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Advocacy News

America’s Innovation Agency: The FDA

September 2, 2011

By instilling confidence in U.S. products and technologies, we stimulate economic growth and open markets overseas. By聽MARGARET A. HAMBURG Courtesy of the Wall Street Journal There are encouraging signs that the pharmaceutical industry’s pipeline of new products is not as stalled as some say.聽 Already in 2011, the Food and Drug Administration (FDA) has approved […]

Advocacy Issues, Andy Mathews

August 20, 2011

Andy Matthews discusses advocacy issues that he feels are important.

A Situation, Mark Antell

July 30, 2011

Just a few decades ago, hemophilia did not just mean you had a bleeding disorder. It also meant that you were at high risk of being infected with blood-borne illnesses. Mark Antell knows this well. He received Hepatitis C through a blood transfusion sometime in the 60s or 70s. And the AIDS crisis of the […]

A Hopeful Future

July 12, 2011

Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!

So Far, Exchanges Are a ‘Mixed Bag’ for Patients, Group Says

July 6, 2011

By John Reichard, CQ HealthBeat Editor The health care law will disappoint many Americans if its health insurance exchanges don’t deliver decent coverage at affordable rates for consumers, including those with serious illnesses like cancer. Meeting those expectations may be difficult, judging from comments by a major patient advocacy group as it waits for the […]

Ohio District Court Rules in Favor of Health Care Law

July 6, 2011

By Jane Norman, CQ HealthBeat Associate Editor A federal district court in Ohio ruled in favor of the health care law on Tuesday, saying it was bound by a decision in favor of the law’s constitutionality made by the Circuit Court of Appeals in the 6th District a week ago. The Obama administration said the […]

Health Insurance Exchange Regulation Due Out July 7

June 29, 2011

CQ HEALTHBEAT NEWS By John Reichard, CQ HealthBeat Editor   The Obama administration plans to release its proposed regulation on state health insurance exchanges July 7. The rules governing the establishment of the exchanges, which under the health care overhaul law begin operating in 2014, are much anticipated by state lawmakers, insurers, employers and consumers. […]

Health Care Team Tackles Cost and Quality of Care for Dual-Eligible Patients

June 24, 2011

CQ HEALTHBEAT NEWS By Rebecca Adams, CQ HealthBeat Associate Editor Deep within the bureaucracy of the Health and Human Services Department, a 20-person team is trying to find a way to save money and improve care for the 9.2 million people on both Medicare and Medicaid. The task of the Federal Coordinated Health Care Office, […]

John Jarratt In Action

June 21, 2011

John Jarratt speaks to a group about growing up with hemophilia. This is a longer piece, so grab a cup of coffee and we promise you will gain some perspective from John’s wisdom!

New Study Highlights Problems Accessing Specialty Care for Children on Public Insurance

June 17, 2011

  New England Journal of Medicine Auditing Access to Specialty Care for Children with Public聽Insurance June 15, 2011 Joanna Bisgaier, M.S.W., and Karin V. Rhodes, M.D. Evidence suggests that the 37 million children covered by Medicaid-CHIP聽are less likely to receive specialty care than children covered by commercial insurance. Children covered by Medicaid-CHIP may face greater […]

Oregon Governor Expected to Sign Exchange Bill

June 10, 2011

CQ HEALTHBEAT NEWS June 9, 2011 – 2:43 p.m. By Jane Norman, CQ HealthBeat Associate Editor   Health insurance exchanges aren’t stalled everywhere. Oregon’s legislature this week passed bipartisan exchange legislation and the governor is expected to sign it. “I look forward to signing this key piece of our health care improvement agenda,” Gov.聽John Kitzhaber, […]

Medicaid call-in days next week

June 10, 2011

From Our Friends at Families USA! With both the House and Senate in session next week, we expect the聽debate about how to reduce the deficit to be front and center. We hope you join us in asking your聽members in the field聽to call their聽U.S. representative and senators聽and urge them to reject Medicaid cuts, in any form. […]

Grounded In Reality: The Effects of Health Care Reform on Leland Smith

June 7, 2011

For some, the teenage years are the time to dream. But Leland Smith, who has severe hemophilia A, has always had to be firmly grounded in reality. “[Careers] like movie star or athlete aren’t even in the books,” he says wistfully. Leland’s hemophilia comes with a complication called an inhibitor: a resistance to the medication […]

The Importance of Comprehensive Care

June 3, 2011

Watch this video to understand why comprehensive care is vital for people in the hemophilia community to live a long, healthy life. You will hear from individuals who have directly been impacted by comprehensive care and an individual who works in one of the centers and has seen first hand the success of comprehensive care.

Hatch, Camp Demand More Information on Waiver Denials From HHS

May 26, 2011

CQ HEALTHBEAT NEWS May 25, 2011 – 4:17 p.m. By Jane Norman, CQ HealthBeat Associate Editor   Two Republicans have written Health and Human Services Secretary聽Kathleen Sebelius聽saying there has not been enough transparency when it comes to waivers from the health care law the agency has granted to companies, labor unions and other groups. House […]

People with Bleeding Disorders and HCV send letter to FDA Commissioner

May 25, 2011

HFA recognizes and supports efforts to further the development and availability of promising HCV therapies for the bleeding disorders community. Click here to read the recent letter to FDA Commissioner, Dr. Margaret Hamburg. Click here to read the MASAC Recommendations for Treatment of Chronic HCV Infection.

State Legislators Tussle Over Health Benefit Exchanges as Adjournments Near

May 18, 2011

CQ HEALTHBEAT NEWS May 18, 2011 By Jane Norman, CQ HealthBeat Associate Editor As state legislatures near the end of their sessions, many lawmakers are still struggling with whether to approve measures to set up health-benefits exchanges created under the health care law 鈥 and it appears almost certain work in many states will extend […]

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 […]

States Don’t Necessarily Have to Pass Laws to Prepare for Exchanges, HHS Officials Say

May 6, 2011

By John Reichard, CQ HealthBeat Editor Health and Human Services officials have encouraged states over the past year or so to act sooner rather than later to pass legislation governing the creation of health insurance exchanges 鈥 without going out of their way to suggest that there’s another approach. But officials confirmed to CQ HealthBeat […]

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 […]

Consumer Insurance Survey

November 23, 2010

Health care reform will have a profound impact on persons with bleeding disorders as health insurance companies take steps to comply with various insurance market reform provisions. However, changes stemming from the health care reform law are only one piece of the health care coverage puzzle. 聽In light of these challenges, the Hemophilia Federation of […]


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