Americans Say Congress Should Take Swift Action to Assure Patients Benefit from Treatments and Cures for Diseases
New Poll Data Summary booklet reveals concerns among Americans about the pace of medical progress
Majorities across the political spectrum say it is important that the new 114th Congress takes action on assuring the discovery, development and delivery of treatments and cures for diseases in the first 100 days of the legislative session (75% Democrats, 64% Republicans and 60% Independents), according to America Speaks, Volume 15, a compilation of public opinion polls commissioned by Research!America. As Congress considers numerous proposals in support of research, including the 21st Century Cures draft legislation aimed at speeding the delivery of lifesaving treatments to patients, it is notable to see public support in favor of accelerating medical progress.
“The new Congress has the opportunity to reinvigorate our research ecosystem and enact policies that will enable the private sector to expand innovation,” said Research!America Chair John Edward Porter. “Congress must work in a bipartisan fashion to realize the potential of promising studies to prevent and treat disease.”
An increasing percentage of Americans say the U.S. Food and Drug Administration (FDA) should move more quickly in order to get new treatments to patients, even if it means there may be risks. In 2015, 38% favor faster regulatory review, compared to 30% in 2013. Meanwhile, 25% say the FDA should act more slowly in order to reduce risk, even if it means patients may wait longer for treatments. Another 19% are undecided on this question and 18% do not agree with either position. Continue reading →
Dear Research Advocate:
The cover story of this month’s National Geographic describes the recent wave of science doubt as a “pop culture meme,” featuring in-the-news examples like climate change and vaccines, and discussion of tough challenges like replicability of research, scientific literacy (of note: increased science literacy has been shown to lead to increased polarization of opinion about science), and what is meant, anyway, by effective “science communication”? The article doesn’t mention what I often call the “invisibility” problem (see, for example, data showing low percentages of Americans who can name a living scientist), but that topic was addressed directly and indirectly in several sessions at last week’s annual meeting of the American Association for the Advancement of Science (AAAS).
Data from a Pew Research poll of AAAS members show that a majority of scientists now believe that it is important to engage with the public, with a high percentage saying they do so regularly. That is welcome news. Another AAAS session brought out the importance of the quality of that engagement, exploring connecting with non-scientists in ways that is positive for both scientist and non-scientist. And, Professor Susan Fiske of Princeton spoke to an overflow crowd in her featured session about work showing that all of us – people in general – for better or worse, and with consequences to match – make quick judgments about others’ intent and their degree of competency. (Perception of competency + perception of good intent = trust.) Fiske noted that politicians are almost never trusted, although they are sometimes viewed as competent. Scientists are mostly considered competent, but they are also considered to be cold, a judgment that can throw their intentions into question. Fiske said that it is possible to change perceptions about scientists if they convey warmth and motivation to cooperate, showing ‘worthy intent.’ (If you have followed Research!America’s work in communicating to the non-science trained public, you know that we advocate saying and conveying, “I work for you.” That advice fits right in here.) Continue reading →
By Martine Rothblatt, PhD, Chairman and CEO of United Therapeutics Corporation.
Founded in 1996, United Therapeutics Corporation is a biotechnology company focused on the development and commercialization of unique products to address the unmet medical needs of patients with chronic and life-threatening conditions. We have four approved products on the market today and we are not stopping there! From the United States to Europe to the Asia Pacific, we are proud of our multicultural business environment where employees can collaborate with people all over the world. As a group, we are relentless in our pursuit of “medicines for life”® and continue our research into treatments for pulmonary arterial hypertension, cancer, and some of the world’s most complicated viral illnesses.
We are proud to partner with Research!America to promote better medical advancements, biomedical research, and overall greater global health initiatives. We have seen first-hand how tireless research and dedication to a cause can change the lives of thousands of patients and their loved ones. We began our story by conducting extensive research on a treatment for a deadly disease so rare, Pulmonary Arterial Hypertension (PAH), that other medical companies had abandoned any pursuits for treatments or a cure. Continue reading →
Today is the 13th anniversary of the American Dental Association‘s Give Kids a Smile Day program. Aimed at raising awareness and helping to address the high level of oral disease in kids, especially in underserved communities, this program enables volunteers to provide free dental care to those in need and urges policymakers to increase funding for children’s oral health.
Dental caries, referred to as a “silent epidemic” by former U.S. Surgeon General David Satcher, are the cause of many otherwise preventable health issues. Investing in comprehensive oral health care for children will result in fewer instances of dental caries in adulthood. Studies have shown that increased funding for combating oral health conditions results in fewer emergency room visits and lower health care costs across the board.
“Addressing preventable disease is the norm in today’s health care system. It is the most effective way to reduce costs and improve health. This is no different for oral disease. Working together, industry and its partners can enhance the prevention and treatment of oral disease through the development and testing of new treatments that will improve oral health, overall health and quality of life for all.” – Dr. Foti Panagakos, DMD, Ph.D, global director of scientific affairs, Colgate-Palmolive
Dear Research Advocate:
The President’s FY16 budget was released this week. It makes the case for, and does its math on the basis of, the end of sequestration. Hallelujah! If Congress agrees to discard this monster that no one wanted to begin with, perhaps the executive and legislative branches can work to position our nation for a better future. That most fundamental of goals has been neglected for far too long and it is now time to make strategic investments for our nation.
In that context, we’re excited about the level of interest in medical progress that has in many ways defined the early days of the 114th Congress. There are several bills in play that would recalibrate research and development policies and research funding to achieve a pace that meets the needs of patients and secures the public’s safety. We believe that NIH, CDC, AHRQ, FDA, and NSF should be the focus of a major strategic investment this year so that we can accelerate medical progress, so that we can put the brakes on Alzheimer’s, bolster our anti-infectious disease arsenal, and meet the other massive health/economic/fiscal/national security challenges before us. Read more here.
Dr. Margaret Hamburg has announced that she will be stepping down from her post as FDA Commissioner. She is an exemplary leader who has fulfilled a crucial role for the nation with characteristic vision, dedication and skill. More here.
And speaking of FDA, now is the time to share your input on the 21st Century Cures initiative. I have had the privilege of weighing in with Reps. Upton (R-MI) and DeGette (D-CO) and their staff members, and I encourage you to do the same. Join the conversation on social media with the hashtag #Cures2015 and send formal comments to email@example.com. Do it now: a new draft could come out as soon as two weeks from today. As I mentioned last week, Senator Alexander (R-TN) has launched an effort similar to 21st Century Cures. When details become available, Research!America will update you on ways to contribute to the Senate process.
As you strategize what your contributions to the various initiatives, working groups and legislative proposals will be, you might find it helpful to huddle with other organizations in the field. We’re planning a stakeholder strategy meeting for Research!America members, hosted at the offices of the Society for Neuroscience. Join us next Wednesday Feb. 11 at 1pm. Space is limited, so please reserve a seat by e-mailing Jordan Gates at firstname.lastname@example.org.
Exciting news Tuesday from Research!America board member and former Representative Patrick J. Kennedy and former Surgeon General Dr. David Satcher. Their partnership to address the state of mental health and addiction in this country and to achieve health equity is now formalized as The Kennedy Center for Mental Health Policy and Research within the Satcher Health Leadership Institute at the Morehouse School of Medicine in Atlanta. None of us should settle for the status quo approach when it comes to achieving mental health. It was noted that the military sees mental health explicitly as a “force multiplier;” giving our nation a competitive edge. I see the Kennedy-Satcher partnership as a force multiplier, too – there are no two people more passionate and none with a stronger track record as a leader for mental health. See key findings from a poll they commissioned here.
Mark your calendars, tomorrow (Friday Feb. 6) is an important day! It is “Give Kids a Smile Day” which promotes the importance of oral health and provides dental care to underserved children. In support of this effort, we are releasing our new Children’s Dental Health Research fact sheet. And speaking of David Satcher, he made dental health one of the foci of his tenure as Surgeon General. It was Dr. Satcher who called oral disease the “silent epidemic.” It is truly important to understand that children’s dental health is not a luxury; it is core to their health and wellbeing.
Tomorrow is also the last call for scientists at the post-graduate level and above to submit applications for “Connecting the Dots: Effectively Communicating Science to Non-Scientists,” a two-day program that we are hosting in partnership with the George Washington University School of Media and Public Affairs. Submit your application here by Friday.
Statement by Research!America President and CEO Mary Woolley on 21st Century Cures Initiative Discussion Draft
The release of the 21st Century Cures Initiative discussion draft is a major bipartisan accomplishment that represents a truly remarkable diversity of innovative ideas to speed the delivery of lifesaving treatments to patients – a testament to the extraordinary commitment of Congressman Fred Upton (R-MI), Congresswoman Diana DeGette (D-CO) and their respective staff members. The Initiative could be a game changer for the medical innovation ecosystem with provisions touching on virtually all phases of the research and development pipeline – from basic and applied research, to FDA review, to coverage and access. Among the many beneficial provisions Research!America fought for is a measure to reduce the administrative burden on researchers. We look forward to working with the 21st Century Cures team to greatly boost our nation’s commitment to groundbreaking research and drug development.