Advocacy News

Kisa’s Weekend Travels: Hemophilia of Indiana Annual Meeting

August 31, 2010

On聽August 28-29, Hemophilia of Indiana held their annual meeting in Indianapolis.聽聽HFA’s Michelle Burg (Program Director)聽and Lauren聽Neybert (Program Coordinator) arrived Friday night to set-up the HFA聽booth. On Saturday, 聽the morning agenda began with聽a new program called, PEN’s Pulse on the Road (POTR) led by Laurie Kelley, President of LA Kelley Communications, Inc., and sponsored by Baxter […]

Center for American Progress publishes a report on how health reform saves money

July 12, 2010

By:聽 Michelle Pascucci There has been ongoing discussion on how the new health care law will be paid for and if it will save money. The Center for American Progress released a report detailing how the new law will lower the deficit and create a more efficient and cost effective health care system in the […]

The President refers to Nathan and Thomas Wilkes during address today

June 22, 2010

President Obama gave聽speech at the White House to signify 90 days after the health care reform bill was signed into law.聽 The president referred to several families including the Wilkes’.聽 He emphasized that he can not see Americans moving backward through a repeal of the law.聽 He acknowledges the law is not easy nor perfect […]

Blood Safety Update: MSM Donor Deferral Policy

June 15, 2010

The American Plasma Users Coalition -APLUS, formerly known as the Plasma Users Coalition (PUC), testified Friday, June 11, 2010 at the Advisory Committee for Blood Safety and Availability (ACBSA) committee meeting. 聽Mark Skinner of the World Hemophilia Federation spoke on behalf of the APLUS to present the APLUS views on the review of the current […]

Bleeding Disorders Family Meets President Obama

May 21, 2010

The Forbes family shares their story of visiting the Oval Office.

Preservation of Right to Maintain Existing Coverage – Section 1251 (Part II – Other Provisions)

May 17, 2010

Provision SEC. 1251 (a) NO CHANGES TO EXISTING COVERAGE.鈥 (1) IN GENERAL.鈥擭othing in this Act (or an amendment made by this Act) shall be construed to require that an individual terminate coverage under a group health plan or health insurance coverage in which such individual was enrolled on the date of enactment of this Act. […]

HHS Secretary Sebelius sends update on progress to Congress

May 11, 2010

In a recent letter Secretary Sebelius provided an update to Congress on the implementation of the immediate provisions in the new health care law.聽 The Secretary provided and update on young adult coverage, pre-existing conditions exclusions, the early retiree reinsurance program, coverage rescissions, small business tax credits, lowering premiums, and the Medicare Part D doughnut […]

Twenty-eight (28) states say yes

May 3, 2010

Secretary Sebelius received an answer from 43 states on Friday concerning their response to implementing a temporary high risk pool.聽 Twenty-eight (28) states have decided to they will run a high risk pool and fifteen (15) states have decided not to.聽 To review the list of states and learn more about the high risk pool […]

Raising a Family with Hemophilia

April 21, 2010

Chuck and Vicki talk about their family life with hemophilia.

Georgia leads the way: States that have said “NO” to temporary high risk pools

April 14, 2010

Georgia Insurance Commissioner John Oxendine has said “no” to the temporary high risk pool.聽聽See the following news article for more details and visit “Provisions of the聽Day” within the HFA Federal Blog section for more information about the temporary high risk pools.聽 Check back for additions to this blog.聽 Georgia

Immediate information that allows consumers to identify affordable coverage options – Section 1103 (Subtitle B – Immediate Actions to Preserve and Expand Coverage)

April 14, 2010

Provision (a) INTERNET PORTAL TO AFFORDABLE COVERAGE OPTIONS.鈥 (1) IMMEDIATE ESTABLISHMENT.鈥擭ot later than July 1, 2010, the Secretary, in consultation with the States, shall establish a mechanism, including an Internet website, through which a resident of any State may identify affordable health insurance coverage options in that State. (2) CONNECTING TO AFFORDABLE COVERAGE.鈥擜n Internet website […]

Access to Therapies – Section 1554 (Subtitle G – Miscellaneous Provisions)

April 9, 2010

Provision Notwithstanding any other provision of this Act, the Secretary of Health and Human Services shall not promulgate any regulation that鈥 (1) creates any unreasonable barriers to the ability of individuals to obtain appropriate medical care; (2) impedes timely access to health care services; (3) interferes with communications regarding a full range of treatment options […]

Blood Safety Update

April 9, 2010

For the past few weeks, media attention, US Senate interest and federal agency meetings scheduled on the topic of blood safety and donor deferral criteria have been circulating. Specifically, Senator John Kerry (D-MA) sent a letter to the FDA Commissioner, with 17 other Senators’ co-signatures requesting a review of the deferral criteria for prospective blood […]

Bringing Down the Cost of Healthcare Coverage – Section 2718

April 2, 2010

Provision (a) CLEAR ACCOUNTING FOR COSTS.鈥擜 health insurance issuer offering group or individual health insurance coverage shall, with respect to each plan year, submit to the Secretary a report concerning the percentage of total premium revenue that such coverage expends鈥 ”(1) on reimbursement for clinical services provided to enrollees under such coverage; (2) for activities […]

Immediate Access to Insurance for Uninsured Individuals with a Preexisting Condition – Section 1101 (Temporary High Risk Pool)

April 1, 2010

Provision (a) IN GENERAL.鈥擭ot later than 90 days after the date of enactment of this Act, the Secretary shall establish a temporary high risk insurance pool program to provide health insurance coverage for eligible individuals during the period beginning on the date on which such program is established and ending on January 1, 2014. Summary […]

Extension of Dependent Coverage – Section 2714

March 31, 2010

Provision (a) IN GENERAL.鈥擜 group health plan and a health insurance issuer offering group or individual health insurance coverage that provides dependent coverage of children shall continue to make such coverage available for an adult child (who is not married) until the child turns 26 years of age. Nothing in this section shall require a […]

Painting a Picture in the States: State Legislative Action in 2010

March 30, 2010

By Kim Bernstein and Michelle Pascucci State legislative sessions will end quicker than they began, however the bleeding disorder community has been instrumental and supportive of a number of bills being introduced around the country. Bleeding disorder community members are actively advocating for legislation that directly impacts the community. Advocates are supporting affordable, quality care […]

State-by-State: Benefits of Health Care Reform

March 30, 2010

The Democratic Policy Committee (DPC), chaired by Senator Byron Dorgan has created a state- by-state analysis of the impact of health care reform on each individual state.聽 The DPC has several web pages dedicated to health care reform including section-by-section summaries, reports and bulletins.聽 To read the state-by-state analysis, please visit the DPC website: DPC […]

HFA’s New Blog Section: Provision of the Day

March 30, 2010

In an effort to educate the bleeding disorders community, the HFA will blog about sections within the Patient Protection and Affordable Care Act, Public Law 111-148 and the Health Care and Education Reconciliation Act of 2010, Public Law 111-152.聽 The blog section will be called “Provision of the Day” and will highlight (by section), what […]

College Student Shares His Story

March 25, 2010

Christian Rodriguez, an HFA聽 advocacy intensive participant is an inspiration to the bleeding disorders community.聽 Christian has made it his mission to improve the lives of himself and the people in his community by sharing his story.聽 The goal of the intensives program is to inspire participants to take an active, grassroots approach to effecting […]

Health Care Reform Update: Debate on the Reconciliation Bill

March 23, 2010

At approximately 11:50 am on March 23, 2010, President Obama signed the health care reform bill, H.R. 3590 into law.聽 Now the public anxiously awaits the Senate to debate and vote on the ”Health Care and Education Reconciliation Act of 2010” (H.R. 4872). 聽聽H.R. 4872 makes some modifications to H.R. 3590, but also includes reforms […]

Fifth Generation Blood Brother

March 6, 2010

John Reed inspires with his positive outlook on his life with hemophilia.聽 John decided early on that he was not going to let hemophilia control his life, he was going to take control and live his life.

Communicating With Your State Legislator

February 13, 2010

Mark created a Hemophilia Task Force group in Connecticut.聽 This group had state legislators, national non-profit advocates, patients, and hemophilia doctors working together to ensure people with bleeding disorders in CT receive the best care possible.聽 What are you waiting for?! YOU can make a difference in your state too!

Impact of Inaction: Rural America and Healthcare Reform

February 12, 2010

By:聽 Michelle Pascucci The Center for Rural Affairs released a report entitled Why Health Care Reform Can’t Wait: The Benefits of Health Reform for Rural America this week.聽 Families and individuals living in rural communities have a higher rate of chronic disease and are also more likely to have individual policies than people in urban […]

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 […]

Are Personal Health Records making the grade?

February 8, 2010 has just released its first Report Card grading various managers of Personal Health Records. The Full article detailing their report can be found here: Additional Information about Personal Health Information can be found at this link for their Personal Health Record Frequently Asked Question page here: EXCERPT OF ARTICLE: A “PHR” is […]

Web-Based Records Worries Patients, Prompts More Neutral Language

February 1, 2010

Thursday January 28th, 2010 Kaiser Health News Kaiser Permanente’s experience while providing digital records to patients highlights the potential for miscommunications — and sometimes needless alarm, The Huffington Post Investigative Fund reports. The health care company gave patients access to the same online lab reports that went to doctors and they included warning messages, such […]

NORD quoted on lifetime caps issue in New York Times

January 27, 2010

A recent article highlights the impact the lifetime caps language in the pending legislation will have on the rare and chronic disorders community.聽 Michelle Andrews, the article’s author writes about the need to eliminate caps, the cost to policy holders, and provisions in the bills.聽 To read the article please visit:聽 聽

Through Thick and Thin

January 26, 2010

Mark and Sasha give us a peek into their lives as a couple dealing with Hemophilia, HIV and hepatitis C.聽 They discuss the importance of community and the value of support from people who understand.

Back to the Basics: FDA’s new web resource

January 18, 2010

Questions like “What is the approval process for a biological product and what does the FDA do?” are answered on the Food and Drug Administration’s (FDA) new “FDA Basics” web page.聽 The FDA created a new web page to assist consumers in understanding the role and function of the FDA.聽 The FDA describes the new […]

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