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Advocacy News

Derick Stace-Naughton

October 22, 2009

Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.

HFA’s 2010 State Legislative Agenda

October 20, 2009

HFA is proud to release its 2010 State Legislative Agenda. This list has been compiled after consultation with members of the Federation’s Advocacy and Executive Committees. Our intention is to create a central clearinghouse for legislative proposals which we believe are of interest to segments of the bleeding disorders community. The policy clearinghouse features a […]

Laveane

October 20, 2009

By Laveane Lovelady, Damascus, AR Download Laveane’s Story This story is about me, but it all started when my son Ryan was born August 15, 1989. It was after his birth when I was finally diagnosed with mild Hemophilia A, because he was diagnosed with severe Hemophilia A. My blood pressure had gotten dangerously high […]

Barry

October 20, 2009

The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]

Leland

October 20, 2009

Leland is a teenager with hemophilia and an inhibitor who is concerned with lifetime caps and how they affect his future in the bleeding disorders community.

Feds: No more arrests for pot-smoking patients

October 19, 2009

New guidelines will apply in 14 states allowing medical use of marijuana Pot-smoking patients or their sanctioned suppliers should not be targeted for federal prosecution in states that allow medical marijuana, prosecutors were told Monday in a new policy memo issued by the Justice Department. Under the policy spelled out in a three-page legal memo, […]

Starting from zero

October 18, 2009

If you could start from scratch, what kind of system would you design to serve the bleeding disorders community?Would you change the way you receive medical attention? Are you happy with the way product arrives at your home? What might you keep? What would you ditch? The State of Connecticut is beginning to have a […]

2010 State Legislative Preview: New York

October 18, 2009

NEW YORK BLEEDING DISORDERS COMMUNITY聽MAXIMIZING FORWARD MOMENTUM Despite a Senate Coup, weeks of political gridlock and the normal parlor intrigue which punctuates New York State Politics — Knickerbockers are looking to build on growing momentum out of the 2009 Legislative session in Albany in the New Year. The past year saw legislation enacted which extended […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

HFA is excited to announce that the Forbes’, a family from Upland, California had an opportunity to sit down and talk with President Obama in the Oval Office, Monday, September 14.聽 To read about their experience please visit the Community News Section of the HFA website and click:聽 Advocates in Action: The Forbes’ Family Meets […]

Reflections of Nathan Wilkes’ Testimony before the House Subcommittee on Oversight and Investigations

October 16, 2009

By: Michelle Pascucci Nathan Wilkes was asked to testify before the Committee on Energy and Commerce’s Subcommittee on Oversight and Investigations on October 15, 2009.聽 The hearing was called “Insured But Not Covered: The Problem of Underinsurance.”聽 It is a very poignant title because many people in the bleeding disorders community face issues with their […]

Congressmembers Kennedy and McMorris Rodgers want to eliminate lifetime caps immediately

October 16, 2009

Congressman Patrick Kennedy and Congresswoman Cathy McMorris Rodgers would like to expedite elimination of lifetime caps in H.R. 3200.聽 They are circulating a letter to their Colleagues in Congress to ensure this happens.聽 The letter will be sent to Speaker of the House Nancy Pelosi.聽 The Lifetime Caps Coalition is asking that you call your […]

Notwithstanding

October 12, 2009

The notwithstanding clause of Canada’s Charter of Fundamental Rights and Freedoms is one of the more peculiar tools of federalism.聽聽It doesn’t really exist as a matter of law in the States. The charter is roughly the same as our聽Bill of Rights. Up north, the individual provinces can opt out (or in) to certain constitutional provisions. […]

2010 State Legislative Preview: PENNSYLVANIA

October 10, 2009

The Keystone State continues to address passage of its Treatment Standards bill. The State House passed its version of the measure 197-0. The bill remains mired in the Senate where the state Republicans hold sway. 2010 looks to focus on moving the measure further on down the legislative path towards Governor Rendell’s desk. Rendell has […]

Capitol Gains

October 9, 2009

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” –Margaret Mead I found myself looking around for this quote online this morning. I was truly fortunate to have shared this past weekend with a handful of young men all in their […]

It’s only gonna cost $829 billion…

October 8, 2009

Released October 7, the CBO score of America’s Healthy Future Act of 2009聽outlines the cost of Chairman Max Baucus’ controversial bill.聽 Chairman Baucus believes “This legislation is a smart investment on the federal balance sheet, and it’s an even smarter investment for American families, businesses and our economy.”聽 The Senate Finance Committee will hold an […]

Montana mounts fight on Rx Drug Costs

October 7, 2009

Faced with spiraling prescription drug costs in its employee health plan, the state of Montana has devised a new approach that should save $6 million next year and may be a first of its kind nationwide. The new prescription drug coverage, which takes effect Jan. 1 for the 32,000 people covered by the state employee […]

Alex & Jim

October 6, 2009

Jim and Alex are two young men with hemophilia.聽 They talk about the positive impact of camp and the importance of advocating for the bleeding disorders community and themselves.

Destiny’s Story: They Need to Hear from Us

October 3, 2009

I had the honor of going to Washington D.C to visit our Capital. It was everything you would image it would look like. It was a huge building looking statuesque amongst all the other buildings. Standing strong and regal, it was ominous and intimidating. Once inside I could hear the echoes of footsteps and ghostly whispers.

2010 State Legislative Preview: NEW HAMPSHIRE

September 21, 2009

NEW HAMPSHIRE RAISES DEPENDENT AGE ON HC POLICIES Most noteworthy for Granite State residents, 2009 saw the increase in the dependent age of children covered under a parents private insurance policy to 29 years of age. Also, New Hampshire continues to impose restrictions on the practice of data mining in light of its landmark bill […]

2010 State Legislative Preview: RHODE ISLAND

September 21, 2009

RI聽MOVES ON MEDICAID REFORM聽 In 2009, Ocean State lawmakers passed (H5112) Medicaid Reform. The bill helps RI with their Medicaid waiver. The waiver authorizes the implementation of the RI Global Consumer Choice Demonstration; creates the demonstration implementation taskforce. The bill became effective upon its passage on July 1, 2009 and is intended to lead to […]

2010 State Legislative Preview: VERMONT

September 21, 2009

VT LOOKS TO CONSOLIDATE PAST GAINS 2009 saw Vermont moving to implement comprehensive palliative care legislation, the nation’s strictest direct marketing rules to medical providers and the imposition of sole sourcing for its managed Medicaid program. As if this wasn’t enough, Vermont’s law prohibiting datamining is still making its way through the federal courts, as […]

2010 State Legislative Preview: MASSACHUSETTS

September 21, 2009

LEGISLATION MAKES WAY THROUGH GENERAL COURT Lawmakers on Beacon Hill work to make up for a lackluster beginning of 2009, with the cloud of corruption scandals hanging over senior lawmakers, including former speaker Sal DiMasi. DiMasi has been replaced with Robert DeLeo. Changing leadership teams has meant changes in committee chairs. Two bills punctuate the […]

2010 State Legislative Preview: CONNECTICUT

September 21, 2009

CT TO CONVENE SPECIAL PANEL ON BLEEDING DISORDERS Much depends on the outcome of the special legislative study group on Bleeding Disorders.聽 The study group is expected to consider issues confronting people with bleeding disorders across the lifecycle.聽 Co-chaired by State Representatives Karen Jarmoc and Matthew Conway the panel is expected to begin meeting in […]

2010 State Legislative Preview: MAINE

September 21, 2009

MARKETING RULES, 2010 ELECTION DOT ME’S COMING TERM The most important development in Maine is the departure of Jude Walsh, Governor Balducci’s special assistant for Healthcare Finance to Gould Associates. Walsh was the Governor’s point person for facilitating cost containment amongst chronic conditions. Balducci’s days are numbered literally. Term limited in 2010, it is unclear […]

And last but not least…a Senate Finance Committee Health Care Reform document

September 16, 2009

The long awaited, Chairman’s mark from the Senate Finance Committee has finally been released.聽 The 223-page document, entitled America’s Healthy Future Act of 2009, underscores the lower costs, quality and affordable health coverage it will provide individuals and families.聽 Chairman Max Baucus declares “the Finance Committee carefully worked through the details of health care reform […]

Will annual premiums average a whopping $30,803 in 2019?

September 16, 2009

Drew E. Altman, Ph.D., President and Chief Executive Officer at the Kaiser Family Foundation highlighted the potential cost of premiums in 2019 in a recent “Pulling It Together” update.聽 Assuming that premium increases over the next ten years revert to the average of the last ten years, 8.7%, he asserts that premiums for a family […]

Comparative Effectiveness Research (CER) highlighted on the HFA Advocacy Page

September 16, 2009

CER has been a priority issue for the HFA.聽 The necessity to cut costs led Congress to address CER in the health care reform debate (although CER is not a “new” issue).聽 Our commitment to education and awareness prompted the need for a document that outlines a definition and summary of CER.聽 聽This document has […]

H.R. 3200, Health care reform legislation is in audio format

September 15, 2009

We Read…You Listen…We ALL Decide!聽 This is the mission statement from a group dedicated to creating audio versions of the lengthy health care reform bills in Congress.聽 Over 80 dedicated volunteers, many of them voice over actors, spent hours recording H.R. 3200.聽 The goal of hearthebill.org is to ensure everyone has an opportunity to familiarize […]

HFA wants YOU to share your VOICE!

September 15, 2009

Jim Dawdy and Alex Ell are highlighted in a video, HFA recently posted on the website’s homepage.聽 Their message:聽 Share your story! 聽Jim and Alex highlight the importance of聽visiting Congress, discussing the issues (lifetime caps), and their love for summer camps that support the bleeding disorders community across the country.聽 HFA appreciates the hard work […]

Medical Privacy 101

September 14, 2009

Over 4 million businesses, employers, government agencies, insurance companies, billing firms, and all their business associates that may include pharmacy benefits managers, and pharmaceutical companies as well as marketing firms and data miners.聽 Patient consent is no longer required to share health records, no matter how embarrassing or intensely personal the contents may be.聽 While […]


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