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HFA RECOGNIZES CONGRESSIONAL REPRESENTATIVES AS 2018 CHAMPIONS

June 12, 2018

On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]

Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

June 29, 2017

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA).  On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

Dear Addy: Coverage for New Therapies

June 26, 2017

Dear Addy, I want to switch to a new hemophilia therapy and, though my doctor has prescribed the product, my insurer won’t authorize coverage. How can I get this covered? Signed, Concerned Consumer Dear Consumer, When new therapies come on the market, there is often a lag before health plans add those products to their […]

ACTION ALERT: Ask Your Senators to Vote NO on BCRA!

June 26, 2017

On Thursday, June 22, 2017, the Senate leadership released a “discussion draft” of its version of legislation to repeal the Affordable Care Act (ACA). Despite promises from numerous lawmakers, the Senate bill in fact builds off the much criticized, House-passed American Health Care Act (AHCA). The Senate discussion draft would, among other things: Undermine protections for […]

HFA Champion Award Given to 2 Members of Congress

June 24, 2016

On June 22, 2016, we hosted our 3rd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act and for HR 3742, The Access to Marketplace Insurance Act, other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving […]

Dear Addy: Out-Of-Pocket Costs

June 15, 2015

Dear Addy, So I saw the question you recently answered about what counts towards a deductible. You didn’t talk about what counts towards out-of-pocket costs. Does every penny I spend on healthcare count towards my out-of-pocket costs limit? Signed,  Pocket Picky  Dear Picky, No, not every penny you spend on healthcare will count towards your annual […]

Largest health insurer to keep key parts of law regardless of court ruling

June 11, 2012

Largest health insurer to keep key parts of law regardless of court ruling from the Washington Post: http://www.washingtonpost.com/national/health-science/largest-health-insurer-to-keep-key-parts-of-law-regardless-of-court-ruling/2012/06/10/gJQA7VYfTV_story.html?tid=pm_pop By N.C. Aizenman, Monday, June 11, 12:11 AM The nation’s largest health insurer will keep in place several key consumer provisions mandated by the 2010 health-care law regardless of whether the statute survives Supreme Court review. Officials at UnitedHealthcare will announce Monday that whatever […]

Community Pharmacists Lose Bid to Immediately Block Express Scripts-Medco Deal

April 27, 2012

By Rebecca Adams, CQ HealthBeat Associate Editor A federal judge has denied the request of a group of community pharmacists to immediately stop the acquisition of Medco Health Solutions by Express Scripts, Inc. The judge will next decide whether to throw out the lawsuit. The pharmaceutical benefits management companies Express Scripts and Medco merged on […]

HHS Considering Study on Blood Donation Standards for Gay and Bisexual Men

March 16, 2012

By Jane Norman, CQ HealthBeat Associate Editor The Department of Health and Human Services wants input on how to design a study that would detail under what circumstances men who have a history of sex with other men should be allowed to donate blood. Under current Food and Drug Administration policy, men who have had […]

U.S. Department of Health and Human Services releases Essential Health Benefits Bulletin

January 6, 2012

On Monday, Dec. 16, the U.S. Department of Health and Human Services (HHS) released a bulletin outlining guidance to states on implementing Essential Health Benefits (EHBs).  As you may recall, the Affordable Care Act will require individuals to have insurance coverage by 2014.  Individuals and business may purchase health insurance in a state based “health […]

Chinese Firms Linked to Tainted Heparin Still Supplying U.S.

October 28, 2011

By Anna Edney Courtesy of Bloomberg News Oct. 26 (Bloomberg) — Two Chinese companies implicated in supplying contaminated ingredients three years ago to Baxter International Inc. for its blood thinner heparin are still supplying product to the U.S., Republican lawmakers said. Baxter recalled the blood thinner in 2008 amid reports of deaths and allergic reactions. […]

Advisory Panel Releases ‘Essential Benefits’ Report

October 7, 2011

The Institute of Medicine (IOM) released its report of recommendations to the United States Department of Health and Human Services regarding what health benefits should  be provided by insurance plans under the Health reform law – the Affordable Care Act (ACA).   The ACA requires states to set up an health insurance market place or exchange by […]

Understanding the Debt Ceiling and the “Super Committee”

September 9, 2011

In early August the President signed into law the Budget Control Act of 2011, which is reported to save approximately $917 billion over the next ten years and will raise the debt ceiling by $900 billion, therefore carrying the government through the end of 2011. The bill also establishes a new joint Congressional committee that […]

Drug Companies May Face Uphill Battle on Passage of FDA Review Funding

September 5, 2011

CQ TODAY ONLINE NEWS – HEALTH Sept. 2, 2011 – 8:17 p.m. By Emily Ethridge, CQ Staff The pharmaceutical industry continues to push lawmakers to act quickly on approving a deal that would fund the Food and Drug Administration’s drug review process. But, although lawmakers from both parties have pledged to mark up the legislation […]

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 […]

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 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.  Already in 2011, the Food and Drug Administration (FDA) has approved […]

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 […]

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. […]

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 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 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. John Kitzhaber, […]

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 — and it appears almost certain work in many states will extend […]

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.  The most common question we get is whether there’s any way to speed up the process.  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  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 […]

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 […]

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.  In light of these challenges, the Hemophilia Federation of […]

The National Association of Insurance Commissioners (NAIC) Submits Medical Loss Ratio Regulation Recommendations to the Department of Health and Human Services

November 5, 2010

The Affordable Care Act requires that 80-to-85% of the money collected by insurance companies be spent on health care services and health care quality improvement.  Otherwise known as the Medical Loss Ratio, the intent of the provision is to ensure that more of the money enrollees pay each month for insurance premiums will go toward […]

The Center for Medicare Advocacy Examines Changes to Medicare Part D

October 13, 2010

The Medicare Part D annual election process is quickly approaching it runs from  November 15 – December 31.  CMS projects that for 2011, 1.2 million beneficiaries will have to change plans as a result of their current plans leaving the market or reducing their service area. According to the Center for Medicare Advocacy, this a […]

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 […]

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.  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 […]


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