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Washington Wire: June 2020

June 30, 2020

U.S. Department of Health and Human Services releases rule paring back anti-discrimination provisions On June 12th, the HHS Office of Civil Rights released a final rule聽re-interpreting anti-discrimination provisions of the Affordable Care Act. The new rule removes explicit patient protections against discrimination by health care providers and insurers. HFA joined with twenty-eight other patient and […]

Word From Washington: Patient groups warn that Administration policy encourages discrimination in health care

June 16, 2020

HFA joined with twenty-eight other patient and health advocacy groups to issue the following statement 聽regarding a final rule released by the U.S. Office of Civil Rights/HHS on Friday, June 12th. The rule, interpreting anti-discrimination provisions of the Affordable Care Act, removes explicit patient protections against discrimination by health care providers and insurers. The groups鈥 […]

Washington Wire: May 2020

May 28, 2020

Click Below to Translate Page to Spanish. Federal rule allows health plans to discount manufacturer copay assistance. On May 7, 2020, the U.S. Department of Health and Human Services finalized a rule that affects individuals who rely on聽patient copay assistance programs. The HHS rule (the 鈥2021 Notice of Benefits and Payment Parameters,鈥 or NBPP) allows […]

Word From Washington: HFA Joins With Patient Groups to Urge Supreme Court to Uphold Health Care Law

May 13, 2020

Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an聽amicus curiae or friend of the court brief urging the U.S. Supreme Court to uphold the Affordable Care Act in the case of聽California v. Texas (previously Texas v. United States). The case is on appeal from lower court decisions invalidating (in whole […]

Patient Groups Applaud Supreme Court鈥檚 Decision to Take Up Health Care Case

March 2, 2020

On March 2, 2020, the U.S. Supreme Court announced that it will hear an appeal from the Fifth Circuit ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. In earlier phases of that litigation, a federal district court and an appellate court had ruled that the ACA鈥檚 individual […]

Washington Wire: February 2020

February 28, 2020

Click Below to Translate Page to Spanish. Federal insurance rules proposed for 2021 Plan Year. Every year, the U.S. Department of Health and Human Services publishes a federal rule (the 鈥淣otice of Benefits and Payment Parameters,鈥 or NBPP) to govern operations of the ACA marketplaces and ACA health plans for the coming year. The 2021 […]

Washington Wire: January 2020

January 31, 2020

Click Below to Translate Page to Spanish. HFA and NHF co-hosted a Safety Summit in Washington, D.C., over three days at the end of January. The summit was convened in recognition and response to community concerns arising from a series of drug safety reports in 2019. Those safety incidents rocked the hemophilia community 鈥 and […]

Word From Washington: Patient Groups Urge Supreme Court to Swiftly Take Up Health Care Case

January 16, 2020

Patient and health advocacy groups representing millions of Americans with pre-existing conditions filed an amicus curiae or friend of the court brief urging the U.S. Supreme Court to immediately take up the case of Texas v. United States. The case is the latest court challenge to the health care law known as the Affordable Care […]

Word From Washington: 聽24 Patient Groups Endorse Expedited Supreme Court Review of Affordable Care Act Case聽

January 3, 2020

Twenty-four organizations representing millions of patients strongly support the petitions filed today by state attorneys general and by the U.S. House of Representatives that seek expedited U.S. Supreme Court review of last month鈥檚 Texas v. United States ruling.聽 The coalition issued the following statement:聽 鈥淥ur organizations, representing millions of individuals and families affected by chronic […]

Washington Wire: December 2019

December 29, 2019

On December 18, 2019, the U.S. Fifth Circuit Court of Appeals issued its long-awaited ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. The 5th Circuit ruling upholds (in part) an earlier lower court decision that declared the ACA to be unconstitutional, due to Congress鈥 2017 enactment of […]

Word From Washington: December 18, 2019 Ruling in Texas v. United States, Update #2

December 20, 2019

Last Wednesday evening, the U.S. Fifth Circuit Court of Appeals issued a ruling in Texas v. United States, a case challenging the constitutionality of the Affordable Care Act. The bleeding disorders community has been anxiously awaiting this pivotal court decision. HFA staff want to update you on what is known at this point. The 5th […]

Word From Washington: December 18, 2019 Ruling in Texas v United States

December 18, 2019

Patient advocacy groups representing millions of Americans with serious health conditions decried a December 18th聽ruling from the Fifth Circuit U.S. Court of Appeals in Texas v. United States, a case concerning the constitutionality of the Affordable Care Act. The Fifth Circuit ruling strikes down the ACA鈥檚 individual mandate and sends the case back to the […]

Word From Washington: Patient Groups Release Statement on New Public Charge Rule

August 13, 2019

Patient groups representing millions of Americans with serious health conditions voiced strong concern about a U.S. Department of Homeland Security final rule released on August 12, 2019. The new rule directs DHS to broadly expand the 鈥減ublic charge鈥 evaluation 鈥 which aims to determine whether an individual is likely to become dependent on the government […]

Washington Wire: July 2019

July 31, 2019

FEATURED STORIES Product recall announced; patient organizations are in ongoing communications with manufacturer Bayer announced the recall of two lots of Kogenate庐聽FS antihemophilic factor (recombinant) 2000 I.U. vials on July 19, 2019. Bayer announced that 3000 I.U. of one product (Jivi), past its expiration date, had been mislabeled as another product (2000 I.U. of Kogenate […]

Word From Washington: District Court Upholds Rule about Short-Term Limited Health Plans

July 19, 2019

District Court Ruling Upholding Short-Term Health Insurance Rule聽Could Make Comprehensive Coverage Unaffordable; Leave Many Uncovered Patient groups representing millions of Americans with serious health conditions are voicing concern about access to affordable, comprehensive health coverage after U.S. District Court Judge Richard Leon today upheld an administration rule expanding access to short-term limited-duration (STLD) health plans. […]

Washington Wire: June 2019

June 28, 2019

Featured Stories: HFA held a Patient Fly-in and Virtual Hill Day聽on June 10, 2019. Twenty-four community members from 14 different states came to Washington, D.C. to tell their lawmakers about living with bleeding disorders 鈥 and to explain what people in our community need in terms of quality, affordable health coverage. Fly-in participants also urged […]

Washington Wire: May 2019

May 30, 2019

Featured Story: CMS decides against allowing Medicare plans to limit coverage of 鈥減rotected class鈥 drugs. This past month brought some welcome news from the U.S. Centers for Medicare and Medicaid Services. On May 16, CMS released a final rule on drug pricing in the Medicare Advantage and Medicare Part D programs. In that final rule, […]

Word From Washington: CMS Drops Proposal to Allow Medicare Plans to Limit Coverage of “Protected Class” Drugs

May 17, 2019

  The U.S. Centers for Medicare and Medicaid Services (CMS) released a final rule yesterday on drug pricing in the Medicare Advantage and Medicare Part D programs. In its final rule, CMS chose not聽to implement a harmful change that it had initially put forward 鈥 a change strongly opposed by HFA and numerous other patient […]

Washington Wire: April 2019

April 30, 2019

Featured Story: Some relief ahead from accumulator adjusters. Finally some good news regarding accumulator adjusters! Patient advocates, including HFA, have been warning lawmakers that accumulator adjuster programs threaten access to care for people with chronic health conditions. In recent weeks, state and federal lawmakers signaled they have heard this message and took steps to rein […]

Dear Addy: 5 Minutes for Project CALLS

April 15, 2019

Dear Addy- I am having a horrific time with my insurance company getting a prior authorization approved. I know I should call Project CALLS, but I simply don鈥檛 have time to be on the phone with the insurance company and Project CALLS. Why is it so important that I let HFA know what鈥檚 going on […]

Word From Washington: HFA, Others, Urge For ACA Be Upheld

April 1, 2019

17 Patient Groups Urge Appeals Court to Uphold Health Care Law Loss of Patient Protections Would Raise Barriers to Health Insurance HFA joined a group of seventeen patient advocacy organizations in filing an amicus curiae (“friend of the court”) brief today in case of Texas v. United States, pending in the U.S. Court of Appeals […]

Washington Wire: January 2019

January 31, 2019

FEATURED STORY What to Watch in the States in 2019 鈥 State Medicaid Trends Legislative sessions have begun in all but four states (Alabama, Florida, Louisiana and Nevada begin sessions in the months ahead).聽 As lawmakers begin to tackle the numerous issues they need to address in the coming months, let鈥檚 look at what to […]

Word From Washington: December 14, 2018 Ruling in TX V. Azar, Update #2

December 17, 2018

Last Friday evening, we learned that a federal judge had ruled in the case of Texas v. Azar聽that the Affordable Care Act is unconstitutional in its entirety. This news has alarmed many. HFA staff want to update you on what we know at this point. First and foremost, please be aware that this ruling does […]

Word From Washington: December 14, 2018 Ruling in TX v. Azar

December 14, 2018

HFA learned late Friday night that a federal court has struck down the entire Affordable Care Act as unconstitutional. You can find an explanation of聽the lawsuit (Texas v. Azar) here and can read a description of the latest ruling here. HFA is studying the ruling and will post a more detailed update soon. In the […]

Washington Wire: November 2018

November 30, 2018

Featured stories: Healthcare was a driving issue for many voters in the 2018 mid-term elections. The results of the 2018 election are in and we now know that the 116th聽Congress will be a divided Congress 鈥 聽a Republican Senate and a Democratic House. Will the new Congress do anything to impact access to meaningful healthcare? […]

Washington Wire: October 2018

October 30, 2018

Featured stories: New HHS policy could diminish protections for people who depend on quality, affordable health insurance. On Oct. 22, the U.S. Department of Health and Human Services released new guidance spelling out how states can win approval to waive various Affordable Care Act requirements. This arcane new policy could seriously impact protections for patients […]

Word from Washington: HFA Joins Amicus Brief in Legal Challenge to Short-Term Health Insurance Rule

October 8, 2018

As we鈥檝e previously reported, several lawsuits are currently pending in federal courts concerning aspects of the Affordable Care Act. One lawsuit questions whether the ACA is still valid, despite the elimination of the individual mandate penalty; other cases take an opposite tack, challenging recent Administration actions and rulemakings as inconsistent with the ACA. Today, HFA […]

HFA and NHF Following Developments in Ryan White HIV/AIDS Program in Response to Magazine Article

July 20, 2018

  Many in our community have questions about a recent Slate magazine聽article聽that reported that the U.S. Department of Health and Human Services is reallocating money from the Ryan White HIV/AIDS Program to help defray costs of the U.S. Office of Refugee Resettlement as a result of current immigration policy. The Ryan White Program, named for […]

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聽alongside an online聽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 Introduces Joint Statement Supporting Bi-partisan Alexander-Murray Legislation

October 25, 2017

Click here聽for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation. (Full text available in pdf and below) People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray Market Stabilization Legislation Senators Lamar Alexander […]


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