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Washington Wire: August 2018

August 31, 2018

Featured Stories: HFA, along with other patient groups, continues to argue against restrictive Medicaid eligibility policies. HFA has written before about a new federal policy that allows states to cut off Medicaid coverage for adults who don鈥檛 meet state work requirements. The US Centers for Medicare and Medicaid Services has so far approved work requirements […]

Word from Washington: Association Health Plans Infographic

August 23, 2018

The Trump Administration issued a final rule on June 19, 2018 expanding association health plans. The rule鈥檚 stated aim is to 鈥渉elp Americans struggling to afford health coverage find new, more affordable options.鈥 You can read more about the rule聽here. HFA and many other patient advocacy groups think the final rule takes the wrong tack.聽Association […]

Dear Addy: Project CALLS Infographic

August 20, 2018

Dear Addy, I recently attended an event and learned about submitting issues with my insurance to HFA鈥檚 Project CALLS. However, I still have some questions about how CALLS works and what happens when I submit an issue. Can you explain the process? Signed, CALLS Quandary Dear Quandary, HFA created an infographic to answer this very […]

Intern Introspective: That鈥檚 a Wrap for Alexandra and Catherine

August 10, 2018

Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Alexandra and Catherine are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Alexandra and Catherine: […]

Dear Addy: Mental Health

August 6, 2018

Dear Addy, I鈥檝e heard friends in the bleeding disorders community speak about depression and other mental health concerns. I want to support them, but I鈥檓 not sure how to approach this sensitive topic. Can you offer guidance on how to have a conversation with friends about mental health? Signed, Caring Friend Dear Friend, Thank you […]

Word from Washington: New Rules on Short-term Insurance

August 2, 2018

New federal rules, released Aug. 1, roll back limits on short-term health plans. Short-term plans are primarily designed to bridge gaps in coverage that can occur, e.g., when an individual is transitioning between jobs. As such, these plans don鈥檛 have to meet Affordable Care Act standards. They can deny coverage and/or can charge higher premiums […]

HFA seeks historical materials to honor bleeding disorders in its 25th year

July 26, 2018

Hemophilia Federation of America will recognize 25 years serving the bleeding disorders community in 2019 with plans to display historical records at its annual symposium in San Diego. The Washington, D.C.-based organization is currently collecting archival-type material, such as vintage medical equipment, supplies, rally posters, journals, diaries, newsletters, documents, photographs and other items representing the […]

Intern Introspective: Experiencing a Plasma Collection Center

July 23, 2018

Last week, Alexandra and Catherine had the opportunity to tour Grifols鈥 plasma collection center in Frederick, Md. Centers like this collect plasma from donors and returns the red blood cells to the donor. The plasma that is collected then undergoes several levels of strict testing and is pooled and parted out to create many different […]

Dear Addy: Supporting Siblings

July 23, 2018

Dear Addy, I have a bleeding disorder and two siblings who are unaffected. My siblings often ask how they can help or what they can do to support me. How do I share with them what I鈥檓 feeling and how to best support me? I don鈥檛 want to burden them with my issues. Signed, Supportive […]

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 […]

Dear Addy: August Recess

July 9, 2018

Dear Addy, I鈥檇 like to meet with my legislators at home during Congress鈥檚 August recess. How do I schedule a meeting? Signed, Recess Rockstar Dear Recess, August recess is a great time to meet with your federal legislators at home. Members of the House of Representatives will be on recess from July 27 through Sept. […]

Intern Introspective: The First Five Weeks

July 5, 2018

The halfway point of our Policy and Government Relations Internship program is an excellent time for Alexandra and Catherine to reflect on the first five weeks of their internship. In this blog post, Alexandra and Catherine break down what an average week looks like for them as HFA interns and they talk about what the […]

Dear Addy: Accumulator Adjuster Programs

June 25, 2018

Dear Addy, I鈥檝e seen HFA post information on accumulator adjuster聽programs, but I鈥檓 still a little unclear about what this means and how I could be affected. Does HFA have any other resources on accumulator adjuster聽programs? Signed, Deductible Detective Dear Detective, This is a great question, as accumulator adjuster programs (AAPs) are increasingly common in the […]

Intern Introspective: Experience on Capitol Hill

June 22, 2018

We’ve introduced you to Alexandra and Catherine, our summer Policy interns. They have been busy in D.C., attending Congressional hearings and learning the ropes of working for a national organization. During their second week, they experienced first-hand the planning and execution of our fifth annual Patient Fly-In. Read their experiences through their eyes on how […]

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 […]

Dear Addy: Virtual Hill Day

June 11, 2018

Dear Addy, I saw a post on HFA鈥檚 Facebook page about a Virtual Hill Day on June 12. Can you tell me more about this and how people outside of D.C. can be involved? Signed, Virtual Visitor Dear Visitor, Every year, HFA hosts a fly-in for members of the bleeding disorders community to come to […]

Intern Introspective: Meet Alexandra and Catherine

June 8, 2018

Earlier this year, we opened applications for a ten-week policy and government relations internship* for this summer. We are excited to introduce you to the two candidates that we selected! Alexandra Abreu Boria and Catherine Anderson, who聽are part of the bleeding disorders community and have been chosen because of their leadership qualities and interest in […]

Dear Addy: Planning for Summer Activities

May 28, 2018

Dear Addy, This summer, my family has plans to travel and attend camp, in addition to numerous other activities and commitments. Can you recommend resources to help manage my kids鈥 bleeding disorder while we鈥檙e on the go? Sincerely, Summer Savvy Dear Summer, With Memorial Day marking the unofficial start of summer, this is a timely […]

Dear Addy: New Treatment Research

May 15, 2018

Dear Addy, How do I approach my doctor with questions on new research about a treatment for my bleeding disorder? There are so many novel treatments under development or newly available! I want to make sure that my doctor considers my input and will work with me to select the treatment that best serves my […]

Dear Addy: Becoming Involved With Committees

May 1, 2018

Dear Addy, I recently participated in a state legislative day and there was a lot of discussion about committees. It鈥檚 been years since I took a civics class and I don鈥檛 remember much about committees. Could you explain what they are and why they鈥檙e important to our advocacy efforts? Signed, Curious About Committees Dear Curious, […]

Dear Addy: Symposium

April 16, 2018

Dear Addy, I鈥檓 attending HFA鈥檚 Symposium next week and I鈥檇 like to gather information about personal and legislative advocacy to bring back to my community. What sessions do you recommend I attend? Signed, Planning Ahead Dear Planner, It鈥檚 great to hear you will be attending Symposium in Cleveland! This year, we have expanded our advocacy […]

Dear Addy: Building Relationships

April 2, 2018

Dear Addy, How can I maintain relationships with my legislators after participating in an advocacy day? Signed, Building for the Future Dear Builder, It鈥檚 great to hear you are thinking ahead to what鈥檚 next! Building relationships with your legislators is an important advocacy strategy and there鈥檚 a lot you can do from home and throughout […]

Dear Addy: Op-ed

March 22, 2018

Dear Addy, I鈥檝e heard writing an op-ed for my local newspaper is a good way to spread awareness about bleeding disorders. I鈥檇 like to submit a piece during Bleeding Disorders Awareness Month. Can you offer tips for submitting my story? Signed, Ready-to-Write Dear Writer, Writing an op-ed or opinion piece is a great way to […]

Dear Addy: Bleeding Disorders Awareness Month

March 5, 2018

Dear Addy, I鈥檝e seen HFA鈥檚 Facebook posts about Bleeding Disorders Awareness Month. Can you tell me more about it and how I can get involved? Signed, Attentive Advocate Dear Attentive, For more than 30 years, the bleeding disorders community celebrated March as the unofficial Hemophilia Awareness Month. In 2016, this designation become official when the […]

Dear Addy: Bullied for Bruising

February 20, 2018

  Dear Addy, My eleven-year-old son recently shared that he鈥檚 being bullied at school because of bruising caused by his bleeding disorder. How can I help him educate his classmates about hemophilia and prevent future bullying? As much as I want to protect my son, I also know that I need to empower him to […]

Dear Addy: Legislative Day Toolkit

February 5, 2018

Dear Addy, I鈥檓 participating in an Advocacy Day with my local bleeding disorders organization this month. I have limited experience with legislative advocacy and it鈥檚 been a long time since I took a civics class! Could you share insight on what to expect and how to prepare? Signed, Proactive Participant Dear Participant, This is a […]

Dear Addy: Project CALLS 2018

January 19, 2018

Dear Addy, I’m already experiencing problems with my insurance in the new year. Where can I go to report these issues? Signed, New Year, Old Issues Dear New Year, You are not alone. HFA regularly hears from community members with concerns about access to care due to limitations or mandates set by their insurance company. […]

HFA and NHF Issue Joint Statement Regarding Shire Lawsuit Against Genentech/Roche

January 12, 2018

In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche.聽 Certain information has become public during this period that enables NHF and HFA to provide some limited guidance as to the scope of the injunction that Shire has requested from the […]

Dear Addy: Accumulator Adjuster Programs

January 8, 2018

Dear Addy, I get assistance with my out-of-pocket costs from the manufacturer of 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 are running up against a new strategy that […]

Dear Addy: Public Speaking

December 25, 2017

Dear Addy, I want to participate in a legislative day, but I’m a terrible public speaker. Help! Signed, Nervous Nelly Dear Nervous, You are not alone 鈥 many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you鈥檒l find this advice beneficial 鈥 […]


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