News & Perspectives

HFA Welcomes Three New Member Organizations

October 12, 2010

FOR IMMEDIATE RELEASE:            October 11, 2010 Washington: DC:  Hemophilia Federation of America (HFA), a community focused national organization serving the needs of individuals and families with bleeding disorders since 1994, is pleased to announce the addition of three new member organizations in 2010 as indicated below: The Connecticut Hemophilia Society, Inc. (CHS), founded on February […]

A-PLUS and NORD submit comments on the Pre-existing Condition Insurance Plans (Temporary High Risk Pools)

October 8, 2010

The American Plasma Users Coalition (A-PLUS) and the National Organization for Rare Disorders (NORD) wrote joint comments in response to proposed rules on the PCIP program (temporary high risk pools).  The comments highlight our major concerns which include:  Funding limitations and third party payer prohibitions Eligibility and enrollment limitations Child-only policies The “other criteria” definition […]

Commonwealth Fund webinar on Pre-Existing Condition Insurance Plans focuses on Wisconsin and New Mexico

October 7, 2010

The Commonwealth Fund hosted a webinar on the Affordable Care Act provision on establishing temporary high-risk pools, also called Pre-Existing Condition Insurance Plans (PCIPs). PCIPs are designed to quickly make health insurance available to uninsured individuals with pre-existing conditions, many of whom previously had been denied coverage. PCIPs are a temporary measure until 2014 when the health […]

New York Governor David Paterson signs S. 5000-B into Law!

October 7, 2010

S. 5000-B gives the New York State Insurance Department the authority to deny requests from insurance companies to create specialty drug pricing tiers, also known as Tier IV drug pricing.  These types of tiers have been used by insurance companies in other states to require patients to pay higher co-payments and co-insurance based on the […]

The “YouToons” explain health care reform

October 6, 2010

The Kaiser Family Foundation, a non-profit organization that focuses on health policy issues, recently released a video featuring cartoon characters explaining the new health care law.  In a short 9-minute video, the YouToons explain “problems with the current health care system, the changes that are happening now, and the big changes coming in 2014”.  To […]

Michael Bishop — You Are Not Alone

September 28, 2010

By Michael George Bishop My name is Michael George Bishop and I have Hemophilia B with inhibitors. I decided to share my story with the Hemophilia Federation of America (HFA) and “Voices” because I wanted other kids like me, with hemophilia -and those in physical or emotional pain – to know they are not alone […]

HFA President, Brayshaw Host President Obama in Backyard

September 25, 2010

Washington, DC:  President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw.  Paul, an individual with Hemophilia is a resident of Falls Church, VA. He opened the forum with a statement regarding the positive impact of the Affordable Care Act as it relates to individuals […]

URGENT: Voluntary Market Withdrawal – September 23, 2010 Octagam [Immune Globulin Intravenous (Human)] 5% Liquid Preparation

September 24, 2010

Visit FDA link to learn more: <>

Medical Alert: Shortage of DDAVP IV

September 24, 2010

NHF Medical Advisory #411: September 24, 2010 Shortage of DDAVP IV The Food and Drug Administration has issued a notice that there is currently a shortage of Desmopressin Acetate (DDAVP), Intravenous Formulation, due to increased demand and manufacturing delays. Three pharmaceutical companies currently distribute and market this product in the US.  Hospira reports that it […]

Affordable Care Act at Six Months

September 24, 2010

This week marked the six month anniversary of the passage of the health care reform law. Many events have taken place over the past week to highlight the new law.  We were also reminded of the great need for reform, newly released 2009 Census data shows that 50.7 million individuals went without health insurance this […]

Congressional Black Caucus (CBC) holds 2010 Fall Health Braintrust

September 24, 2010

The 2010 CBC Fall Health Braintrust: “Working Together to Ensure Appropriate Health Care Reform Implementation” highlighted the importance of appropriate implementation of key health care reform provisions in improving the health, health care and wellness of all currently underserved individuals and communities. The Health Braintrust was held during the 2010 Congressional Black Caucus Foundation Annual […]

Center for American Progress Marks Six Month Anniversary of Affordable Care Act

September 24, 2010

The Center for American Progress held a panel discussion of health insurance experts to examine what new consumer protections have already been implemented and what changes the American public can expect in the health insurance market in the very near future. The discussion also underscored the major role the National Association of Insurance Commissioners (NAIC) […]

Stand Up For Healthcare!

September 23, 2010

Hemophilia Federation of America’s Public Policy Director, Kisa Carter was invited by Families USA to participate in a blog series on the Stand Up For Healthcare website that highlights the 6 month signing of the new health law. Other organizations participating in the blog series include: Young Invincibles, Health Access California, Mom’s Rising, National Physicians Alliance, Advocacy […]

HFA President, Paul Brayshaw hosts President Barack Obama’s Backyard Health Care Policy Forum

September 22, 2010

For Immediate Release: Wednesday, September 22, 2010 Washington, DC:  President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw.  Paul, an individual with Hemophilia is a resident of Falls Church, VA. He opened the forum with a statement regarding the positive impact of the Affordable […]

Mathematica Center on Health Care Effectiveness – “Politics and Policy of Comparative Effectiveness: Looking Back, Looking Ahead”

September 10, 2010

On Thursday September 9, the Center on Health Care Effectiveness held its inaugural Issue Form: “Politics and Policy of Comparative Effectiveness: Looking Back, Looking Ahead”  The forum examined: the creation of the new center at Mathematica, what is Comparative Effectiveness Research (CER)  and how health care reform will influence the future of comparative effectiveness in […]

The September 2010 FDA Patient Safety News is now available

September 10, 2010

Click here for the 2010 FDA Patient Safety News

Iowa Pre-existing Conditions Insurance Plan (PCIP) Program’s low enrollment

September 9, 2010

Only 32 people have applied for the Iowa PCIP (temporary high risk pool).  An estimated 34,500 people would qualify for the program that has enough funds to cover approximately 975 Iowans.  Iowa received roughly $35 million in federal funding to pay for the temporary program called HIP-Iowa Fed The PCIP is a temporary program that […]

Kaiser Family Foundation holds forum on Medicare, Healthcare Reform and People with Disabilities

September 9, 2010

On Wednesday September 8, the Kaiser Family Foundation held a forum examining the health care issues facing people with disabilities and the opportunities and challenges presented by the new health care reform law enacted earlier this year.  The discussion explored the changes in health reform that could affect access to affordable health care for people […]

NY Times Looking for Patients to Interview

September 8, 2010

 From: National Association of Rare Disorders (NORD) Re: New York Times article regarding genetic testing and medical records The New York Times has contacted NORD for assistance in identifying patients to interview for a story on medical privacy and, specifically, what should be done when patients say they don’t want results from genetic tests in […]

HFA Webinar: Women with Bleeding Disorders – Advocacy & Legislative Efforts that Impact YOU!

September 3, 2010

The HFA hosted a webinar on Monday August 30 that highlighted advocacy and legislative efforts focused on women and bleeding disorders. During the webinar participants learned how to advocate and raise awareness for individuals with undiagnosed bleeding disorders.  The discussion also highlighted the current standard of care at Hemophilia Treatment Centers (HTCs) across the United States. […]

Novo Nordisk announced the U.S. Food and Drug Administration (FDA) has approved NovoSeven® RT (Coagulation Factor VIIa [Recombinant] Room Temperature Stable) in an 8 mg vial size.

September 2, 2010

Novo Nordisk announced on August 10 that the U.S. Food and Drug Administration (FDA) has approved NovoSeven® RT (Coagulation Factor VIIa [Recombinant] Room Temperature Stable) in an 8 mg vial size, making the hemophilia A or B with inhibitors treatment available in 1, 2, 5 and 8 mg vials. The 8 mg vial allows a rapid initiation […]

So we passed the law, what next? A summary of the regulatory process

August 31, 2010

The federal regulatory or rulemaking process, like the legislative process, can be lengthy and complicated. The rulemaking process is “the process by which federal agencies develop, amend or repeal rules“.(i) Shortly after passage of Public Law 111-148 and 111-152 (the Patient Protection and Affordable Care Act & the Health Care and Education Reconciliation Act), various […]

Kisa’s Weekend Travels: Hemophilia of Indiana Annual Meeting

August 31, 2010

On August 28-29, Hemophilia of Indiana held their annual meeting in Indianapolis.  HFA’s Michelle Burg (Program Director) and Lauren Neybert (Program Coordinator) arrived Friday night to set-up the HFA booth. On Saturday,  the morning agenda began with a new program called, PEN’s Pulse on the Road (POTR) led by Laurie Kelley, President of LA Kelley Communications, Inc., and sponsored by Baxter […]

Novo Nordisk provides a development update on two new investigational drugs for the bleeding disorders community.

August 30, 2010

The company’s ultra fastacting recombinant factor VIIa is progressing to a phase 3 trial after the successful completion of a phase 2 safety, pharmacokinetics and efficacy trial; the phase 3 trial is currently being designed.  A phase 3 trial for the factor XIII drug was recently been completed and showed that, compared to a historic […]

New York City Hemophilia Chapter

August 11, 2010

Click here For the Immediate Release  New York City Hemophilia Chapter Names Glenn Mones Director of Communications New York, NY – August 10, 2010 – The New York City Hemophilia Chapter (NYCHC) has appointed Glenn Mones to the position of Director of Communications, according to chapter President Shari Bender. “We’re thrilled to have Glenn as […]

HFA Adds New Blood Brotherhood Sites

August 10, 2010

FOR IMMEDIATE RELEASE: Monday, August 9, 2010  Washington, DC: The Hemophilia Federation of America (HFA) is pleased to announce the addition of two new Blood Brotherhood sites, Hemophilia Foundation of Northern California (HFNC) and Hemophilia Foundation of Minnesota/Dakotas (HFMD). Other states hosting local community support groups include Tennessee, Texas, North Carolina, Arizona, New York, Illinois, […]

Pfizer Receives FDA Approval for Prefilled Dual-Chamber Syringe for Use in the Treatment of Hemophilia A

August 9, 2010

Pfizer Press Release Pfizer is pleased to announce that the U.S. Food and Drug Administration (FDA) has granted approval for the use of a Prefilled Dual-Chamber Syringe for administration of XYNTHA® Antihemophilic Factor (Recombinant) Plasma/Albumin-Free to hemophilia A patients. XYNTHA is an injectable recombinant factor VIII product previously approved by the FDA for both the […]

BioRx President Phil Rielly Wins Ernst & Young Entrepreneur of the Year® Award

July 28, 2010

(Cincinnati, Ohio)  July 20, 2010 – Philip Rielly, President and Co-founder of specialty pharmacy BioRx LLC,  has received the Ernst & Young Entrepreneur Of The Year® 2010 Award in the Healthcare category in South  Central Ohio and Kentucky.  According to Ernst & Young LLP, the award recognizes outstanding entrepreneurs  who are building and leading dynamic, […]

My Camp Family

July 23, 2010

Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.

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