Donate

Advocacy News

Medicaid Expansion in Your State

April 18, 2013

聽 The Medicaid program is a federal and state partnership to provide health insurance for those who are financially and medically needy. It is a vital safety net in our health care system. Federal law sets a baseline of eligibility categories for states to follow, but states have the flexibility to cover above that baseline […]

Affording to Bleed

March 20, 2013

I think we can all agree that factor is an expensive drug. The Explanation of Benefits (EOB’s) that arrive in the mail each month are horrifying to look at. The ones we get are on the far end of the “oh-my-goodness-that’s-a-lot-of-money” spectrum. And those are just the ones that include Thomas’s factor supply for scheduled […]

The Truth About Advocacy

February 27, 2013

              Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the […]

White House Petition: Help Save Lives of Millions With Hepatitis C

February 18, 2013

Dear Friends, We need your help in order to get this cure for Hepatitis C. 路 Over 170 million people worldwide have Hepatitis C (HCV) 路 Hepatitis C now kills more people than AIDS 路 Hepatitis C is now the leading reason for liver transplants The cure was developed by two drug companies together, but […]

Flexing Your Online Advocacy Muscle

February 6, 2013

In the early 1980s, when universities and the government were working together to expand the Advanced Research Projects Agency Network (ARPANet), an early version of the Internet, the Massachusetts Institute of Technology issued this warning to users: 鈥淪ending electronic mail over the ARPANet for . . . political purposes is both anti-social and illegal.聽 By […]

2012 Election Results Will Have Long-term Effect on the Bleeding Disorder Community

November 9, 2012

Link聽to PDF of聽HFA Reacts to 2012 Election Washington, D.C. – This week, President Obama was re-elected as the 44th President of the United States; in Congress the balance of power remained the same as pre -election: Democrats in control of the Senate and the House led by Republicans.聽 On the state level, elections were held […]

HFA Welcomes New England Hemophilia Association As a Member Organization

August 23, 2012

PDF of聽HFA Welcomes New England Hemophilia Association As a Member Organization Washington, D.C. — 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 the New England Hemophilia Association (NEHA) as its newest member organization.聽 NEHA […]

Press Release: HFA Reacts to Supreme Court Ruling on Affordable Care Act

June 29, 2012

HFA Reacts to Supreme Court Ruling on Affordable Care Act Ruling will have Long-term Effect on the Bleeding Disorder Community聽 FOR IMMEDIATE RELEASE: June 28, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of HFA聽Reacts to Supreme Court Ruling聽 Washington, D.C. – In a 5-4 vote, the United States Supreme Court today released its much-anticipated […]

Press Release: HFA Reacts to Supreme Court Ruling on Affordable Care Act

June 28, 2012

HFA Reacts to Supreme Court Ruling on Affordable Care Act Ruling will have Long-term Effect on the Bleeding Disorder Community聽 FOR IMMEDIATE RELEASE: June 28, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of HFA聽Reacts to Supreme Court Ruling聽 Washington, D.C. – In a 5-4 vote, the United States Supreme Court today released its much-anticipated […]

Largest health insurer to keep key parts of law regardless of court ruling

June 11, 2012

Largest health insurer to keep key parts of law regardless of court ruling from the Washington Post:聽http://www.washingtonpost.com/national/health-science/largest-health-insurer-to-keep-key-parts-of-law-regardless-of-court-ruling/2012/06/10/gJQA7VYfTV_story.html?tid=pm_pop By N.C. Aizenman,聽Monday, June聽11,聽12:11聽AM The nation’s largest health insurer will keep in place several key consumer provisions mandated by the聽2010 health-care law聽regardless of whether the statute survives Supreme Court review. Officials at UnitedHealthcare will announce Monday that whatever […]

Community Pharmacists Lose Bid to Immediately Block Express Scripts-Medco Deal

April 27, 2012

By Rebecca Adams, CQ HealthBeat Associate Editor A federal judge has denied the request of a group of community pharmacists to immediately stop the acquisition of Medco Health Solutions by Express Scripts, Inc. The judge will next decide whether to throw out the lawsuit. The pharmaceutical benefits management companies Express Scripts and Medco merged on […]

According To Us — Hemophilia Teen Connection Video

April 24, 2012

What is hemophilia? While at HFA Symposium 2012 the Teen Connection program created this educational video about hemophilia and other bleeding disorders.

Press Release: Families Throughout the U.S. Celebrate World Hemophilia Day

April 17, 2012

Families Throughout the U.S. Celebrate World Hemophilia Day FOR IMMEDIATE RELEASE: April 12, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of聽World Hemophilia Day聽 Washington, DC– Today, Tuesday, April 17, tens of thousands of families across our nation and around the world are celebrating World Hemophilia Day to raise awareness of bleeding disorders. “World Hemophilia […]

Press Release: HFA Elects New Executive Board During Symposium

April 12, 2012

HFA Elects New Executive Board During Symposium FOR IMMEDIATE RELEASE: April 12, 2012 Contact: Richard Pezzillo (202)-675-6984聽r.pezzillo@hemophiliafed.org Link to PDF of HFA Elects New Executive Board Washington, D.C. – During their recent annual Symposium in Santa Clara, California, the Hemophilia Federation of America’s (HFA) Board of Directors named Matthew T. Compton as the new board […]

The Wilkes Family, “Thanks ObamaCare”

April 9, 2012

My son Thomas was born in 2003. After his circumcision, he continued to bleed. Within a day, my husband Nathan and I were told that our newborn son had severe hemophilia, a genetic blood clotting disorder. A local hematologist was at our bedside within 30 minutes of us getting the call. She was there to […]

HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men

March 16, 2012

By Jane Norman, CQ HealthBeat Associate Editor The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had […]

How to Live Well With Chronic Pain: Steps You Can Take Today

March 15, 2012

From the American Pain Foundation: By Rebecca Rengo-Kocher, MA, MSW, LCSW, ACSW It’s easy to feel overwhelmed when you live with chronic pain. Every day life can be a struggle, seemingly impossible to overcome. You push yourself with every ounce of energy right down to your soul, and it feels like nothing’s there. Simple activities […]

Prese Release: March is Hemophilia Awareness Month

March 12, 2012

Link to PDF of Hemophilia Awareness Month Press Release FOR IMMEDIATE RELEASE March 12, 2012 HFA Celebrates National Hemophilia Awareness Month March is Designated to Create Public Awareness about Bleeding Disorders Washington, D.C. – In 1986, President Ronald Regan designated the month of March as Hemophilia Awareness Month to bring awareness and attention to those […]

Forbes: The 10 Most Expensive Common Medical Conditions

February 25, 2012

Over the course of a year two out of every 1,000 people will rack up $100,000 or more in medical bills. These are the 鈥渉igh cost patients鈥 who make insurance premiums go up and bedevil policy makers. These are people who are really sick. The conventional wisdom is that with better prevention, wellness, care-coordination, insurance […]

Insurers Now Required to Use Plain Language in Describing Health Plan Benefits, Coverage

February 24, 2012

New rules published jointly by the Departments of Health and Human Services, Labor and Treasury, require health insurers and group health plans to provide concise and comprehensible information about health plan benefits and coverage to the millions of Americans with private health coverage.聽 The new rules will also make it easier for people and employers […]

Rare Disease Day

February 8, 2012

Celebrate Rare Disease Day on February 29th 2012! HFA is a proud partner of NORD, the National Organization for Rare Disorders.

Andy Matthews: Training Ground

January 21, 2012

Growing up with hemophilia, Andy Matthews was lucky enough to live across the street from a hematologist. The doctor told his parents the best thing they could do for Andy was give him cryoprecipitate treatments at home. Cryoprecipitate was an early version of today’s factor treatments, using human plasma to treat clotting disorders. Andy was […]

U.S. Department of Health and Human Services releases Essential Health Benefits Bulletin

January 6, 2012

On Monday, Dec. 16, the U.S. Department of Health and Human Services (HHS) released a bulletin outlining guidance to states on implementing Essential Health Benefits (EHBs). 聽As you may recall, the Affordable Care Act will require individuals to have insurance coverage by 2014.聽 Individuals and business may purchase health insurance in a state based “health […]

Medicare Enrollment Period Ends December 7, 2011

December 2, 2011

Medicare annual open enrollment ends in less than 1 week. 聽Medicare beneficiaries who do not have a Part D plan can enroll in one, and those who do have Part D coverage can change plans.聽 Beneficiaries can also return to traditional Medicare from a Medicare Advantage (MA) plan, enroll in an MA plan, or change […]

Chinese Firms Linked to Tainted Heparin Still Supplying U.S.

October 28, 2011

By Anna Edney Courtesy of Bloomberg News Oct. 26 (Bloomberg) — Two Chinese companies implicated in supplying contaminated ingredients three years ago to Baxter International Inc. for its blood thinner heparin are still supplying product to the U.S., Republican lawmakers said. Baxter recalled the blood thinner in 2008 amid reports of deaths and allergic reactions. […]

Does your child have a school nurse?

September 15, 2011

(CNN)聽— As a school nurse in Rochester, Michigan, Ronda Harrison has more than 15,000 students in 23 buildings under her care. She works out of the district’s administrative offices and spends her days giving PowerPoint presentations to educators and communicating with parents over the phone. “[It is] scary the fact that I’m responsible for so […]

Medicare Open Enrollment Begins October 15th This Year

September 14, 2011

From the Medicare Rights Center: Did you know that there are new dates to remember for Medicare’s Fall Open Enrollment Period? Starting in 2011, Fall Open Enrollment (also known as the Annual Coordinated Election Period, or ACEP) begins on October 15 and lasts through December 7. During this period, people with Medicare have the right […]

Understanding the Debt Ceiling and the “Super Committee”

September 9, 2011

In early August the President signed into law the Budget Control Act of 2011, which is reported to save approximately $917 billion over the next ten years and will raise the debt ceiling by $900 billion, therefore carrying the government through the end of 2011. The bill also establishes a new joint Congressional committee that […]

Drug Companies May Face Uphill Battle on Passage of FDA Review Funding

September 5, 2011

CQ TODAY ONLINE NEWS – HEALTH Sept. 2, 2011 – 8:17 p.m. By Emily Ethridge, CQ Staff The pharmaceutical industry continues to push lawmakers to act quickly on approving a deal that would fund the Food and Drug Administration’s drug review process. But, although lawmakers from both parties have pledged to mark up the legislation […]

Medical mystery: UMass doctors race to counter rare blood disorder

September 2, 2011

By Geraldine A. Collier Courtesy of Worchester Telegram & Gazette Doctors are taught in medical training to “look first for the horses, not the zebras.”聽 In other words, look first for the typical causes of symptoms before exploring more exotic possibilities.聽But, former Worcester School Superintendent John Durkin wouldn’t be alive today if his doctors at […]


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.