This blog post is by Chris Nehls, originally posted June 17, 2014 on connectivity.cqrollcall.com Insider Tips for Email Communication With Congress Former Senator Conrad Burns of Montana reads his email Reports of email’s death in advocacy have been greatly exaggerated. Nowhere is this notion more true than on Capitol Hill. Even with the growing sophistication of social media platforms — not to mention the multi-billion-dollar lobbying industry — email remains the most important form of communication for both constituents and office holders alike. Still, advocates’ ability to bundle together emails en mass have made the tool a blessing and a curse for congressional offices. Email remains their most cost-effective way to communicate with constituents about their concerns; yet the sheer volume of electronic communications that most offices receive mean that congressional staff place a priority on how efficiently they sort and categorize incoming messages. For instance, some Senate offices receive as many as 25,000 pieces of incoming correspondence a week. At a recent forum hosted by the strategic communications firm Beekeeper Group and moderated by Bradford Fitch of the Congressional Management Foundation, House and Senate staffers revealed methods that advocates can use to ensure their messages capture the attention of congressional offices. Here are some insights: Social and Email Are Different First, it’s important to note that panelists emphasized that social media and email exist under two separate communications silos. Their offices’ social media accounts are the domain of press teams, not legislative staff. Twitter blasts about issues, therefore, are unlikely to grab the attention of those staffers who are helping members with policy decisions. Some staffers said their offices ranked social media communication just above faxes in terms of quality of correspondence. Keep It Personal Correspondence, even if it’s done by many people all at once about a particular issue, is still a human endeavor. Even for what amounts to form letters, make sure the organization sending the email is identified clearly. Staffers may have friends or contacts within the organization whom they can reach out to on the issue. Advocates that have personal relationships with staffers should do […]
Friends ~ last Thursday, the Senate Appropriations Committee passed the Senate version of the FY2015 defense appropriations bill. Earlier this year, Senator Christopher Coons (Democrat, Delaware) submitted a member request to include pulmonary fibrosis as one of the topics eligible for research funding through the … Department of Defense (DoD) Peer-Reviewed Medical Research Program (PRMRP – see: http://cdmrp.army.mil/aboutus.shtml The Senate bill ultimately appropriated $247,500,000 to PRMRP for FY2015 and included PF as one of the eligible research topics. IF this bill becomes law, or if the Senate and House ultimately pass an omnibus covering all 12 of the appropriations bills that retains the PF language, then we could celebrate a modest new pool of federal research dollars through DoD. This would be in addition to whatever funding appropriated for PF research for FY’15 from the National Heart Lung & Blood Institute – NHLBI. We will know later this year how Congress intends to handle FY15 appropriations (i.e. a Continuing Resolution, omnibus, etc.) and whether the PF language will become law. Congress will be in recess from August 1st through September 8th. BUT, with House and Senate members in their home districts, this would be a REALLY GOOD TIME to make an appointment to see your US Senators + US Representative (or, their home district Healthcare Legislative Assistants) and to specifically point out this hopeful opportunity for PF research funding. Ø PLEASE ask them to pledge to support the Senate Appropriations Committee version of the DoD appropriations bill (specifically the report language including PF in the PRMRP program on Page 252 as reprinted below). Finally, one instant Action Item for your To Do List…Please take a few minutes and send a THANK YOU NOTE to Senator Coons. We need to keep our supporters on Capitol Hill enthusiastic about working on the wide range of strategies to solve the lethal problem of PF. Senator Coons (and his staff) has been especially helpful to the PF cause since he was elected in 2010. Please help by thanking him personally for his efforts on behalf of the PF community. Address your personal notes to: […]
From our friends at govdelivery.com… Committee Members Take 21st Century Cures From Coast to Coast House Committee on Energy and Commerce sent this bulletin at 07/28/2014 05:33 PM EDT FOR IMMEDIATE RELEASE July 28, 2014 CONTACT: Press Office (202) 226-4972 Committee Members Take 21st Century Cures From Coast to Coast McMorris Rodgers: “This goal is not political or partisan. It is personal.” The 21st Century Cures initiative has been a collaborative effort from the start. Through a series of four white papers and a number of hearings and roundtables already, the committee has sought ideas from individuals and groups all across the country. Members look forward to continuing the 21st Century Cures initiative in their districts with roundtables and events over the coming weeks. Committee member and House Republican Conference Chair Cathy McMorris Rodgers (R-WA) writes for Forbes that, “as a Congress, we will ensure – with your ideas, big and small – that we can take medical advancement into the 21st century. This goal is not political or partisan. It is personal. Medical innovation affects everyone…” Committee member Rep. Leonard Lance (R-NJ) also recently announced his office is asking for input from his New Jersey constituents: “To do this right we need first-hand experience and testimony from people who fight this battle every day.” NJ.com reported, “Lance is asking constituents from New Jersey’s Seventh Congressional District to email in their ideas, suggestions or questions on the initiative to NJ07cures@mail.house.gov. These ideas will then be researched and incorporated into a report Lance will present to the Committee.” Join the effort by emailing email@example.com, follow us on Facebook and Twitter, and join the conversation using #Path2Cures. July 28, 2014 The Noblest Cause Of Our Time: Saving Lives By Rep. Cathy McMorris Rodgers (R-WA) Seven years ago, just hours after giving birth to our son Cole, I learned how a single diagnosis can change your whole life. How two simple words – Down syndrome – are associated with lifelong complications and heart defects and Leukemia and even early Alzheimer’s. But in that moment, when Cole was taken away for surgery and we […]
IPF Patient Organisations have identified concrete recommendations and urge European institutions, national governments, funders/payers and healthcare organisations to take the following actions: [Patients in the USA are also urged to sign the Patient Charter. Celebrate IPF World Week 2014, September 28 – October 5, by joining European Pulmonary Fibrosis patients in signing the Patient Charter!] Click here to read the entire Call to Action.
A Message from United States Food and Drug Administration: Dear idiopathic pulmonary fibrosis meeting attendees, Thank you for attending the public meeting on idiopathic pulmonary fibrosis patient-focused drug development! FDA collected valuable information on the disease, the impact it has on patients’ lives, and patients’ perspectives on treatment options. We truly appreciate the courage, effort and time invested from everyone who was able to attend the meeting in person or on the web. We know that not everyone who wanted to come to this meeting was able to attend. For anyone who missed the meeting or is interested in what was discussed, we have posted a full recording of the meeting on our website: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm395774.htm In addition to the input we gathered at the September 26 meeting, we encourage patients, caregivers, and other stakeholders to submit written comments to the online public docket. The comment period closes on November 26, 2014. Submit your comments through this website: http://www.regulations.gov/#!documentDetail;D=FDA-2014-N-0865-0001 FDA is particularly interested in hearing patients’ perspectives on the questions outlined in the Federal Register Notice that announced this meeting. These questions are pasted below for your reference, and the Federal Register Notice can be found here: http://www.gpo.gov/fdsys/pkg/FR-2014-07-08/pdf/2014-15871.pdf Again, thank you to everyone who attended the September 26 meeting. If you have any questions, please email PatientFocused@fda.hhs.gov. Questions for Discussion Topic 1: Disease signs, symptoms and daily impacts that matter most to patients 1) Of all the symptoms that you experience because of the condition, which 1-3 symptoms have the most significant impact on your life? (Examples may include shortness of breath, cough, fatigue, etc.) 2) Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of activities may include household chores, walking up the stairs, etc.) a) How do your symptoms and their negative impacts affect your daily life on the best days? On the worst days? 3) How has your condition and its symptoms changed over time? Topic 2: Patient perspectives on current approaches to treating idiopathic pulmonary fibrosis 1) What […]
Reproduced from FDA.gov The U.S. Food and Drug Administration today approved Esbriet (pirfenidone) for the treatment of idiopathic pulmonary fibrosis (IPF). Idiopathic pulmonary fibrosis is a condition in which the lungs become progressively scarred over time. As a result, patients with IPF experience shortness of breath, cough, and have difficulty participating in everyday physical activities. Current treatments for IPF include oxygen therapy, pulmonary rehabilitation, and lung transplant. “Esbriet provides a new treatment option for patients with idiopathic pulmonary fibrosis, a serious, chronic lung disease,” said Curtis J. Rosebraugh, M.D., M.P.H., director of the Office of Drug Evaluation II in the FDA’s Center for Drug Evaluation and Research. “We continue to help advance medication therapies by approving products that treat conditions that impact public health.” The FDA granted Esbriet fast track, priority review, orphan product, and breakthrough designations. Esbriet is being approved ahead of the product’s prescription drug user fee goal date of Nov. 23, 2014, the date the agency was scheduled to complete the review of the drug application. Esbriet acts on multiple pathways that may be involved in the scarring of lung tissue. Its safety and effectiveness were established in three clinical trials of 1,247 patients with IPF. The decline in forced vital capacity – the amount of air which can be forcibly exhaled from the lungs after taking the deepest breath possible – was significantly reduced in patients receiving Esbriet compared to patients receiving placebo. Esbriet is not recommended for patients who have severe liver problems, end-stage kidney disease, or who require dialysis. Esbriet should be taken with food to minimize the potential for nausea and dizziness. Patients should avoid or minimize exposure to sunlight and sunlamps and wear sunscreen and protective clothing, as Esbriet may cause patients to sunburn more easily. The most common side effects of Esbriet are nausea, rash, abdominal pain, upper respiratory tract infection, diarrhea, fatigue, headache, dyspepsia, dizziness, vomiting, decreased/loss of appetite, gastro-esophageal reflux disease, sinusitis, insomnia, decreased weight, and arthralgia. The FDA also today approved Ofev (nintedanib) for the treatment of IPF. Esbriet is manufactured for InterMune, Inc., Brisbane, California. The FDA, […]
As appeared in the Minneapolis StarTribune, October 31, 2014 The Star Tribune reports that spending on the Minnesota campaigns for governor and the state House has topped $22 million. The Center for Public Integrity reports that roughly $998 million has been spent on television ads for state-level offices and Senate seats nationally. To fight Ebola — which has claimed nearly 5,000 lives globally — Congress appropriated $88 million; NBC and CNN report $57.2 million raised by six charities. Ebola funds raised: $145.2 million. Pulmonary fibrosis (known as PF or IPF) — the disease that is killing me — takes 40,000 American lives a year, the same number as breast cancer. Over the last five years, spending on PF research by the National Institutes of Health has averaged $32.6 million a year (0.11 percent of NIH’s budget). Minnesota ranks 17th in PF mortality in the United States. We must reorder the public’s and our government’s priorities. $998 million for (senseless?) political campaign spending, $145 million to fight Ebola and less than $33 million ($150 per pulmonary fibrosis fatality annually) to find a cure for PF, which is but 1 of 7,000 so-called rare diseases in the United States. There is a crisis in funding medical research in America. We all need to speak loudly to that clear and present danger. Paul Fogelberg, Wayzata Click here to download the letter to the StarTribune and find out how you can write to your local newspaper. Make a difference today!
How to Email Congress and Make It Count By Chris Nehls Reports that email is dead as an advocacy tool have been greatly exaggerated—and nowhere is this notion more true than on Capitol Hill. Even with the growing sophistication of social media platforms, stodgy old email remains the most important form of communication for constituents and office holders. Though mass emailings have made the tool a blessing and a curse for congressional offices, email still remains the most cost-effective way to communicate. And with the election adding a major cast of new faces— both lawmakers and their staff—those who want to influence Congress in coming weeks will need to know how to use it to best effect. Click here to read the entire article.
On February 25, 2015, Paul Fogelberg testified at a Congressional Briefing on Capitol Hill on Pulmonary Fibrosis, hosted by US Representatives Erik Paulsen (R, MN-3) and Steve Cohen (D, TN-9) and Senator Christopher Murphy (D, CT). The event was excellent with nearly 100 people attending. Please the attached to read the agenda and the remarks. We are making progress! Congressional Briefing Agenda Statement Cong. Brief. PF 02-25-2015
From: The New York Times By: Newt Gringrich April 22, 2015 MCLEAN, Va. — NO one who lived through the 1990s would have suspected that one day people would look back on the period as a golden age of bipartisan cooperation. But in some important ways, it was. Amid the policy fights that followed the Republican victories of 1994, President Bill Clinton and the new majorities in Congress reached one particularly good deal: doubling the budget for the National Institutes of Health. The decision was bipartisan, because health is both a moral and financial issue. Government spends more on health care than any other area. Taxpayers spend more than $1 trillion a year for Medicare and Medicaid alone, and even more when you add in programs like Veterans Affairs, the Children’s Health Insurance Program and the Indian Health Service. Unfortunately, since the end of the five-year effort that roughly doubled the N.I.H. budget by 2003, funding for the institutes has been flat. The N.I.H. budget (about $30 billion last year) has effectively been reduced by more than 20 percent since then. As 92 percent of the N.I.H. budget goes directly to research, one result is that the institutes awarded 12.5 percent fewer grants last year than in 2003. Grant applications, over the same period, increased by almost 50 percent. Even as we’ve let financing for basic scientific and medical research stagnate, government spending on health care has grown significantly. That should trouble every fiscal conservative. As a conservative myself, I’m often skeptical of government “investments.” But when it comes to breakthroughs that could cure — not just treat — the most expensive diseases, government is unique. It alone can bring the necessary resources to bear. (The federal government funds roughly a third of all medical research in the United States.) And it is ultimately on the hook for the costs of illness. It’s irresponsible and shortsighted, not prudent, to let financing for basic research dwindle. For example, the total cost of care for Alzheimer’s and other dementia is expected to exceed $20 trillion over the next four decades — including […]
* Endorsed by 256 patient organizations! (06-18-15 National Health Counsel letter) 230 co-sponsors in the US House of Representatives as of June 25, 2015 109 Republicans and 121 Democrats This 309 page bill will significantly increase funding for the National Institutes of Health (NIH), increasing its budget over the next five fiscal years by $14.5 billion … from the current $30.3 billion to $31.8 billion in FY2016; $33.3 billion in FY’17 and $34.8 billion in FY’18. The bill also establishes a new “NIH INNOVATION FUND,” which would be funded with an additional $2,000,000 each year from 2016 through 2020. If your Representative is on the list, please thank them for supporting medical research! IF YOUR REPRESENTATIVE IS NOT ON THE LIST, PLEASE CALL AND/O R WRITE THEM IMMEDIATELY ASKING THEM TO CO-SPONSOR THE BILL! Click this link to view the complete list of sponsors a state-by-state sponsor listing: HR 6 ~ Cosponsor List 6-25-15
Take a quick look at a few key slides from the presentation that Congressman Baird will make on September 3rd. Simply click on this link to download them: Advocacy Slides