Advocacy News

Welcoming Our New Policy Interns

June 16, 2014

Earlier this year we opened applications for an eight week policy & advocacy internship* for this summer. We are excited to introduce you to the two candidates that we selected! Lewis and Maria are part of the bleeding disorders and have been chosen 聽because of their leadership qualities and interest in the field of policy […]

We Did Not Fail Treatment, It Failed Us

May 20, 2014

  When my son Matthew was born with severe Hemophilia A in 1994, I thought I was prepared. I had been raised by a Dad with hemophilia, lost him to HIV in 1986, and had thoroughly researched product safety prior to deciding to give birth to my son. I had prenatal testing done and knew […]

Recognizing National Hepatitis Awareness Month

May 1, 2014

In 2001, the Centers for Disease Control (CDC) and Prevention designated the month of May as Hepatitis Awareness Month to bring awareness and attention to those living with viral hepatitis. In the 1980s and 1990s thousands of people with hemophilia contracted HIV and Hepatitis C (HCV) from the contaminated blood supply transmitted by clotting factor […]

PSI: CMS Final Rule On Ryan White Premium Assistance & Other State/Federal Programs

March 15, 2014

The Centers for Medicare and Medicaid Services (CMS) has posted an interim final rule (IFR) with comment period requiring Qualified Health Plans (QHPs) to 鈥渁ccept premium and cost-sharing payments made on behalf of enrollees by the Ryan White HIV/AIDS Program, other Federal and State government programs that provide premium and cost sharing support for specific […]

Girls Have Hemophilia, Too!

January 7, 2014

My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]

Are You Prepared for the Healthcare Insurance Marketplace?

November 11, 2013

The countdown to the launch of the new online Health Insurance Marketplace is on. Are you ready? If you, like many Americans, have questions about what the Marketplace is and what it does, there are excellent resources available to help answer these questions. Here are some of the most frequently asked questions: The Health Insurance […]

Patient-Focused Drug Development Initiative Update

October 23, 2013

Dear Member Organizations, As you know, the FDA has recently embarked on a new Patient-Focused Drug Development Initiative, which will include convening 20 disease-specific public meetings to hear directly from patients about their perceptions of risk and benefit when it comes to new and existing treatments. FDA selected bleeding disorders as one of the disease […]

HFA Joins Over 900 Organizations In Support of Marketplaces

October 1, 2013

Health and Human Services (HHS) Secretary Kathleen Sebelius today recognized more than 900 Champions for Coverage nationwide. These organizations and businesses have volunteered to help Americans without affordable insurance learn more and get coverage through the Health Insurance Marketplace, which opens for business tomorrow and will give consumers a whole new way to shop and […]

Physician Payment Sunshine Act Sheds Light on Payments Made to Doctors

September 16, 2013

A little-discussed provision of the Affordable Care Act is making physicians, hospitals and manufacturers in the health care industry reconsider how they do business.聽 The Physician Payment Sunshine Act requires certain drug, medical device and biological manufacturers to disclose to the聽Centers for Medicare & Medicaid Services (CMS)聽any payments or other transfers of value to physicians […]

Sneak Peek at Premiums in the Health Insurance Marketplaces

September 12, 2013

A recent聽Avalere Health study聽offers individuals and employers a sneak peek at what the cost of premiums will be once open enrollment for the health insurance marketplaces begins on October 1, 2013.聽聽Avalere Healthused data from the rate filings released by 12 states, including Ohio, New York, and Indiana, to conclude that the marketplaces were producing competitive […]

Study Finds H.R. 460 Will Have Negligible Impact on Insurance Premiums

September 10, 2013

A bill to protect access to medically necessary treatments for patients with chronic, disabling, and life-threatening conditions would not significantly increase medical insurance premiums according to a study released today by the Coalition for Accessible Treatments. The Coalition, composed of professional medical associations and patient organizations, commissioned the study, which was conducted by Avalere Health, […]

Essential Health Benefits: What are they and who decides?

August 26, 2013

As we have discussed in previous posts, beginning in 2014, under the Affordable Care Act (ACA), Medicaid plans and small group and individual plans sold inside and outside of the Health Insurance Marketplace must cover a package of 10 categories of items and services known as Essential Health Benefits (EHBs).聽 These categories include: Ambulatory patient […]

Health Insurance Options in 2014

August 20, 2013

In a recent post, we discussed the insurance mandate itself.聽 That is, the requirement that most people have health insurance beginning in 2014 or face a financial penalty.聽 We also briefly mentioned the insurance options that will be available to you in order to fulfill this requirement.聽 They are鈥 Have employer-sponsored insurance Be covered by […]

Out of Pocket Maximums and the 2014 Transition Year

August 14, 2013

Beginning in 2014, the Affordable Care Act (ACA) will set maximum limits on how much consumers can be required to pay out-of-pocket annually for their health care.聽 Under the law, the maximum amount a consumer with single coverage will pay out-of-pocket will generally be $6,350, while a family could pay up to $12,700. In 2015, […]

Hepatitis C: Our History and Advances on the Horizon

August 8, 2013

Recognizing National Hepatitis Awareness Month The month of May is recognized to bring awareness around those living with viral hepatitis. The awareness effort encourages people to get tested for hepatitis and to evaluate treatment options. According to the Centers for Disease Control and Prevention (CDC), an estimated 3.2 million people in the U.S. with chronic […]

Committee of Ten Thousand (COTT) Announces Staff Changes

April 4, 2013

On Thursday February 28, 2013, the end of an era at the Committee of Ten Thousand occurred as National Government Relations Coordinator, friend, adviser and superb DC staff Dave Cavenaugh clocked his last day as the Government Relations Coordinator. After fifteen years of excellent, continuous service he had decided to step down. Dave has become […]

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 […]

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 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 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 […]

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 […]

Living with Hepatitis C

July 1, 2011

Mark Antell talks candidly about his hemophilia and hepatitis C.

Health Insurance Exchange Regulation Due Out July 7

June 29, 2011

CQ HEALTHBEAT NEWS By John Reichard, CQ HealthBeat Editor   The Obama administration plans to release its proposed regulation on state health insurance exchanges July 7. The rules governing the establishment of the exchanges, which under the health care overhaul law begin operating in 2014, are much anticipated by state lawmakers, insurers, employers and consumers. […]

The Importance of Comprehensive Care

June 3, 2011

Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.

Family Focused

May 28, 2011

Kelly Champagne talks about the painful accusations that lead to her son being diagnosed with severe hemophilia. At the time her son Micah was diagnosed she could not see light at the end of the tunnel but has now learned to manage his disorder.

Martin Addie: Advancements In Treatment

May 27, 2011

Martin shares how the advancements in treatment for his severe hemophilia has affected his life. Martin went from missing 100 days of school his freshman year of high school to only missing聽 8 days his sophomore year because hemophilia medication was made available to use at home and he no longer had to go to […]

Hatch, Camp Demand More Information on Waiver Denials From HHS

May 26, 2011

CQ HEALTHBEAT NEWS May 25, 2011 – 4:17 p.m. By Jane Norman, CQ HealthBeat Associate Editor   Two Republicans have written Health and Human Services Secretary聽Kathleen Sebelius聽saying there has not been enough transparency when it comes to waivers from the health care law the agency has granted to companies, labor unions and other groups. House […]

People with Bleeding Disorders and HCV send letter to FDA Commissioner

May 25, 2011

HFA recognizes and supports efforts to further the development and availability of promising HCV therapies for the bleeding disorders community. Click here to read the recent letter to FDA Commissioner, Dr. Margaret Hamburg. Click here to read the MASAC Recommendations for Treatment of Chronic HCV Infection.

State Legislators Tussle Over Health Benefit Exchanges as Adjournments Near

May 18, 2011

CQ HEALTHBEAT NEWS May 18, 2011 By Jane Norman, CQ HealthBeat Associate Editor As state legislatures near the end of their sessions, many lawmakers are still struggling with whether to approve measures to set up health-benefits exchanges created under the health care law 鈥 and it appears almost certain work in many states will extend […]

The Man and His Music: John Jarratt

May 17, 2011

John Jarratt is 63 years young! His positive attitude is contagious!

Transitions: The Effects of Health Care Reform on Alex Ell

May 13, 2011

Twenty-three year old Alex Ell was diagnosed with hemophilia at birth.聽 Hemophilia is a rare genetic bleeding disorder that results in excessive bleeding, occurring spontaneously or as a result of an injury. 聽Bleeding episodes cause聽pain and damage to joints, muscles and organs.聽These episodes are treated聽with an聽intravenous infusion of blood clotting products to replace the missing […]

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