Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
The deal to expand Medicare in exchange for eliminating the public option from the Patient Protection and Affordable Care Act has been the source of major controversy.聽 This week, the new Senate “gang of 10” (liberal and moderate Democrats) discussed an alternative solution in place of the public option.聽 The proposal expands Medicare for uninsured […]
Expiration of COBRA Subsidy: Millions of Uninsured Workers and Their Dependents Are at Risk; Many Will Lose Their Subsidy as of December 1, 2009 Courtesy: Families USA聽聽http://www.familiesusa.org/assets/pdfs/expiration-of-cobra-subsidy.pdf Americans who lose (or have already lost) their jobs are about to be dealt another blow: the expiration of the subsidy that allowed many of them to retain […]
Barry has hemophilia, HIV, and hepatitis C. 聽He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life. 聽Barry hopes by sharing his story he will empower others to share theirs.
With increased pressure on medical costs, many states have chosen to rely on PBM’s to help administer prescription drug benefits for state’s Medicaid and Medicare programs. A controversial issue in that cost goes down, but access and product choice are also severely limited. If cost is the only concern, then well regulated PBM’s can be […]
Features: Terry Lamb, Karl Weixler, Tera Griffith & Tye Cowans.聽 These four individuals share what life is like being a part of the bleeding disorders community.
Paying for health care is becoming increasingly difficult for American families. Fewer workers are receiving health coverage through their jobs, and those who do have job-based coverage face rising out-of-pocket costs. Not surprisingly, more families are going into debt trying to pay for the health care they need. The health reform proposals that are currently […]
A year after the Bay state became the first place in this country to pass a comprehensive bill addressing prescription drug marketing, the commonwealth is taking stock. The bill’s impact cannot be understated for its impact on industry. Two major trade organizations, PhRMA and AdvoMed, the people who sell prescription drugs and medical devices have […]
The 2010 fiscal year continue to provide lawmakers with reason to reach for the budget ax. As such, a whole host of state access and treatment programs remain very much on the chopping block.聽 Throughout the recession state revenue collections have consistently underperformed expectations. The decline has been steep and unrelenting. Even pessimistic forecasts have […]
“High risk pools and reinsurance will take care of people with pre-existing conditions,” according to Marsha Blackburn, a four-term Congresswoman from Tennessee.聽 A 219-page amendment, referred to as the GOP Healthcare Reform bill will be introduced and offered as an amendment tomorrow on the House floor during a controversial vote that will begin Saturday morning.聽 […]
Kudos to Axel Freese, Online Coordinator and Michelle Burg, Program Director who both lead HFA’s Blood Brotherhood Program across the country!聽 Their hard work and the work of 8 local Blood Brotherhood sites was recognized at the NHF’s Research Poster Reception on October 30, 2009 during the Annual Conference.聽 The poster abstract highlights the impact […]
At 10.2 percent last month, the unemployment rate in the United States is the highest since 1983.聽 聽 The unemployment rate for people with disabilities was reported at 16.2 percent in September 2009.聽 Loss of a job can impede access to health care and treatment thereby having a negative impact on someone with a bleeding […]
In politics, we often hear people talk about unintended consequences. In fixing one problem, we sometimes lay the seeds of the next one. Consider what has happened in Maine. This past spring, the Maine Legislature passed a bill addressing drug marketing practices to minors. The measure, passed with lots of fanfare from consumer protection advocates […]
Congress continues to work towards a “fix” to the broken health care system.聽 In a statement today, House Majority Leader Steny Hoyer has indicated that every effort will be made to complete reform by December 18, 2009.聽 The House is currently working to merge the three bills into one complete bill.聽 Earlier this week, Speaker […]
In an earlier blog and HFA Press Release, the Forbes’ family meeting with President Obama was highlighted.聽 Please see the pictures below of their meeting with the President.聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽 聽
When somebody mentions Hawaii… visions of white sand beaches and volcanoes come to mind. What doesn’t come to mind is Hawaii’s healthcare services. Off the radar screen, the state has quietly assembled healthcare institutions that seem to be delivering Hawaiians good care at a reasonable price. People on the mainland are starting to notice. This […]
Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.
HFA is proud to release its 2010 State Legislative Agenda. This list has been compiled after consultation with members of the Federation’s Advocacy and Executive Committees. Our intention is to create a central clearinghouse for legislative proposals which we believe are of interest to segments of the bleeding disorders community. The policy clearinghouse features a […]
By Laveane Lovelady, Damascus, AR Download Laveane’s Story This story is about me, but it all started when my son Ryan was born August 15, 1989. It was after his birth when I was finally diagnosed with mild Hemophilia A, because he was diagnosed with severe Hemophilia A. My blood pressure had gotten dangerously high […]
The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]
Leland is a teenager with hemophilia and an inhibitor who is concerned with lifetime caps and how they affect his future in the bleeding disorders community.
New guidelines will apply in 14 states allowing medical use of marijuana Pot-smoking patients or their sanctioned suppliers should not be targeted for federal prosecution in states that allow medical marijuana, prosecutors were told Monday in a new policy memo issued by the Justice Department. Under the policy spelled out in a three-page legal memo, […]
If you could start from scratch, what kind of system would you design to serve the bleeding disorders community?Would you change the way you receive medical attention? Are you happy with the way product arrives at your home? What might you keep? What would you ditch? The State of Connecticut is beginning to have a […]
NEW YORK BLEEDING DISORDERS COMMUNITY聽MAXIMIZING FORWARD MOMENTUM Despite a Senate Coup, weeks of political gridlock and the normal parlor intrigue which punctuates New York State Politics — Knickerbockers are looking to build on growing momentum out of the 2009 Legislative session in Albany in the New Year. The past year saw legislation enacted which extended […]
HFA is excited to announce that the Forbes’, a family from Upland, California had an opportunity to sit down and talk with President Obama in the Oval Office, Monday, September 14.聽 To read about their experience please visit the Community News Section of the HFA website and click:聽 Advocates in Action: The Forbes’ Family Meets […]
By: Michelle Pascucci Nathan Wilkes was asked to testify before the Committee on Energy and Commerce’s Subcommittee on Oversight and Investigations on October 15, 2009.聽 The hearing was called “Insured But Not Covered: The Problem of Underinsurance.”聽 It is a very poignant title because many people in the bleeding disorders community face issues with their […]
Congressman Patrick Kennedy and Congresswoman Cathy McMorris Rodgers would like to expedite elimination of lifetime caps in H.R. 3200.聽 They are circulating a letter to their Colleagues in Congress to ensure this happens.聽 The letter will be sent to Speaker of the House Nancy Pelosi.聽 The Lifetime Caps Coalition is asking that you call your […]
The notwithstanding clause of Canada’s Charter of Fundamental Rights and Freedoms is one of the more peculiar tools of federalism.聽聽It doesn’t really exist as a matter of law in the States. The charter is roughly the same as our聽Bill of Rights. Up north, the individual provinces can opt out (or in) to certain constitutional provisions. […]
The Keystone State continues to address passage of its Treatment Standards bill. The State House passed its version of the measure 197-0. The bill remains mired in the Senate where the state Republicans hold sway. 2010 looks to focus on moving the measure further on down the legislative path towards Governor Rendell’s desk. Rendell has […]
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” –Margaret Mead I found myself looking around for this quote online this morning. I was truly fortunate to have shared this past weekend with a handful of young men all in their […]
Released October 7, the CBO score of America’s Healthy Future Act of 2009聽outlines the cost of Chairman Max Baucus’ controversial bill.聽 Chairman Baucus believes “This legislation is a smart investment on the federal balance sheet, and it’s an even smarter investment for American families, businesses and our economy.”聽 The Senate Finance Committee will hold an […]
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