News & Perspectives

Communicating With Your State Legislator

February 13, 2010

Mark created a Hemophilia Task Force group in Connecticut.聽 This group had state legislators, national non-profit advocates, patients, and hemophilia doctors working together to ensure people with bleeding disorders in CT receive the best care possible.聽 What are you waiting for?! YOU can make a difference in your state too!

Impact of Inaction: Rural America and Healthcare Reform

February 12, 2010

By:聽 Michelle Pascucci The Center for Rural Affairs released a report entitled Why Health Care Reform Can’t Wait: The Benefits of Health Reform for Rural America this week.聽 Families and individuals living in rural communities have a higher rate of chronic disease and are also more likely to have individual policies than people in urban […]

Lawmakers Redraw Bill Aimed at Online Protection of Minors

February 9, 2010

It’s back to the drawing board for proponents of legislation that would prevent the online collection of minors’ health-related information. State Sen. Elizabeth Schneider says her new bill should be ready by the end of the month and will replace a law that was challenged earlier this year in U.S. District Court. Schneider says she wants greater protections for Maine teenagers who […]

Are Personal Health Records making the grade?

February 8, 2010 has just released its first Report Card grading various managers of Personal Health Records. The Full article detailing their report can be found here: Additional Information about Personal Health Information can be found at this link for their Personal Health Record Frequently Asked Question page here: EXCERPT OF ARTICLE: A “PHR” is […]

Web-Based Records Worries Patients, Prompts More Neutral Language

February 1, 2010

Thursday January 28th, 2010 Kaiser Health News Kaiser Permanente’s experience while providing digital records to patients highlights the potential for miscommunications — and sometimes needless alarm, The Huffington Post Investigative Fund reports. The health care company gave patients access to the same online lab reports that went to doctors and they included warning messages, such […]

NORD quoted on lifetime caps issue in New York Times

January 27, 2010

A recent article highlights the impact the lifetime caps language in the pending legislation will have on the rare and chronic disorders community.聽 Michelle Andrews, the article’s author writes about the need to eliminate caps, the cost to policy holders, and provisions in the bills.聽 To read the article please visit:聽 聽

Infusion Set Needles [Manufactured by Nipro for Exelint]: Recall

January 26, 2010

Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets Exel/Exelint “Securetouch+” Safety Huber Infusion Sets Audience: Hospital Risk Managers, Surgical Service personnel FDA notified healthcare professionals of a Class I recall of Exel/Exelint Huber needles, Exel/Exelint Huber Infusion Sets and Exel/Exelint “Securetouch+” Safety Huber Infusion Sets, manufactured by Nipro Medical Corporation for Exelint International Corporation due to […]

Through Thick and Thin

January 26, 2010

Mark and Sasha give us a peek into their lives as a couple dealing with Hemophilia, HIV and hepatitis C.聽 They discuss the importance of community and the value of support from people who understand.

Back to the Basics: FDA’s new web resource

January 18, 2010

Questions like “What is the approval process for a biological product and what does the FDA do?” are answered on the Food and Drug Administration’s (FDA) new “FDA Basics” web page.聽 The FDA created a new web page to assist consumers in understanding the role and function of the FDA.聽 The FDA describes the new […]

Thanks to the Bleeding Disorders Community!

January 18, 2010

HFA would like to thank community members who called their members of Congress to ask they support and sign the “dear colleague” letter on lifetime and annual caps.聽 The following members of Congress have signed the letter: Senators’ Byron Dorgan, Al Franken, Sherrod Brown, Carl Levin, Bob Casey Jr., Kirsten Gillibrand, and Barbara Boxer. Representatives’ […]

340B Prime Vendor Program, managed by Apexus, and the Hemophilia Alliance announced today an innovative collaborative effort to assist participating federally funded hemophilia treatment centers.

January 14, 2010

IRVING, Texas/ Lansdale, Pa (January 14, 2010) – The 340B Prime Vendor Program, managed by Apexus, and聽 the Hemophilia Alliance announced today an innovative collaborative effort to assist participating federally funded hemophilia treatment centers in maximizing the benefits of 340B Drug Pricing Program and Prime Vendor Program discounts.聽 The two organizations are working together to […]

Update: Paying for Health Care Reform

January 14, 2010

During the first week back, lawmakers worked steadily towards a compromise on how to pay for health care.聽 The Senate proposes income taxes on individuals earning more than $500,000 and couples earning above $1 million.聽 The House proposes an excise tax on “Cadillac” plans, employer sponsored plans costing more than $23,000 for a family.聽 Congress […]

Rare Disease Day: Feb. 28th 2010

January 14, 2010

Celebrate Rare Disease Day on February 28th 2010!聽 Write your governor to ask for the last day in February to be proclaimed Rare Disease Day in your state.聽聽 Thank you to NORD, the National Organization for Rare Disorders for organizing this event!

Octapharma Receives Orphan Drug Exclusivity Approval for wilate(R …

January 13, 2010

Octapharma Receives Orphan Drug Exclusivity Approval for wilate(R … FOXBusiness “Orphan drug exclusivity confirms Octapharma’s decision to focus exclusively on the treatment of von Willebrand patients. Wilate has a combination of two … Octapharma Receives Orphan Drug Exclusivity Approval for wilate(R … 聽 聽 聽

Unemployment Rate and Health Insurance

January 8, 2010

An estimated 85,000 people lost jobs in December according to the U.S. Department of Labor.聽 The loss of jobs in December brings the U.S. total to 15.3 million people who are out of work.聽 The impact of job loss to a person or family with bleeding disorders can be significant if they lose access to […]

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.聽 Congress will return next week and debate will continue on various areas of both bills.聽 聽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!聽 You can find out how your Senator voted by visiting: For more information and the toll-free number, please visit:

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聽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 […]


December 22, 2009

Amy Maeder is a mother of two teenagers with severe hemophilia.聽 Amy is very passionate about improving the lives of her sons and the bleeding disorders community.聽 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.聽 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?聽 Their stories are featured on HFA’s VOICES page.聽 The Cleghorn’s video clip highlights their son’s life from the very beginning.聽 Barry shares a story that many Blood Brothers could relate to.聽 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. 聽The National Organization for Rare Disorders (NORD) has launched a website to follow the events going on around the world on February 28, 2010.聽 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.聽 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. 聽This […]

NORD’s Politico advertisement on ending lifetime and annual caps

December 14, 2009

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

Press Release: HFA Voices Blood Safety Concerns

December 11, 2009

FOR IMMEDIATE RELEASE:聽聽 December 10, 2009 Washington, DC: 聽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:聽聽聽聽December 10, 2009 Washington, DC:聽 The National Organization for Rare Disorders (NORD) recently approved the Hemophilia Federation of America (HFA)for membership.聽 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.聽 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

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