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Advocacy News

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 […]

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 […]

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 […]

President Obama to address Congress September 9

September 4, 2009

On September 2, Speaker of the House Nancy Pelosi and Senate Majority Leader Harry Reid sent a letter to President Obama asking him to address a Joint Session of Congress.聽 On September 9, President Obama has a speech planned to lay out a more detailed health care reform plan before a joint session of Congress.聽 […]

Farewell to Harvey as he heads to Hampton University

September 3, 2009

Harvey Gates, Jr. will be missed by the HFA Team.聽 Harvey spent the entire summer as an intern with HFA.聽 As a community member with hemophilia, Harvey realizes the importance of supporting community organizations.聽 Harvey completed multiple projects聽 and expressed enthusiasm while working for HFA this summer.聽 We wish him well as he heads back […]

What’s gonna happen next?

September 2, 2009

September is here and Congress is back in session next week.聽 There are still many unanswered health reform questions.聽 Last week, the Kaiser Health Network reported on Senator Chuck Grassley’s view of next steps; “If town meetings are going to mean anything, if democracy is going to mean anything, then you listen to your people […]

HFA Launches Students for the Awareness of Bleeding Disorders (SABD) web pages

September 1, 2009

Young leaders are instrumental to the future of the bleeding disorders community.聽 Students and young adults have a VOICE and an important story to tell.聽 Furthermore, they want to be involved and advocate for the bleeding disorders community.聽 In response to those needs, the HFA Team has launched web space on the HFA website to […]

MASS INACTION: Placing the Massachusetts Model and Healthcare debate in a National context

August 31, 2009

In 2004, local community groups placed a constitutional amendment on the ballot creating a right to “healthcare for all.” Massachusetts election law requires constitutional amendments be approved by the voters and the legislature twice in two successive elections. Both the legislature and voters approved the measure in ’04. But in 2006, Governor Romney, at the […]

“Lies, Damned Lies and Statistics”

August 28, 2009

Coal miners use to rely on canaries to let them know when an unhealthy level of gases had built up. The canary would end up meeting an untimely demise, but more often than not, the accompanying miner would end up getting out safely. Over time the idea of the coal miner has become romanticized, complete […]

Remembering Senator Kennedy

August 27, 2009

Senator Edward “Ted” Kennedy, spent 9-terms (40-plus years) in the Senate.聽 He will be laid to rest on Saturday, August 29, 2009 at Arlington National Cemetery.聽 He was one of the most outspoken and effective members of the Senate.聽 He has been a long term proponent of health care reform and has a lengthy record […]

Focus on Data Mining

August 21, 2009

When a patient fills a prescription at a major pharmacy, a record of that prescription (minus the patient name) is sold to companies – so-called health information organizations – that pool information from multiple pharmacies. The bundled information is combined with individual physician identities purchased from the American Medical Association to create prescriber profiles (name, […]

Chutes and Ladders

August 20, 2009

I have an admission. I am not particularly proud of myself, but I got a D- in High School Biology. Normally, I wouldn’t share something this personal in this space, but I do so to illustrate a point. In High School, I couldn’t look at the model of the double helix in class without thinking […]

Community Members Nathan & Sonji Wilkes, live on MSNBC

August 20, 2009

Check聽out the video of community members Nathan and Sonji Wilkes, interviewed聽by聽Dr. 聽Nancy on MSNBC today!

Why Palliative Care matters…

August 18, 2009

In 2008, New York took an active approach to increasing the use of palliative care by educating health care professionals about this form of care and its potential benefits passing Senate Bill 2108. SB 2108 provided $4.5 million in grants from the state’s public health budget to recruit faculty for and develop programs in health […]

Read Nathan Wilkes’ remarks from Grand Junction, CO town hall meeting

August 17, 2009

Nathan Wilkes and his family have truly inspired聽the community to share their stories and let their VOICES be heard.聽 To read聽Nathan’s entire introduction on August 15, 2009聽CLICK HERE.


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