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News & Perspectives

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 […]

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 […]

Alex & Jim

September 14, 2009

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 […]

The long view…

September 9, 2009

Every so often it is important to take stock of where you are, where you have been and where you are going in politics. The national debate around healthcare reform has garnered a majority of the TV time and column inches in the newspaper. Events happening in DC right now are critical. Regardless of the […]

CDC: Effect of Antiretroviral Therapy on Risk of Sexual Transmission of HIV Infection and Superinfection

September 9, 2009

Effect of Antiretroviral Therapy on Risk of Sexual Transmission of HIV Infection and Superinfection

Community members take action to self-advocate and petition FDA for change!

September 9, 2009

Theresa Toigo, RPh, MBA Director Office of Special Health Issues Food and Drug Administration (FDA) 5600 Fishers Lane HF-12, Room 9-49 Rockville, MD 20857 Theresa.Toigo@fda.hhs.gov 聽 Dear Ms. Toigo, 聽 We are people with Hemophilia and their supporters. 聽 We recognize and appreciate the recent FDA publication of rules to clarify and expand the process […]

Mr. Wilkes goes to Washington

September 9, 2009

Nathan Wilkes, bleeding disorders community member, 聽has been invited to be a guest and sit in President Obama’s box during the Joint Session address.聽 Click here to read more.聽 To watch the Joint Session online聽tune into C-SPAN. The Wilkes’ story聽was featured on the White House website.聽 Their story illustrates the struggles families with expensive, rare […]


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