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News & Perspectives

Barry, A True Blood Brother

December 1, 2009

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.

Several states plan to push for more Regulation of Pharmacy Benefit Managers (PBM’s)

November 23, 2009

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 […]

Living With A Bleeding Disorder

November 21, 2009

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.

States begin to address medical debt

November 19, 2009

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 […]

Puritan’s Pride: Massachusetts marks first anniversary of prescription drug marketing bill

November 13, 2009

聽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 […]

1st Person with Hemophilia Reaches Mt. Rainier Summit to Raise Money for Inner-city Youth and International Bleeding Disorder Assistance Jeff Salantai

November 10, 2009

News Release Cincinnati, Ohio (November 9, 2009) 鈥 聽 On August 5, 2009, two BioRx employees, Jeff Salantai and Eric Hill, began hiking to the summit of Mt. Rainier.聽 They successfully reached the 14,410-foot summit on August 6.聽聽 Hill says, “We hoped to reach one of the largest peaks in the U.S., and we achieved […]

State Revenues in Freefall

November 10, 2009

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 […]

Update-House health care reform action this weekend

November 6, 2009

“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 […]

Posted: 11/6/2009

November 6, 2009

Guidance for Industry: Use of Nucleic Acid Tests to Reduce the Risk of Transmission of West Nile Virus from Donors of Whole Blood and Blood Components Intended for Transfusion聽(PDF – 68KB)

HFA Poster Abstract recognized at NHF Research Posters Reception

November 6, 2009

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 […]

Unemployment and the bleeding disorders community

November 6, 2009

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 […]

Unintended Consequences

November 3, 2009

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 […]

Community Member, Barbara Dittrich one of 3 semi-finalist for the The Hope Award

October 27, 2009

The Hemophilia Federation of America congratulates and applauds the good works of 聽Barbara Dittrich, Executive Director of聽Snappin’Ministries for becoming one of 3 semi-finalist for the The Hope Award. Barbara started the support group when her son Charlie was born in 2002 with Hempohilia. We wish her all the best with her ministry and look forward […]

Health Care Reform Update

October 23, 2009

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 […]

Pictures of the Forbes’ Family and President Obama

October 23, 2009

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

Aloha means Health Access

October 23, 2009

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

October 22, 2009

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.

Derick Stace-Naughton

October 22, 2009

[vimeo]http://vimeo.com/7055318[/vimeo] 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.

Press Release: HFA HOSTS FIRST ADVOCACY INTENSIVE

October 21, 2009

FOR IMMEDIATE RELEASE:聽聽聽聽 October 20, 2009 聽Washington, DC:聽 The Hemophilia Federation of America (HFA) held its first Advocacy Intensive weekend October 2 – 5, 2009.聽 The program is a best practice model for bringing HFA social advocacy programs full circle and encouraging members of the bleeding disorders community to reach their聽 full potential through role […]

HFA’s 2010 State Legislative Agenda

October 20, 2009

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 […]

John

October 20, 2009

“One Man’s Story” By John Jarratt, M. Ed., L.P.C. Download John’s Story It is my hope that the new millennium will bring about a better understanding of hemophilia and bleeding disorders, along with an improved relationship and collaboration with consumers, chapters, foundations, hemophilia treatment centers, clinics, private practitioners, emergency room personnel, national organizations, and industry. […]

Laveane

October 20, 2009

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 […]

Barry

October 20, 2009

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 […]

Rick

October 20, 2009

Download Rick’s Story By Rick, Jessie’s Dad My son Jesse was born on Valentine’s Day in 2001. He is now 4 years old and has severe hemophilia. It is hard to believe the amount of emotions that have transpired in the short period since his birth. Life leads us down many paths. The path of […]

Leland

October 20, 2009

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.

Feds: No more arrests for pot-smoking patients

October 19, 2009

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, […]

Starting from zero

October 18, 2009

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 […]

2010 State Legislative Preview: New York

October 18, 2009

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 […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

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 […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

FOR IMMEDIATE RELEASE: October 16, 2009 Washington, DC:聽 聽Imagine having the opportunity to visit the Oval Office and meet the President of the United States.聽 This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his […]


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