Posts Tagged ‘FasterCures’

New Ad Reminds Capitol Hill about the Role of FDA

Tuesday, September 6th, 2011

Research!America’s outreach and advocacy efforts have focused on funding for the National Institutes of Health lately. And while that advocacy remains critically important, we also cannot forget the role of other government institutions play in research to improve health.

The Food and Drug Administration is one of those agencies, and it is absolutely critical in bringing new discoveries to patients.

Research!America and 75 other organizations signed on to an advertisement that is appearing in several Capitol Hill publications this week. The ad was sponsored by the Alliance For A Stronger FDA.

The ad is timely, as the Senate’s Agriculture Appropriations Subcommittee is marking up FY12 funding for FDA this week. It helps remind appropriators of the reach of the FDA: It oversees products that comprise 20% of U.S. spending. And besides the areas in which the FDA and medical researchers commonly intersect – drug therapies and medical devices – the agency is also responsible for regulating cosmetics and products that give off radiation, among other areas.

Other Research!America members to sign the letter include: Alliance for Aging Research; Alzheimer’s Association; American Cancer Society Cancer Action Network; American Heart Association; American Society for Pharmacology and Experimental Therapeutics; Association for Research in Vision and Ophthalmology; AstraZeneca; BIO; C-PATH; FasterCures; Friedreich’s Ataxia Research Alliance; Friends of Cancer Research; Heart Rhythm Society; Infectious Diseases Society of America; Johnson & Johnson; Juvenile Diabetes Research Foundation; Leukemia & Lymphoma Society; Lupus Foundation of America; National Organization for Rare Disorders; Parkinson’s Action Network; Pfizer; and Society for Women’s Health Research.

FasterCures Partnering for Cures

Thursday, July 28th, 2011

FasterCures’ 2011 Partnering for Cures meeting will take place November 6-8 at the Grand Hyatt in New York City, convening leaders from all sectors of medical research to help foster partnerships and collaboration within the field.

Speakers at this year’s meeting will include National Institutes of Health Director Francis Collins, MD, PhD; Food and Drug Administration Commissioner Margaret Hamburg, MD; University of California, San Francisco Chancellor Susan Desmond-Hellmann, MD; Novartis Institutes for BioMedical Research President Mark Fishman, MD, and many more.

Applications are now being accepted for Innovator Presentations from organizations engaged in collaborations focused on reducing the time it takes for medical breakthroughs to reach patients. These collaborations should involved two or more of the following sectors: nonprofit foundations, pharmaceutical and/or biotechnology companies, research institutes, universities, government agencies, investors and private philanthropists.

The application deadline is August 19. For application and evaluation criteria or to apply, click here.

FasterCures and UCSF are Research!America members.

Learning from the HIV/AIDS Advocacy Movement

Friday, June 17th, 2011

June 30 marks the 30th anniversary of the discovery of HIV. In recognition of the anniversary of this virus that exploded into a global pandemic, Margaret Anderson, executive director of FasterCures and Michael Manganiello, founding partner of HCM Strategists hosted a forum to discuss the results of their new report, “Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change.”

The forum convened leaders in the medical research community who played a role in the HIV/AIDS advocacy movement to discuss how the lessons of the movement that redefined the medical research paradigm can be applied to our own advocacy causes today.

Manganiello, who shared that he is living with HIV, revealed the five key elements of the HIV/AIDS advocacy model as he and Anderson saw it: attention, knowledge and solutions, community, accountability, and leadership.

These five elements, he said, were critical to the success of the movement. Getting attention was the necessary catalyst; knowledgeable activists were essential in getting their message across; a sense of community held the movement together; people had to be held accountable for making their requests a reality; and strong leadership on the outside (activists) were necessary to encourage leaders on the inside (Congress) to get results.

The panelists agreed that knowledge was perhaps most critical to the success of the HIV/AIDS advocacy movement.

“Knowledge is precisely the thing that got them attention,” panelist Maureen Byrnes, formerly of the Institute of Medicine and Pew Charitable Trusts, said. HIV/AIDS activists affected change by taking the time to learn how systems worked and how science worked. And once they got attention, they were logical: They knew what would be accepted in the political and scientific communities, said panelist Anthony Fauci, MD, director of the National Institute of Allergy and Infectious Diseases.

Advocates may be able to articulate a problem, but they must also be able to articulate a solution. Once you have the attention of the people you want, James Curran, MD, of Emory University said, you have to deliver. Panelist Brenda Lein of the Foundation for AIDS and Immune Research put it like this: “If you open a door, you have to decide what you’re going to do when you sit down at a table.”

The panelists concluded that three critical lessons from the HIV/AIDS advocacy movement can be applied to any cause:

    1) Be clear about what you want.
    2) Don’t wait to be invited.
    3) Question the way things are done: If you’re not satisfied, don’t settle.

FasterCures and Emory University are Research!America members.

Research!America & Partners Host a Forum on Science Journalism

Thursday, May 12th, 2011

Research!America, together with Pfizer and the University of Maryland, had an impressive lineup of scientists and journalists on the panels of the Maryland-based Research Partners Forum, “Let Me Be Clear: Science Journalism in the Age of the Genome and Twitter,” Wednesday at the National Press Club.

The forum aimed to generate an interactive dialogue about the ways journalists and scientists can work together in the evolving environments of both fields.

Mary Woolley, president and CEO of Research!America, began the event by presenting the results of a new Maryland-based poll commissioned by Research!America about science and journalism.

Susan Dentzer, editor-in-chief of Health Affairs and a Research!America board member, moderated two panels of experts.

The first panel included Kevin Klose, dean of the Phillip Merrill College of Journalism at the University of Maryland; Maggie Fox, technology and health care managing editor at the National Journal; Vickie Freimuth, PhD, director of the Center for Health and Risk Communication; Georges Benjamin, MD, executive director of the American Public Health Association and a Research!America board member; Gardiner Harris, public health reporter for The New York Times; and Margaret Anderson, executive director of FasterCures.

Dentzer opened the first panel by asking how best to communicate scientific progress and discoveries in 140 characters or less, as Twitter demands. Anderson’s response was simple, but enlightening: Communicate frequently, update your message and speak in plain English.

“Just dive in, is my approach,” Anderson said.

Who knew it could be so simple?

Of course, that’s not all there is to it. More often than not, scientific findings come in the form of complicated statistics that aren’t always easy for the non-scientific public to understand. What’s more, communication is black and white, while science is often shades of gray. Communicating scientific uncertainty was another topic discussed by the panel. How can it be done? A clear answer didn’t emerge. It’s a tough problem to tackle, but the important thing is that it’s being talked about. Strides are being made.

The second panel included Jack Watters, MD, vice president for external medical affairs at Pfizer and a Research!America board member; Alice Park, senior science reporter at TIME Magazine; Elie Dolgin, PhD, news editor at Nature Medicine; E. Albert Reece, MD, PhD, vice president for medical affairs and dean of the School of Medicine at the University of Maryland; Robert Gold, PhD, founding dean of the University of Maryland’s School of Public Health; and Carol Rogers, PhD, professor at the University of Maryland’s Philip Merrill College of Journalism.

Early in the second panel discussion, Reece made a keen observation: We have two groups that would like to be linked: science and journalism. We need to bridge that gap. Piggybacking off of that, Rogers pointed out that neither field can do it alone; they must work together.

Park noted that in this age of the Internet, where anyone can talk about anything, journalists need to help the public understand why scientific results may contradict and why journalists choose the sources they do when reporting a scientific finding. In other words, journalists must make critical scientific discoveries understandable to the public.

“What we [journalists] decide to report on indicates to you that it’s important,” Park said.

But journalists aren’t 100% responsible for communicating scientific messages – scientists themselves must do some of that, too. Watters contended that if you look for scientists to communicate, you’ll find that most of them want to, but they must be given the tools to do so. Scientists must be trained to communicate. Luckily, Rogers said, there’s been a dramatic increase in nonprofits offering communication training to scientists.

As one panelist noted, it’s important for scientists not to think of communicating with the public as “dumbing it down,” instead, think of it as making the information more accessible.

Park and Rogers concluded the final Q&A session with a suggestion for communicating science information: They called attention to the need to make science accessible in a very human way. The public appreciates it more when they have some kind of connection to the science, Park said – a theme also echoed in the first panel.

In his concluding remarks, Gold made it clear that the forum identified the need for individuals who are trained in both journalism and science.

One thing is for sure: “If you lose the communications battle … game over,” Anderson said.

Pfizer, the University of Maryland, APHA and FasterCures are Research!America members.

FasterCures Webinar Featuring NIH Director Francis Collins

Monday, March 7th, 2011

FasterCures is holding a webinar to separate fact from fiction about the proposed National Center for Advancing Translational Sciences with National Institutes of Health Director Francis Collins, MD, PhD, as the featured guest. The webinar will be an opportunity for advocacy groups, medical research foundations and others who have an interest in the medical research system to learn more about NCATS.

NIH announced the creation of the NCATS earlier this year. Its purpose is to close the gap between government and industry in the development of new drugs. It represents a step toward addressing the division among industry, academia and government when it comes to research and development – a step that is widely supported by the American public. According to a Research!America poll, 94% of Americans think the institutions conducting medical and health research, such as government, universities and private industry, should work together to develop new treatments and cures.

The webinar will be held March 16 at 4 p.m. Click here to register.

FasterCures is a Research!America member.

2011 Medical Research Trends

Tuesday, January 25th, 2011

Margaret Anderson, executive director of FasterCures, recently wrote an article in the Huffington Post about the top 10 2011 medical research trends to keep an eye on.

Some major themes appeared in Anderson’s list.

First, she placed a strong emphasis on addressing the Valley of Death, the time between when medical discoveries are made and when those discoveries make it to market. The National Institutes of Health and the Food and Drug Administration have already taken steps to bridge this gap. For example, NIH recently announced the creation of a new center, the National Center for Advancing Translational Sciences. For its part, the FDA is implementing new medical device regulations to improve the process of approving new medical devices. Despite these strides, more work needs to be done in this area, Anderson wrote.

Second, Anderson stressed the importance of research collaboration among industry, government and academia. This contention is widely supported by the American public. According to a recent Research!America poll, 88% of Americans think it’s a good idea for pharmaceutical companies, universities, hospitals and other institutions to work in conjunction with one another.

According to Anderson, pharmaceutical and biotech industries are increasingly engaging in collaborative efforts in pre-competitive research. As they collaborate with each other, they are also forming alliances with nonprofit disease foundations as advocates, sources of participants for clinical trials and potential partners in funding. But these collaborative efforts, along with the efforts of academia and industry, must be strengethened and more clearly defined.

Other medical research trends and issues Anderson touched on include:

  • When it comes to funding, researchers over the age of 40 are favored. The model needs to evolve to include younger investigators.
  • The pharmaceutical industry would do well to model off of the oil and gas industry’s data sharing frameworks and other models.
  • To discover new models for research, the U.S. should look to effective research models in other countries.
  • Similar to the Bureau of National Affairs’ Medical Research Law & Policy ReportOutlook 2011,” Anderson predicts that electronic health records will be a medical research issue in 2011, pointing out that researchers and patients must advocate for the use of electronic health record data in clinical research.

FasterCures is a Research!America member.

Think You’re an Innovator? FasterCures Wants to Hear from You

Wednesday, September 22nd, 2010

Research!America member FasterCures is looking for 30 innovators.

The 30 that are chosen will have 25 minutes to present their innovations at its upcoming Partnering For Cures meeting in New York on December 14 and 15.

FasterCures says it is looking for forward-thinking, multi-sector approaches to medical research, development, funding and/or partnering that are paving the way to accelerating the discovery and development of new medical solutions.

Applications are being accepted at the meeting’s website; there’s also a list of regulations and other information. Those chosen will have a chance to present to potential investors, partners and collaborators.

The deadline is coming up quickly, though: October 8 is your last chance to apply.

FasterCures Event Talks of Bridging the Gap

Tuesday, May 25th, 2010

Robert J. Beall, PhD, recounted the joy of hearing a cystic fibrosis patient’s wedding plans this summer. Beall, the president and CEO of the Cystic Fibrosis Foundation, a Research!America member, remembers it wasn’t long ago when CF patients weren’t expected to live long enough to attend elementary school.

But the strides made in identifying the root cause and finding a treatment for cystic fibrosis. Beall believes his organization’s success has created a “road map” for finding treatment for other rare diseases — “from test tube to bedside,” Beall said — and he outlined that map a briefing in the Senate last week. The briefing was held by FasterCures, also a Research!America member.

The process started with identifying the differences between a normal lung and a lung from a person afflicted with cystic fibrosis. Research led them to a hypothesis: Chlorides weren’t exiting the lung cells properly, though sodium was able to pass through normally. The result was a backup of material in the cell — “like a salt shaker,” Beall said — which in turned caused the cilia not to funcion properly.

After finding out what the problem was, the next step was to understand why the problem was occurring. The answer came in 1989 when a team of researchers (including Francis S. Collins, MD, PhD, now the director of the National Institutes of Health who had also worked on cystic fibrosis research at the University of Michigan) discovered the gene that led to cystic fibrosis.

Discovering the gene offered the chance to perform animal models, implement new screening programs and perform further research on gene therapy. And the discovery came at an opportune time; Beall said the research had been stalled for some time prior to the discovery of the gene.

With a therapeutic option in hand, the next step was finding a compound that would allow for the normal movement of chlorides outside of the cell. Relying on the normal model of academic research would’ve meant allowing two or three days to test only a handful of options.

“We had to look to industry,” Beall said.

And this was where the process reached a critical point. The Cystic Fibrosis Foundation entered into a $40 million contract with a San Diego-based firm that could test tens of thousands of compounds per day. The hope was that, once a compound was identified, the information could be sold for further development.

Indeed, it was.

“How could we incentivize them?” Beall said. “Take away their risk.”

But by taking away private industry’s risk, the Cystic Fibrosis Foundation took on significant risk of its own.

“We paid $40 million for one shot on goal,” he said. “We could’ve failed.”

Instead, they succeeded. The process yielded two compounds — VX70 and VX809 — that treated the basic defect of cystic fibrosis. A third compound, VX770, is now in the third stage of clinical trials, and as many as 30 other drugs are in the development pipeline.

Beall urged other groups to take the risk as well, believing the risk could pay off.

CF Foundation and FasterCures Hill Briefing on May 20

Tuesday, May 11th, 2010

The Cystic Fibrosis Foundation and FasterCures will present a Capitol Hill briefing, Leveraging Federal Investment to Speed the Development of Promising Therapies for Patients, on Thursday May 20 to spotlight the nation’s investment in medical research at the National Institutes of Health and examines how these dollars can be leveraged to create new therapies for patients and save lives.

NIH Director Francis S. Collins, Dr. Robert J. Beall of the Cystic Fibrosis Foundation, and Margaret Anderson of FasterCures will address:

* What lessons can be learned from the cystic fibrosis successes that can map the way for other diseases?
* How can federal investment at the NIH and other agencies be leveraged to answer important scientific questions in a way that accelerates the discovery and development of medical solutions for deadly and debilitating diseases?
* How can we bridge the “Valley of Death” between basic science discoveries and the creation of new therapies for patients?

Find out more on the FasterCures website, and to RSVP e-mail abouselli@fastercures.org by Monday, May 17.

FasterCures Webinar

Friday, April 9th, 2010

FasterCures will present an interactive webinar on Monday on TRAIN Central Station about the Pharmaceutical Assets Portal created by Clinical and Translational Science Awards (CTSA) consortium funded by NIH. The Portal is designed to help with the transfer of investigational drugs and biologics for academic research by creating relationships with the pharmaceutical/biotech industry.

When:

Monday, April 12, 2010

11:00 AM (PST) 1:00 PM (CDT) 2:00 PM (EDT)

Who:

  • Kate Marusina, PhD, MBA, manager, Research Facilitation and Industry Alliance, Clinical and Translational Science Center, University of California Davis School of Medicine
  • Dean J. Welsch, PhD, research fellow, Pfizer Global Research & Development, Indications Discovery Research Unit
  • Moderator: Margaret Anderson, executive director, FasterCures

 Where:

Online Meeting:

  1. Go to the webinar link
  2. Enter your name and email address
  3. Enter the meeting password: welcome
  4. Click “Join Now”

Audio Component:

Call-in toll-free number (US/Canada): 1-866-469-3239
Access code: 733 058 537

RSVP TODAY to Angelo Bouselli at abouselli@fastercures.org

Forum: Infusing Life into the Valley of Death

Friday, April 2nd, 2010

Wednesday, April 7, 2010, 8:30-10am, 1101 New York Ave. NW Suite 620, Washington, DC 20005

Parkinson’s Action Network and FasterCures invite you to participate in a forum about the Cures Acceleration Network, a provision in the health reform law, to learn how it can bridge the chasm between a basic scientific discovery and its application as a medical solution, known as the “Valley of Death.”

Speakers include John Myers, Office of Sen. Arlen Specter (D-PA); Amy Rick, CEO, Parkinson’s Action Network; John Schall, Deputy CEO, Parkinson’s Action Network; and Margaret Anderson, Executive Director, FasterCures. RSVP by Monday, April 5 to Angelo Bouselli abouselli@fastercures.org or 202.336.8900.

More information at www.fastercures.org/index.cfm/MediaCenter/PressReleases?NID=209.

Huffington Post: Top 10 Medical Research Trends To Watch In 2010

Friday, January 8th, 2010

Margaret Anderson, executive director of FasterCures, a Research!America member, looked forward to this medical research in the new year. She predicted the course of research at the National Institutes of Health and the Food and Drug Administration and drew attention to health information technology and health reform:

6) Healthcare reform: is that all there is? What will Congress and the rest of Washington do in 2010 with healthcare “reformed?” We hope to see attention devoted to medical research, which is key to reducing healthcare costs, ensuring a productive workforce, allowing us to compete globally, and most importantly improve quality of life.

Continue reading Anderson’s list.

FasterCures: Partnering for Cures Conference

Thursday, December 3rd, 2009

Nearly 600 medical research executives, scientists, policy makers and funders met this week in New York at FasterCures‘ inaugural Partnering for Cures meeting.

In a press release, FasterCures said the conference aimed to “facilitate multi-sector collaborations needed to turn a scientific discovery into an accessible therapy. This effort unites the power of philanthropy, passion of nonprofit disease organizations, and the expertise of biotechnology and pharmaceutical companies.”

At Wednesday’s opening plenary session, Partnering for Cures: Paving the Way to Cross-Sector Collaborations, PhRMA’s The Hon. Billy Tauzin, a Research!America board member, was a panelist along with Robert Beall of the Cystic Fibrosis Foundation, Kathy Giusti of the Multiple Myeloma Research Foundation, and Edward Benz Jr. of the Dana-Farber Cancer Institute.

Moderated by FasterCures‘ executive director Margaret Anderson, the panel discussed challenges facing the FDA, clinical trials and translational research.

Research!America’s report 2008 U.S. Investment in Health Research was used during the discussion to illustrate the percentage of funding that comes from venture philanthropists.

Thursday’s opening session, Breakthrough Science, was moderated by James Greenwood of the Biotechnology Industry Organization. Mara Aspinal of On-Q-ity, Stephen Friend of Sage Bionetworks, Levi Garraway of Dana-Farber, Garry Neil of Johnson & Johnson, and Rudolph Tanzi of Massachussetts General Hospital, discussed potential paradigm shifts when thinking about diseases.

In addition to plenary sessions, more than 40 research foundations presented their work, and a formal partnering system allowed one-on-one meetings between attendees. Breakout sessions included topics such as Maximizing Your Return on Philanthropy, Is the NIH Investing in Innovation? and Crossing the Valley of Death: The Translational Funding and Management Gap.

Find out more about the conference at www.partneringforcures.org, and follow @FasterCures on Twitter for the latest updates about their work. FasterCures, the Washington-based center of the Milken Institute, is a Research!America member.

FasterCures: Partnering for Cures

Friday, October 23rd, 2009

One of Research!America’s members, FasterCures, is convening Partner for Cures, a meeting which will address partnerships between industry, philanthropy and medical research foundations which can create a better research enterprise.

Partnering for Cures will:
• empower philanthropists to make informed investment decisions and
measure the impact and return on their philanthropy;
• enable medical research foundations to find the right partners and
investors needed to discover and commercialize new therapies; and
• facilitate biopharmaceutical industry partnerships that could yield
cutting?edge medical solutions.

Partnering for Cures will be in New York City on December 1-3, 2009. For program and registration information, see partneringforcures.org.

Spotlight on Member Blogs: Part 2

Friday, September 4th, 2009

Last month, we featured blogs by the many health and research organizations that make up our alliance. Here is this month’s sampling of our member’s blogs that have been covering the continuing discussion on health reform, current health research and more.

FasterCures Blog’s newest post is by the organization’s Chief Operating Officer Margaret Anderson. She writes about a recent piece in The New York Times which brings to light the importance of patient engagement in research.

Our member GE Healthcare’s GE Global Research blog, From Edison’s Desk, features videos by researchers who explain new technologies being created in GE’s labs. A recent post describes a technology to improve health: wireless patient monitoring devices that collect real-time information about patients that can then be analyzed by health care providers.

The New York Academy of Medicine, an institution dedicated to the health of people in cities, delivers a blog with the latest health research and public health initiatives that affects urban dwellers’ health. The blog recently linked to a World Bank report on the barriers to delivering clean water to the urban poor.

HealthPROSe is a blog written by the President and CEO and the Vice President for Policy and Program of the Association of Academic Health Centers. The authors have been following the health reform debate closely, drawing attention to issues important to the health care sector such as clinical trials and job growth. From a recent post on Obama’s planned address to Congress next week:

Will the President explain to the nation that whatever happens in the delivery of services will ultimately affect the nation’s research enterprise because of the unique role that academic health centers play in the nation’s health system? Will he explain how health reform must take account of how the clinical monies help to support the nation’s biomedical research through these institutions?

Previously: Spotlight on Member Blogs

Reuters: Funding Top Goal for New NIH Director Collins

Tuesday, August 18th, 2009

Francis S. Collins, MD, PhD, was sworn in yesterday as the 16th director of the National Institutes of Health. He spoke with reporters, including Reuters’ Maggie Fox, about his priorities for the institutes, starting with more federal funding for research:

On his first day on the job Monday, Collins told reporters he would press Congress for more stable funding of the agency, which has a budget this year of $30.9 billion.

The NIH has complained of “flat” funding in recent years, which Collins says translates to 17 percent less spending power since 2003. As a result, researchers are demoralized, good ideas never see the light of day and the United States is losing its lead in medical research, he said.

Predictable, stable funding “has to be our number one priority,” Collins said.

The economic stimulus package approved in March allocates $10.4 billion in extra money to NIH for 2009 and 2010. “What keeps me awake is … what is going to happen after two years of (stimulus package) funding ends,” Collins said.

Read Fox’s entire article online. (H/T FasterCures Smart Brief)

Your Congress-Your Health: Where America Stands on Health and Research

Wednesday, July 15th, 2009

Results from a new public opinion poll have been added to the Your Congress-Your Health Web site. In addition to surveying members of the 111th Congress, Research!America and our partners commissioned this national public opinion poll that features questions similar to those we are asking Congress.

poll

Also, the initiative was included in yesterday’s FasterCures SmartBrief, a roundup of health and research news delivered twice a week.

Participate in Your Congress-Your Health
As the nation addresses health reform, it is essential for constituents to know where their representatives and senators stand on these issues. Urge Congress to share their positions on issues important to your health by participating in Your Congress-Your Health. Research!America and its partners have invited all members of the 111th Congress to complete a questionnaire about research and other issues that affect our health. Learn more about the initiative, and find out about our partners.

FasterCures is a Research!America member.