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Health Care Reform Update: Lifetime & Annual Limits

January 8, 2010

The Senate passed the Patient Protection and Affordable Care Act on December 24, 2009, but work still remains for both chambers of Congress. Thursday, over 100 House Democrats held a teleconference to strategize on health care reform.  Congress will return next week and debate will continue on various areas of both bills.   Both chambers will […]

Call your Senators!

January 8, 2010

Stand Up for Health Care, a Families USA project has a toll-free number available for anyone to call and thank their Senator for passing the Patient Protection and Affordable Care Act!  You can find out how your Senator voted by visiting: http://www.senate.gov/legislative/LIS/roll_call_lists/roll_call_vote_cfm.cfm?congress=111&session=1&vote=00396 For more information and the toll-free number, please visit: http://www.standupforhealthcare.org/pages/call_your_senators

Re-importation and Data Mining tossed from HC reform bill

December 22, 2009

HFA has addressed datamining practices in this space on multiple occasions. Most of these efforts have come from state officials. An effort to address datamining Federally was included in the Healthcare Reform package in the Senate. As the healthcare package moves towards Senate passage, the Senate leadership has decided to not include it in their version […]

Bayer is now accepting internship applications for the 2010 Bayer Hemophilia Leadership Development Program

December 22, 2009

The Bayer Hemophilia Leadership Development Program was developed with input from several members of the hemophilia community who saw a need for a program to develop future leaders in the bleeding disorders community. With their support, Bayer HealthCare Pharmaceuticals created an eight-week, paid summer internship at Bayer HealthCare’s U.S. Headquarters in Wayne, New Jersey. During […]

TAKE ACTION TODAY

December 22, 2009

Amy Maeder is a mother of two teenagers with severe hemophilia.  Amy is very passionate about improving the lives of her sons and the bleeding disorders community.  Amy, along with HFA encourages you to TAKE ACTION! Call or write your person in congress TODAY!

Any Port In A Storm

December 19, 2009

The Cleghorn family shares their story of having a young child with hemophilia.  They talk about prophylaxis treatment and transitioning from a portacath to to a vein.

HFA’s VOICES Campaign: VOICES from the Community

December 18, 2009

What do the Cleghorn’s, Laveane Lovelady, and Barry Haarde have in common?  Their stories are featured on HFA’s VOICES page.  The Cleghorn’s video clip highlights their son’s life from the very beginning.  Barry shares a story that many Blood Brothers could relate to.  Laveane talks about being diagnosed with mild Hemophilia A after the birth […]

Rare Disease Day 2010

December 18, 2009

By Michelle Pascucci Rare Disease Day in the United States began in 2009 and the plans for Rare Disease Day in 2010 are taking off.  The National Organization for Rare Disorders (NORD) has launched a website to follow the events going on around the world on February 28, 2010.  The goal is to raise awareness […]

Kakkis Every Life Foundation Art Contest

December 18, 2009

By Michelle Pascucci The Kakkis Every Life Foundation is having an art contest for individuals living with rare disorders.  The goal is “to empower artists affected by Rare Diseases to express their unique struggle with a rare disease.” Two Visa gift cards per age group and a Flip Video camera will be given away.  This […]

NORD’s Politico advertisement on ending lifetime and annual caps

December 14, 2009

The National Organization for Rare Disorders (NORD) ran an advertisement today featuring President Obama’s promise to “prohibit insurers from imposing lifetime limits on benefits and restrict the use of annual limits.”  HFA has received a number of inquiries concerning the “annual limits” language proposed in the Senate health care reform bill.  Ambiguity in the proposed language has prompted […]

All crossed up

December 13, 2009

The Hemophilia Federation of America was contacted this week by the staff at the National AFL-CIO about an ongoing labor issue. About 100 employees at the American Red Cross’ division of Blood Services in and around Philadelphia are on strike. The majority of these workers drive the bloodmobiles the American Red Cross uses to support […]

Health Care Reform Update: The New Deal, Drug Re-importation and Annual Limits

December 11, 2009

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.  This week, the new Senate “gang of 10” (liberal and moderate Democrats) discussed an alternative solution in place of the public option.  The proposal expands Medicare for uninsured […]

Press Release: HFA Voices Blood Safety Concerns

December 11, 2009

FOR IMMEDIATE RELEASE:   December 10, 2009 Washington, DC:  The Hemophilia Federation of America (HFA) expresses its concern regarding the ongoing labor issues involving the Teamsters Local 929 and the American Red Cross of Pennsylvania /New Jersey. The national blood system depends on skilled workers to provide clean, safe blood to laboratories. The blood is distilled […]

Press Release: HFA Recently Approved for NORD Membership

December 10, 2009

FOR IMMEDIATE RELEASE:    December 10, 2009 Washington, DC:  The National Organization for Rare Disorders (NORD) recently approved the Hemophilia Federation of America (HFA)for membership.  One of 150 member organizations, the HFA is excited about the opportunity to participate with NORD on important public policy, advocacy, awareness and educational issues.  Certain standards and requirements must be met […]

Community member Corey Dubin cited in the New York Times regarding blood plasma

December 9, 2009

Community Member Corey Dubin is cited in the NY Times regarding blood plasma

Octapharma USA Announces FDA Approval of wilate(R) – the First Replacement Therapy Developed Specifically for von Willebrand Dis

December 8, 2009

Octapharma USA Announces FDA Approval of wilate(R) – the First Replacement Therapy Developed Specifically for von Willebrand Disease  Milestone Marks Swiss Company’s Entrance into the U.S. Blood Coagulation Market HOBOKEN, N.J., Dec. 7 /PRNewswire/ — Octapharma USA today announced the U.S. Food and Drug Administration has approved wilate® for the treatment of spontaneous and trauma-induced […]

Rolling Snake-Eyes

December 2, 2009

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  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, a True Blood Brother

December 1, 2009

Barry has hemophilia, HIV, and hepatitis C.  He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life.  Barry hopes by sharing his story he will empower others to share theirs.

The WFH receives the largest humanitarian aid donation in its history

December 1, 2009

NEWS RELEASE:   Donation represents more than 40 million international units to the WFH  (Montreal, December 2, 2009): As part of its continued commitment to hemophilia care around the world, Wyeth, now a part of Pfizer, has pledged more than  40 million international units (IUs) of factor concentrates to the World Federation of Hemophilia (WFH). This […]

Barry, A True Blood Brother

December 1, 2009

Barry has hemophilia, HIV, and hepatitis C.  He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life.  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.  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

 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) —   On August 5, 2009, two BioRx employees, Jeff Salantai and Eric Hill, began hiking to the summit of Mt. Rainier.  They successfully reached the 14,410-foot summit on August 6.   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.  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.  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.  […]

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 (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!  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.  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.    The unemployment rate for people with disabilities was reported at 16.2 percent in September 2009.  Loss of a job can impede access to health care and treatment thereby having a negative impact on someone with a bleeding […]


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