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News & Perspectives

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 […]

Advocates in Action: The Forbes’ Family Meets President Obama

October 16, 2009

FOR IMMEDIATE RELEASE: October 16, 2009 Washington, DC:聽 聽Imagine having the opportunity to visit the Oval Office and meet the President of the United States.聽 This opportunity became a reality for 12-year old Emmanuel Forbes with severe hemophilia complicated by an inhibitor, his five siblings and parents, Michael and Jane Forbes. Emmanuel was granted his […]

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. […]

Baxter Recognizes Outstanding Hemophilia Advocacy Initiatives

October 12, 2009

聽 It is with great pleasure that Baxter applauds the Partnership for Advocacy and Communications Training (PACT) Grant winners. Run by the Hemophilia Association of New Jersey (HANJ) and supported through a grant from Baxter, the PACT Grant Program provides financial assistance to support a wide range of advocacy programs from the bleeding disorders community. […]

Leland Smith

October 11, 2009

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.

Heparin: Change in Reference Standard

October 1, 2009

FDA MedWatch Heparin: Change in Reference Standard – The change will result in 10% reduction in the potency of the heparin marketed in the U.S. Audience: Pharmacists, physicians, hospital risk managers and consumers FDA notified healthcare professionals and patients of a change to heparin, effective October 1, 2009, which will include a new reference standard […]

NORD Press Release

October 1, 2009

聽Danbury, CT. —– The leading advocacy groups for Americans and Europeans with rare diseases鈥攖he National Organization for Rare Disorders (NORD) and the European Organization for Rare Diseases (EURORDIS)鈥攈ave signed a Memorandum of Understanding to join forces on several key strategic initiatives on behalf of rare disease patients and their families.聽 The intent is to increase […]

Wyeth Announces Recipients of the Soozie Courter “Sharing a Brighter Tomorrow” Hemophilia Scholarship Program

October 1, 2009

聽 Program Marks Continued Commitment to Education and Assistance to Hemophilia Community聽(Click Here for Announcement) 聽Collegeville, Pa., September 29, 2009 division of Wyeth (NYSE:WYE), today announced the recipients of the Soozie Courter “Sharing a Brighter Tomorrow” Hemophilia Scholarship Program for the 2009 assistance for higher education to individuals with hemophilia. Since 2002, Wyeth has donated […]

BioRx and Bayer Healthcare Offer Free

September 28, 2009

Cincinnati, Ohio (September 28, 2009) (Click Here for PDF)鈥 Bayer HealthCare and BioRx, a specialty pharmaceutical company, announce the availability of Quest for Infusion: Nate Goes to Camp, a new children’s book about hemophilia. 聽Quest for Infusion: Nate Goes to Camp, written by Chris Perretti Barnes and illustrated by Michael Graham, is the story of […]

HFA Press Release: HFA MEETS GOAL OF 1,000 FANS ON OFFICIAL FACEBOOK PAGE!

September 28, 2009

FOR IMMEDIATE RELEASE: 聽 聽September 28, 2009 聽Washington, DC:聽 The Hemophilia Federation of America (HFA) launched its first online community social networking medium in July 2009.聽 HFA’s official Facebook site is designed to make connections and build relationships with community members across the country. On September 19, 2009, just two months after the page was […]

PPTA LAUNCHES NEW WEBSITE TOOL

September 28, 2009

FOR IMMEDIATE RELEASE 聽September 23, 2009 聽Contact: Kara Flynn 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 Kym H. Kilbourne (443) 458-4669 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 (443) 458-4682 (443) 370-1177 (cellular) 聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 (443) 995-2102 (cellular) kflynn@pptaglobal.org聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽聽 kkilbourne@pptaglobal.org PPTA LAUNCHES NEW WEBSITE TOOL聽(Click Here for PDF) Enhancement to help potential plasma donors find plasma centers 聽ANNAPOLIS, MD (September 23, 2009) – Visitors to DonatingPlasma.org can more […]

HFA Press Release: HFA COLLABORATES WITH COTT OFFERING TRAVEL SCHOLARSHIPS TO SURVIVORS’ REUNION-CSL Behring offers $10,000 in support of the scholarships

September 23, 2009

FOR IMMEDIATE RELEASE: September 21, 2009 聽The Hemophilia Federation of America (HFA) will collaborate with the Committee of Ten Thousand (COTT) by offering a total of 33 travel scholarships for members of the Blood Brotherhood Program to attend COTT’s twentieth anniversary celebration and survivors’ reunion.聽 The celebration will be held at the Liaison Hotel in […]

HFA Press Release: HFA COLLABORATES WITH COTT OFFERING TRAVEL SCHOLARSHIPS TO SURVIVORS’ REUNION-Baxter offers $15,000 in support of scholarships

September 23, 2009

FOR IMMEDIATE RELEASE: September 21, 2009 聽The Hemophilia Federation of America (HFA) will collaborate with the Committee of Ten Thousand (COTT) by offering a total of 33 travel scholarships for members of the Blood Brotherhood Program to attend COTT’s twentieth anniversary celebration and survivors’ reunion.聽 The celebration will be held at the Liaison Hotel in […]

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 […]


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