a terminally ill patient. It is a welcome development that more patients and patient groups are stepping up to take their rightful place in the research process, ultimately driving it across the finish line faster. Patient engagement with Congress has always been high impact; now we need it to influence candidates to make medical progress a top national priority.

Sincerely,

Mary Woolley

ACS-CAN Rallies for Cancer Research Funding – With Some Help from Hoops

Sen. Tom Harkin (D-IA), left, and Sen. Frank Lautenberg (D-NJ) both spoke at the American Cancer Society Cancer Action Network rally on Capitol Hill on Thursday. Behind them is Christopher Hansen, president of ACS-CAN.

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.”

“Better therapies and a cure is attainable with the right kind of research and incentives,” Rep. Jared Polis (D-CO) said during a rally on Capitol Hill for the lobby day for the American Cancer Society Cancer Action Network. In the background is John Seffrin, PhD, CEO of the American Cancer Society and ACS-CAN and a Research!America Board member.

NIH Event Highlights Importance of R&D for New Diagnostics

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.

2012 Lasker Awards Announced

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.”

 

Capitol Hill Briefing: Parkinson’s Disease and Crowd-Sourced Research

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.

West Nile Spike Reminds Us That Global Health Research Benefits Americans, Too

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 Weekly Advocacy Message from Mary Woolley: Reading Between the Lines, part 2

Dear Research Advocate,

In last week’s letter, I highlighted research-related themes in the Republican National Platform. The good news included explicit support for basic and applied research and a pledge to make the R&D tax credit permanent. The bad news included strident criticism of FDA — such that support for adequate funding was unclear — and opposition to embryonic stem cell research. The Democratic platform asserts that Democrats will “double funding for key basic research agencies.” It also goes further than the Republican platform in improving the research and development tax credit and places a very strong emphasis on science education as critical to our innovation economy. And, it reiterates Democratic support for embryonic stem cell research.

Do platforms matter? Yes and no. Yes, in that the language comes from a broad base of each party’s membership. It lays out principles that we can ask policy makers to adhere to, and we can see how well those principles track with the polls we regularly commission. But also no — as a respected Nobel laureate reminded me in an insightful response to my last letter, it is a mistake to breathe easy based on the rhetoric in these platforms. Actions speak louder than words, and the fact is Republicans and Democrats alike supported the Budget Control Act (BCA), which not only applies across-the-board cuts to research spending but also tightly restrains annual growth in discretionary spending. That makes it difficult to envision any kind of “moonshot” for research or even a basic policy frame that truly promotes research and innovation. Despite what these platforms assert, policy makers have taken their eye off the ball. The public is not happy about that fact. Our new polling data shows that only 19% of likely voters believe elected officials are paying enough attention to combating disease. For more on this point, see my piece this week in The Hill’s Congress Blog. It ends with a call to action to engage the candidates — you can lead the way in doing just that among your network of colleagues, family and friends.

In case you missed it, a U.S. appeals court has upheld the legality of federal funding for embryonic stem cell research — a major victory for advocates and patients alike. See this recent ScienceInsider article to learn more about the ruling.

In past letters, I’ve written extensively about the grave threat that sequester poses to American research and innovation, and the news seems to be getting worse. According to the Alliance for a Stronger FDA, the user fees that FDA collects for review of drugs and devices may be subject to sequestration in addition to the funding provided through taxes. In effect, the FDA budget would be double-slashed with cuts totaling $294 million! Just imagine the havoc that these cuts would wreak on our nation’s ability to bring new, critical treatments to patients. With Congress reconvening next week, please remind lawmakers that they are playing with fire. Research is important. Innovation is important. Blind, across-the board funding cuts aren’t just an abdication of congressional responsibility, they are a divestment in medical and economic progress.

Sincerely,

Mary Woolley

Bloomberg View: Global Health Problems are U.S. Problems, Too

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.”