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Infusing Love: Opening Our Hearts & Home

November 9, 2017

When I got married 19 years ago, I never thought I would be a foster parent to over 40 children with special needs. It never occurred to me that I would have the blessing of being a stay-at-home mom for 14 years. I never would have thought I would end up with six forever children […]

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

August 15, 2017

– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ — The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

May 24, 2017

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

Affordable Care Act Eases Concerns for Family with Hemophilia

December 29, 2014

This article originally appeared in the Wall Street Journal. To read it in its entirety, click here. ________________________________________ Title: Affordable Care Act Eases Concerns for One Family Date: December 25, 2014 By: Christopher Weaver Source: The Wall Street Journal Jaime Hood and her family were among the health law’s biggest winners in 2014. Ms. Hood said she enrolled […]

The Silent “Carriers” of Hemophilia

November 13, 2014

Women have been the silent “carriers” of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA’s Blood Sisterhood program was established […]

Boston Globe: Specialty Drugs Transform Lives — But At a Cost

July 21, 2014

Every year, Cora Higson fills out a sheaf of forms and waits several long, anxious days to learn whether a charity will pay for the drug she needs to breathe. The medication — Tracleer — is so essential, Higson says, that she is supposed to call her doctor immediately if she misses a dose. But […]

NOLA Times-Picayune: New Problem for Patients with Chronic Diseases

May 16, 2014

By Bruce Alpert, NOLA.com | Times-Picayune WASHINGTON — A new federal rule governing the Affordable Care Act allows insurance companies providing coverage under the law to reject premium payments from charities that help people with chronic diseases obtain health care. The CMS rule has drawn protests from groups such as the Hemophilia Federation of America […]

High-Cost ‘Specialty Tier’ Prescription Drugs Under Scrutiny in PA

November 19, 2013

If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage. “It’s roughly $15,000 a month, and from that I’m lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]

Adopted into Hemophilia

October 15, 2011

Matt and Anna Landseadel knew little about hemophilia when they chose to bring six-month-old Chris into their home. “All I heard was ‘Six-month-old baby,’” Anna says with a smile, explaining how they came about fostering a child with severe hemophilia A. Chris, now seven, has since been adopted into the Landseadel family, along with his […]

Medical mystery: UMass doctors race to counter rare blood disorder

September 2, 2011

By Geraldine A. Collier Courtesy of Worchester Telegram & Gazette Doctors are taught in medical training to “look first for the horses, not the zebras.”  In other words, look first for the typical causes of symptoms before exploring more exotic possibilities. But, former Worcester School Superintendent John Durkin wouldn’t be alive today if his doctors at […]

Attorneys General Back Missouri Lt. Gov. in Challenge to Health Care Law

August 2, 2011

By Jane Norman, CQ HealthBeat Associate Editor Attorneys general from 21 states filed a brief Tuesday backing a legal challenge to the health care law that’s being pursued by Missouri’s lieutenant governor. The brief includes state officials who are the plaintiffs in a separate multistate case pending in a federal appeals court in Florida. Their […]

Our Journey: The Landseadel Family

May 5, 2011

Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.

Commonwealth Fund webinar on Pre-Existing Condition Insurance Plans focuses on Wisconsin and New Mexico

October 7, 2010

The Commonwealth Fund hosted a webinar on the Affordable Care Act provision on establishing temporary high-risk pools, also called Pre-Existing Condition Insurance Plans (PCIPs). PCIPs are designed to quickly make health insurance available to uninsured individuals with pre-existing conditions, many of whom previously had been denied coverage. PCIPs are a temporary measure until 2014 when the health […]

Iowa Pre-existing Conditions Insurance Plan (PCIP) Program’s low enrollment

September 9, 2010

Only 32 people have applied for the Iowa PCIP (temporary high risk pool).  An estimated 34,500 people would qualify for the program that has enough funds to cover approximately 975 Iowans.  Iowa received roughly $35 million in federal funding to pay for the temporary program called HIP-Iowa Fed The PCIP is a temporary program that […]

Friendship Through Tough Times

July 8, 2010

Jill & Kathy have supported each other through the toughest of times.

Lawmakers Redraw Bill Aimed at Online Protection of Minors

February 9, 2010

It’s back to the drawing board for proponents of legislation that would prevent the online collection of minors’ health-related information. State Sen. Elizabeth Schneider says her new bill should be ready by the end of the month and will replace a law that was challenged earlier this year in U.S. District Court. Schneider says she wants greater protections for Maine teenagers who […]

All crossed up

December 13, 2009

The Hemophilia Federation of America was contacted this week by the staff at the National AFL-CIO about an ongoing labor issue. About 100 employees at the American Red Cross’ division of Blood Services in and around Philadelphia are on strike. The majority of these workers drive the bloodmobiles the American Red Cross uses to support […]

Barry, a True Blood Brother

December 1, 2009

Barry has hemophilia, HIV, and hepatitis C.  He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life.  Barry hopes by sharing his story he will empower others to share theirs.

Several states plan to push for more Regulation of Pharmacy Benefit Managers (PBM’s)

November 23, 2009

With increased pressure on medical costs, many states have chosen to rely on PBM’s to help administer prescription drug benefits for state’s Medicaid and Medicare programs. A controversial issue in that cost goes down, but access and product choice are also severely limited. If cost is the only concern, then well regulated PBM’s can be […]

Puritan’s Pride: Massachusetts marks first anniversary of prescription drug marketing bill

November 13, 2009

 A year after the Bay state became the first place in this country to pass a comprehensive bill addressing prescription drug marketing, the commonwealth is taking stock. The bill’s impact cannot be understated for its impact on industry. Two major trade organizations, PhRMA and AdvoMed, the people who sell prescription drugs and medical devices have […]

State Revenues in Freefall

November 10, 2009

The 2010 fiscal year continue to provide lawmakers with reason to reach for the budget ax. As such, a whole host of state access and treatment programs remain very much on the chopping block.  Throughout the recession state revenue collections have consistently underperformed expectations. The decline has been steep and unrelenting. Even pessimistic forecasts have […]

Unintended Consequences

November 3, 2009

In politics, we often hear people talk about unintended consequences. In fixing one problem, we sometimes lay the seeds of the next one. Consider what has happened in Maine. This past spring, the Maine Legislature passed a bill addressing drug marketing practices to minors. The measure, passed with lots of fanfare from consumer protection advocates […]

Aloha means Health Access

October 23, 2009

When somebody mentions Hawaii… visions of white sand beaches and volcanoes come to mind. What doesn’t come to mind is Hawaii’s healthcare services. Off the radar screen, the state has quietly assembled healthcare institutions that seem to be delivering Hawaiians good care at a reasonable price. People on the mainland are starting to notice. This […]

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 […]

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.  It doesn’t really exist as a matter of law in the States. The charter is roughly the same as our 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 […]

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 […]

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 […]


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