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Dear Addy: Project CALLS 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

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.  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 […]

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Dear Addy: Accumulator Adjuster Programs

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 […]

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Dear Addy: Public Speaking

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 – many people worry about public speaking! Use these tips to help you become more confident and comfortable speaking during legislative meetings. Hopefully you’ll find this advice beneficial – […]

Dear Addy: Take Action

Dear Addy, What is the best way for me to contact my legislators when policy issues affecting the bleeding disorders community arise? Signed, Alert Advocate Dear Advocate, HFA’s Take Action Center has all you need to contact your legislators, including talking points on issues affecting the bleeding disorders community. Watch this short video on using the […]

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Dear Addy: New Parent

Dear Addy, I’m a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist?  Signed, New Mom  Dear Mom, You’ve come to the right place! Knowing where to […]

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Dear Addy: ABLE Accounts

Dear Addy, Are there ways for my teenage son to save money for college, without endangering his health coverage? My son is currently enrolled in Medicaid under our state’s Katie Beckett program for children with long-term disabilities. Signed, Savvy Saver Dear Saver, Here’s one option you and your son may wish to explore: opening an […]

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Dear Addy: 2018 Open Enrollment

Dear Addy, I’m applying for health insurance for the first time this open enrollment period. With a bleeding disorder, what should I look for in an insurance plan? Signed, First-time Subscriber Dear Subscriber, The Open Enrollment Period is a timeframe each year when health insurance plans or HMOs (health maintenance organizations) are required by law to accept applications […]

Bleeding Disorders Organizations Introduces Joint Statement Supporting Bi-partisan Alexander-Murray Legislation

Click here 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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Dear Addy: Health Insurance for Young Adults

Dear Addy, My son with hemophilia is about to turn 26 and will need to find his own insurance plan. As a parent, how can I help him navigate this process? Signed, Always-an-Advocate  Dear Advocate, This is an important but complicated task. HFA created the following infographic as a tool for walking through the different […]

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