Advocacy News

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’ […]

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!

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 […]


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!

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 […]

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聽聽 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. 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 […]

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 […]

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 […]

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 […]

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