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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. […]

Intern Introspective: Summer in D.C.

July 19, 2019

  Jasmin and Dylan have spent the past seven weeks busy working on projects in HFA鈥檚 office. When they are not attending briefings, researching and writing their policy projects, and participating in team meetings, they are getting to know Washington, D.C. In this week鈥檚 blog, Jasmin and Dylan share how they鈥檝e made the most out […]

Word From Washington: HFA Signs On to Letter Opposing Medicaid Block Grants

July 18, 2019

Patient Groups Express Strong Opposition to Medicaid Block Grants Proposals for Block Grants or Per Capita Caps in Medicaid Would Harm Patients with Serious and Chronic Health Conditions Today, 27 patient groups submitted a letter to Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma expressing strong opposition to policies that would allow states […]

Dear Addy: Back to School 2019

July 12, 2019

Dear Addy, My son has hemophilia and I鈥檓 nervous about his safety as he starts school this year. How can I advocate for him at school and make sure his bleeding disorder is understood? Signed, Nervous Nancy Dear Nervous, You are not alone 鈥 many families struggle with this experience! Taking a proactive approach to […]

Word From Washington: HFA Monitoring ACA Case

July 10, 2019

HFA continues to monitor the Texas v. United States case, in which a U.S. district court declared that the entire Affordable Care Act is unconstitutional by virtue of Congress鈥檚 2017 repeal of the ACA鈥檚 individual mandate tax penalty. The district court ruling has been appealed by California and 19 other states, along with the U.S. […]

Intern Introspective: The First Five Weeks

July 5, 2019

The midway point of our Policy and Government Relations Internship is an excellent time for Jasmin and Dylan to reflect on the first five weeks of their internship. In this blog post, they break down what an average week looks like for them as HFA interns and what the rest of the summer holds. Jasmin: […]

Dear Addy: Virtual Hill Day

July 2, 2019

Dear Addy, I recently saw HFA post on Facebook about an advocacy day on Capitol Hill. I wasn鈥檛 able to participate on the day of the event; can I still get involved? Signed, Advocacy Amplified Dear Advocacy, Yes! The posts you saw were in conjunction with HFA鈥檚 annual Patient Fly-in and Virtual Hill Day on […]

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 […]

Intern Introspective: Hitting the Ground Running

June 21, 2019

Earlier this month, HFA introduced you to Jasmin and Dylan, our summer Policy and Government Relations Interns. Jasmin and Dylan have been busy in D.C., attending congressional hearings and learning the ropes of working for a national nonprofit organization. During their second week, Jasmin and Dylan experienced first-hand the planning and execution of our sixth […]

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, […]

Dear Addy: History Exhibit

May 20, 2019

Dear Addy, I attended HFA鈥檚 Symposium in San Diego and really enjoyed the history exhibit. Is there a way for me to access the timeline? I鈥檇 like to read more about the history of the bleeding disorders community. Signed, Advocate for the Ages 聽Dear Advocate, Yes! You can access the latest version of HFA鈥檚 historical […]

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 […]

Dear Addy: Raising Awareness

March 18, 2019

Dear Addy, I鈥檝e been sharing HFA鈥檚 Facts a Day about Bleeding Disorders Awareness Month, but I want to do more. How can I help raise awareness about bleeding disorders? Signed, Ready to Activate Dear Ready to Activate, It鈥檚 wonderful to hear that you are motivated to help spread the word about bleeding disorders! As a […]

Washington Wire: February 2019

February 28, 2019

Featured Story: State Legislative Sessions Pick Up Steam In last month鈥檚 edition of the Washington Wire, we wrote about steps some states are taking with respect to their Medicaid programs. Here is a brief update on some of the Medicaid-related developments that have happened since then. Utah: the state legislature and Governor acted to override […]

Dear Addy: Manufacturer Copay Assistance & Accumulator Adjuster Programs

February 18, 2019

Dear Addy, I use a manufacturer copay assistance program to help me meet the out-of-pocket costs associated with my clotting factor product. My insurer just notified me that it will no longer apply that assistance to my deductible and out-of-pocket maximums! Can they do that? Signed, Distressed Over Deductibles Dear Deductibles, You have run up […]

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: Government Shutdown Gets Reprieve

January 25, 2019

President Trump announced today that he would sign a bill funding the government through February 15th聽and ending the 5-week long government shutdown. The President said he will continue to negotiate with Congress on border security issues over the next three weeks but held out the possibility that the government could shut down again if there […]

Dear Addy: Surprise Billing

January 21, 2019

  Dear Addy I鈥檝e heard the term 鈥渟urprise billing鈥 in the news recently and I鈥檓 concerned about how it could affect my family, especially if we have to go to the emergency room for a bleed and a provider is out-of-network. Can you share more on this issue and what we can do if it […]

Washington Wire: December 2018

December 27, 2018

Featured Story: Federal court rules that the ACA is unconstitutional: Texas v. Azar On Friday, Dec. 14, we learned 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 posted a number of updates to tell the […]

Dear Addy: Advocacy Leadership Council

December 24, 2018

Dear Addy, I鈥檓 the parent of a hemophiliac and I鈥檇 like to become more involved in advocacy work to support my child and the bleeding disorders community at-large. Does HFA have any advocacy programming available for parents? Signed, Active Advocate 聽 Dear Advocate, Yes! HFA recently announced the creation of a new Advocacy Leadership Council. […]

Word From Washington: Partial Federal Government Shutdown

December 22, 2018

Congress and the President failed to reach agreement on a government spending bill before the deadline of December 21, 2018. As a result, number of U.S. government agencies have halted work and will remain shut down until a deal is reached. In contrast to some earlier budget standoffs, though, this time approximately 戮 of the […]

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 […]

Dear Addy: Learning Central

December 10, 2018

Dear Addy, I鈥檝e heard about HFA鈥檚 new Learning Central, but I鈥檓 not sure how to find it and the benefits of using it. Can you provide more information? Signed, Lifelong Learner Dear Learner, HFA鈥檚 Learning Central is part of the HFA Institute, a new e-learning initiative designed for the bleeding disorders community. The HFA Institute […]

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? […]

Dear Addy: New Legislator

November 26, 2018

Dear Addy, My district elected a new member of Congress in the mid-term election and I鈥檇 like to start building a relationship with them. How can I connect with my legislator as they prepare to take office? Signed, Proactive Advocate Dear Proactive, It鈥檚 never too early to start building a relationship with your new legislator. […]

Dear Addy: Framing Your Story

November 13, 2018

Dear Addy, I鈥檇 like to be more involved in my local organization鈥檚 advocacy work in the new year, but I have a hard time coming up with the right words to get my point across. Does HFA have any resources for storytelling for advocacy? Signed, In Need of Instruction Dear Instruction, You came to the […]


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