Advocacy News

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

October 7, 2010

The Commonwealth Fund hosted a webinar聽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.聽PCIPs are a temporary measure until 2014 when the health […]

New York Governor David Paterson signs S. 5000-B into Law!

October 7, 2010

S. 5000-B gives the New York State Insurance Department the authority to deny requests from insurance companies to create specialty drug pricing tiers, also known as Tier IV drug pricing. 聽These types of tiers have been used by insurance companies in other states to require patients to pay higher co-payments and co-insurance based on the […]

The “YouToons” explain health care reform

October 6, 2010

The Kaiser Family Foundation, a non-profit organization that focuses on health policy issues, recently released a video featuring cartoon characters explaining the new health care law.聽 In a short 9-minute video, the YouToons explain “problems with the current health care system, the changes that are happening now, and the big changes coming in 2014”.聽 To […]

HFA President, Brayshaw Host President Obama in Backyard

September 25, 2010

Washington, DC:聽 President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw.聽聽Paul, an individual with Hemophilia is a resident of Falls Church, VA. He聽opened the forum with a statement regarding the positive impact of the Affordable Care Act as it relates to individuals […]

Affordable Care Act at Six Months

September 24, 2010

This week marked the six month anniversary of the passage of the health care reform law. Many events have taken place over the past week to highlight the new law.聽 We were also reminded of the great need for reform, newly released 2009 Census data shows that 50.7 million individuals went without health insurance this […]

Congressional Black Caucus (CBC) holds 2010 Fall Health Braintrust

September 24, 2010

The 2010 CBC Fall Health Braintrust: “Working Together to Ensure Appropriate Health Care Reform Implementation” highlighted the importance of appropriate implementation of key health care reform provisions in improving the health, health care and wellness of all currently underserved individuals and communities. The Health Braintrust was held during the 2010 Congressional Black Caucus Foundation Annual […]

Center for American Progress Marks Six Month Anniversary of Affordable Care Act

September 24, 2010

The Center for American Progress held a panel discussion of health insurance experts to examine what new consumer protections have already been implemented and what changes the American public can expect in the health insurance market in the very near future. The discussion also underscored the major role the National Association of Insurance Commissioners (NAIC) […]

Stand Up For Healthcare!

September 23, 2010

Hemophilia Federation of America’s Public Policy Director, Kisa Carter was invited by Families USA to participate in a blog series on the聽Stand Up For Healthcare website that highlights the 6 month signing of the new health law.聽Other organizations participating in the blog series include: Young Invincibles, Health Access California, Mom’s Rising, National Physicians Alliance, Advocacy […]

Mathematica Center on Health Care Effectiveness – “Politics and Policy of Comparative Effectiveness: Looking Back, Looking Ahead”

September 10, 2010

On Thursday September 9, the Center on Health Care Effectiveness held its inaugural Issue Form: “Politics and Policy of Comparative Effectiveness: Looking Back, Looking Ahead” 聽The forum examined: the creation of the new center at Mathematica, what is Comparative Effectiveness Research (CER) 聽and how health care reform will influence the future of comparative effectiveness in […]

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).聽 An estimated 34,500 people would qualify for the program that has enough funds to cover approximately 975 Iowans.聽 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 […]

Kaiser Family Foundation holds forum on Medicare, Healthcare Reform and People with Disabilities

September 9, 2010

On Wednesday September 8, the Kaiser Family Foundation held a forum examining the health care issues facing people with disabilities and the opportunities and challenges presented by the new health care reform law enacted earlier this year.聽 The discussion explored the changes in health reform that could affect access to affordable health care for people […]

HFA Webinar: Women with Bleeding Disorders – Advocacy & Legislative Efforts that Impact YOU!

September 3, 2010

The HFA hosted a webinar on Monday August 30 that highlighted advocacy and legislative efforts focused on women and bleeding disorders. During the webinar participants learned how to advocate and raise awareness for individuals with undiagnosed bleeding disorders.聽聽The discussion also highlighted the current standard of care at Hemophilia Treatment Centers (HTCs) across the United States. […]

So we passed the law, what next? A summary of the regulatory process

August 31, 2010

The federal regulatory or rulemaking process, like the legislative process, can be lengthy and complicated. The rulemaking process is “the process by which federal agencies develop, amend or repeal rules“.(i) Shortly after passage of Public Law 111-148 and 111-152 (the Patient Protection and Affordable Care Act & the Health Care and Education Reconciliation Act), various […]

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 […]

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