Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
LEGISLATION MAKES WAY THROUGH GENERAL COURT Lawmakers on Beacon Hill work to make up for a lackluster beginning of 2009, with the cloud of corruption scandals hanging over senior lawmakers, including former speaker Sal DiMasi. DiMasi has been replaced with Robert DeLeo. Changing leadership teams has meant changes in committee chairs. Two bills punctuate the […]
CT TO CONVENE SPECIAL PANEL ON BLEEDING DISORDERS Much depends on the outcome of the special legislative study group on Bleeding Disorders.聽 The study group is expected to consider issues confronting people with bleeding disorders across the lifecycle.聽 Co-chaired by State Representatives Karen Jarmoc and Matthew Conway the panel is expected to begin meeting in […]
MARKETING RULES, 2010 ELECTION DOT ME’S COMING TERM The most important development in Maine is the departure of Jude Walsh, Governor Balducci’s special assistant for Healthcare Finance to Gould Associates. Walsh was the Governor’s point person for facilitating cost containment amongst chronic conditions. Balducci’s days are numbered literally. Term limited in 2010, it is unclear […]
The long awaited, Chairman’s mark from the Senate Finance Committee has finally been released.聽 The 223-page document, entitled America’s Healthy Future Act of 2009, underscores the lower costs, quality and affordable health coverage it will provide individuals and families.聽 Chairman Max Baucus declares “the Finance Committee carefully worked through the details of health care reform […]
Drew E. Altman, Ph.D., President and Chief Executive Officer at the Kaiser Family Foundation highlighted the potential cost of premiums in 2019 in a recent “Pulling It Together” update.聽 Assuming that premium increases over the next ten years revert to the average of the last ten years, 8.7%, he asserts that premiums for a family […]
CER has been a priority issue for the HFA.聽 The necessity to cut costs led Congress to address CER in the health care reform debate (although CER is not a “new” issue).聽 Our commitment to education and awareness prompted the need for a document that outlines a definition and summary of CER.聽 聽This document has […]
We Read…You Listen…We ALL Decide!聽 This is the mission statement from a group dedicated to creating audio versions of the lengthy health care reform bills in Congress.聽 Over 80 dedicated volunteers, many of them voice over actors, spent hours recording H.R. 3200.聽 The goal of hearthebill.org is to ensure everyone has an opportunity to familiarize […]
Jim Dawdy and Alex Ell are highlighted in a video, HFA recently posted on the website’s homepage.聽 Their message:聽 Share your story! 聽Jim and Alex highlight the importance of聽visiting Congress, discussing the issues (lifetime caps), and their love for summer camps that support the bleeding disorders community across the country.聽 HFA appreciates the hard work […]
Over 4 million businesses, employers, government agencies, insurance companies, billing firms, and all their business associates that may include pharmacy benefits managers, and pharmaceutical companies as well as marketing firms and data miners.聽 Patient consent is no longer required to share health records, no matter how embarrassing or intensely personal the contents may be.聽 While […]
Every so often it is important to take stock of where you are, where you have been and where you are going in politics. The national debate around healthcare reform has garnered a majority of the TV time and column inches in the newspaper. Events happening in DC right now are critical. Regardless of the […]
Nathan Wilkes, bleeding disorders community member, 聽has been invited to be a guest and sit in President Obama’s box during the Joint Session address.聽 Click here to read more.聽 To watch the Joint Session online聽tune into C-SPAN. The Wilkes’ story聽was featured on the White House website.聽 Their story illustrates the struggles families with expensive, rare […]
On September 2, Speaker of the House Nancy Pelosi and Senate Majority Leader Harry Reid sent a letter to President Obama asking him to address a Joint Session of Congress.聽 On September 9, President Obama has a speech planned to lay out a more detailed health care reform plan before a joint session of Congress.聽 […]
Harvey Gates, Jr. will be missed by the HFA Team.聽 Harvey spent the entire summer as an intern with HFA.聽 As a community member with hemophilia, Harvey realizes the importance of supporting community organizations.聽 Harvey completed multiple projects聽 and expressed enthusiasm while working for HFA this summer.聽 We wish him well as he heads back […]
September is here and Congress is back in session next week.聽 There are still many unanswered health reform questions.聽 Last week, the Kaiser Health Network reported on Senator Chuck Grassley’s view of next steps; “If town meetings are going to mean anything, if democracy is going to mean anything, then you listen to your people […]
Young leaders are instrumental to the future of the bleeding disorders community.聽 Students and young adults have a VOICE and an important story to tell.聽 Furthermore, they want to be involved and advocate for the bleeding disorders community.聽 In response to those needs, the HFA Team has launched web space on the HFA website to […]
In 2004, local community groups placed a constitutional amendment on the ballot creating a right to “healthcare for all.” Massachusetts election law requires constitutional amendments be approved by the voters and the legislature twice in two successive elections. Both the legislature and voters approved the measure in ’04. But in 2006, Governor Romney, at the […]
Coal miners use to rely on canaries to let them know when an unhealthy level of gases had built up. The canary would end up meeting an untimely demise, but more often than not, the accompanying miner would end up getting out safely. Over time the idea of the coal miner has become romanticized, complete […]
Senator Edward “Ted” Kennedy, spent 9-terms (40-plus years) in the Senate.聽 He will be laid to rest on Saturday, August 29, 2009 at Arlington National Cemetery.聽 He was one of the most outspoken and effective members of the Senate.聽 He has been a long term proponent of health care reform and has a lengthy record […]
When a patient fills a prescription at a major pharmacy, a record of that prescription (minus the patient name) is sold to companies – so-called health information organizations – that pool information from multiple pharmacies. The bundled information is combined with individual physician identities purchased from the American Medical Association to create prescriber profiles (name, […]
I have an admission. I am not particularly proud of myself, but I got a D- in High School Biology. Normally, I wouldn’t share something this personal in this space, but I do so to illustrate a point. In High School, I couldn’t look at the model of the double helix in class without thinking […]
Check聽out the video of community members Nathan and Sonji Wilkes, interviewed聽by聽Dr. 聽Nancy on MSNBC today!
In 2008, New York took an active approach to increasing the use of palliative care by educating health care professionals about this form of care and its potential benefits passing Senate Bill 2108. SB 2108 provided $4.5 million in grants from the state’s public health budget to recruit faculty for and develop programs in health […]
Nathan Wilkes and his family have truly inspired聽the community to share their stories and let their VOICES be heard.聽 To read聽Nathan’s entire introduction on August 15, 2009聽CLICK HERE.
Nathan Wilkes, a bleeding disorders community member, 聽had the opportunity to introduce President OBAMA today at a townhall meeting in Grand Junction, CO.聽 Before the introduction, he聽highlighted how his 6-year old son with hemophilia nearly reached the lifetime insurance cap.聽 He聽emphasized his family’s concerns with聽health insurance coverage.聽聽HFA is excited Nathan had the opportunity to聽represent the […]
Last week, New York Gov. David A. Paterson has signed into law a series of health reform efforts, including: extending coverage to those who are uninsured and 29 or younger and increasing the age of a dependent to 29. In signing the bills, Paterson said “the reforms will make health insurance more affordable for New […]
Town hall meetings across the United States have gotten out of control.聽 Fights, yelling, tombstones with names of Congress members, and vulgar posters are the norm.聽 Members of Congress are in fear of their lives.聽 Some have opted for “tele-town hall meetings” instead. What happened to civil meetings with dialogue between Congress members and their […]
HHS Secretary Kathleen Sebelius and top HHS officials plan to discuss reform of the health insurance system Friday at 1pm.聽 To watch the webcast, click here.
Much of the action on health care continues to occur at state and local levels, with support from the federal government and national and local philanthropies. Many states begin by forming a commission to develop an action plan for HIT and, most significantly, bring together the various interested parties. Since 2005, almost one-third (17) of […]
Several national patient organizations representing the Alpha-1 antitipsin, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Guillain-Barre, hemophilia, platelet disorders, primary immunodeficiency diseases and other rare disease communities have formed a group to address the unique needs of users of “plasma protein therapies” (plasma derived and recombinant therapies). To address the uniqueness of PUC’s membership, the group developed […]
This afternoon, the Hemophilia Standards of Care Act passed in the Pennsylvania House of Representatives by a vote of 197-0.The bipartisan nature of this vote underlies the import of this legislation. In winning on the floor, the community withstood enormous pressure from Pennsylvania Insurance lobby and the business community. The legislation now moves on to […]
Sign up for E-mails, Dateline Magazine, and other ways to stay connected.