Advocacy News

Transitions: The Effects of Health Care Reform on Alex Ell

May 13, 2011

Twenty-three year old Alex Ell was diagnosed with hemophilia at birth.聽 Hemophilia is a rare genetic bleeding disorder that results in excessive bleeding, occurring spontaneously or as a result of an injury. 聽Bleeding episodes cause聽pain and damage to joints, muscles and organs.聽These episodes are treated聽with an聽intravenous infusion of blood clotting products to replace the missing […]

Guest Blog: Social Security Disability

May 2, 2011

  Jennifer C. Jaff, Esq, Executive Director of Advocacy for Patients with Chronic Illness, Inc. Reprinted with Permission.   We get a lot of questions about Social Security disability.聽 The most common question we get is whether there’s any way to speed up the process.聽 The truth is that, if you’re denied at the initial […]

FDA Commissioner Testifies before the Senate

March 18, 2011

CQ HealthBeat Senator Blunt (R-MO) specifically asked 聽Commissioner Hamburg about the speed of drug approvals and the idea of imposing user fees for the first time on generic drug companies. The administration proposed adding $40 million in user fees for generic companies in its fiscal 2012 budget. After the hearing, a reporter asked Hamburg for […]

HHS defends the CLASS Act

March 18, 2011

CQ HealthBeat A top Health and Human Services official pledged at a House hearing, Thursday that a long-term-care program included in the health overhaul law won’t be launched unless it is financially sustainable. Kathy Greenlee, assistant secretary for aging at HHS, testified on behalf of the agency. Greenlee also defended the $120 million requested by […]

Much More Hopeful: The effects of Health Care Reform on the Dunham family

February 11, 2011

Health care reform is a controversial issue, but for families dealing with chronic medical conditions, there is no controversy.聽 For Jenni Dunham of Tennessee, whose husband Chris and son Jacob both have von Willebrand disease, the future has gotten “much more hopeful” since the reform. Jenni estimates that Jacob, now three, would have reached the […]

Focus of the Month: Key parts of the Affordable Care Act take effect in 2011

February 3, 2011

At least 21 different provisions in the new federal health insurance reform law go into effect during this year. Some of the most relevant measures include: Higher Medical Loss Ratios, Closing the Medicare Drug Coverage Gap, Eliminated Cost-Sharing for Medicare Preventive Services, Creation of Center for Medicare and Medicaid Innovation, Disclosure and Review of Health Insurance Premium Increases, Funding for Health Insurance Exchanges, Funding for Medical Malpractice Demonstrations…

Watch Lisa Grasshoff’s HELP Committee Testimony

February 1, 2011

“Full Committee Hearing – The Affordable Care Act: The Impact of Health Insurance Reform on Health Care Consumers” Lisa Grasshoff’s testimony to the HELP(Health, Education, Labor and Pensions) Committee begins at minute 112:50. Watch Lisa’s testimony

A Little Bit of Relief

January 15, 2011

For parents of children with hemophilia, the future is a constant worry.聽 While this will always be the case, the recent healthcare reforms have provided a little bit of relief.聽 Heidi and Andrew Forrester from Washington are the parents of William, a two-year-old with severe hemophilia A.聽 While William was lucky enough to be covered […]

Institute of Medicine Hears from Stakeholders on Essential Benefits

January 14, 2011

The Institute of Medicine (IOM) is undertaking a study that will make recommendations on the criteria and methods for determining and updating the essential health benefits package in health care reform. As you may recall, HFA submitted comments to the initial survey conducted in December. The outcome of this study will be a published report […]

HFA Submits Comments to IOM Survey on Essential Benefits

December 7, 2010

At the request of the Secretary of the Department of Health and Human Services, the Institute of Medicine (IOM) is doing a study that will make recommendations on the criteria and methods for determining and updating the essential health benefits package. The 聽IOM will review how insurers determine covered benefits, medical necessity and will provide […]

Department of Health and Human Services Amends “Grandfathered” Regulation

November 17, 2010

As you may recall, the “grandfathered” rule in health care reform, was designed for individuals to keep their health plan while changes to the insurance market were implemented through newly created health plans. 聽Health plans that are designated as “grandfathered” must maintain certain characteristics under health care reform to keep that status. The original regulation […]

Advisory Committee on Blood Safety and Availability Announcement

November 8, 2010

ANNOUNCEMENT: The Advisory Committee on Blood Safety and Availability is meeting November 4-5, 2010. The first order of business for today’s session was the swearing in of new members. NCHS is proud to announce that Ed Burke, Director of Advocacy and Outreach/Interstate Sales for Ethical Factor, a division of NCHS, has been appointed to a […]

A-PLUS and NORD submit comments on the Pre-existing Condition Insurance Plans (Temporary High Risk Pools)

October 8, 2010

The American Plasma Users Coalition (A-PLUS) and the National Organization for Rare Disorders (NORD) wrote joint comments in response to proposed rules on the PCIP program (temporary high risk pools).聽 The comments highlight our major concerns which include:聽 Funding limitations and third party payer prohibitions Eligibility and enrollment limitations Child-only policies The “other criteria” definition […]

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

President Barack Obama held a backyard discussion on healthcare reform at the home of Hemophilia Federation of America’s President, Mr. Paul Brayshaw. 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 with […]

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 […]

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