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Dear Addy Corner

Dear Addy: 2018 Open Enrollment

October 30, 2017

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 […]

Dear Addy: Health Insurance for Young Adults

October 15, 2017

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 […]

Dear Addy: Teaching Independence

September 19, 2017

Dear Addy, I have two preteen kids with bleeding disorders and I want to instill in them independence with respect to their care. Do you have any advice on ways to build this into our routine? Signed, Introducing Independence Dear Independence, This is a great question to be asking now, as transitioning to independence is […]

Dear Addy: Sports

September 4, 2017

Dear Addy, My son has hemophilia and loves to play sports. He is going into 6th grade this fall and wants to join the soccer team. How do I set realistic expectations with him and his coach? Signed, Soccer Mom Dear Mom, You are not alone in your concerns – this is a common question […]

Dear Addy: Step Therapy 2

August 21, 2017

Dear Addy, My insurance company is trying to make me go through step therapy to get access to the treatment product I need! Are they practicing medicine without a license and is it illegal? Sincerely, Feeling Pressured Dear Pressured, There is no clear legal answer to your question: is an insurer “practicing medicine without a […]

Dear Addy: Project CALLS 2

August 8, 2017

Dear Addy, I’m having trouble with my health insurance, which is making it difficult to manage my bleeding disorder. What can I do to make my concerns heard? Signed, Help Wanted Dear Help, Thank you for reaching out to HFA about the trouble you’re having with your health insurance. You are not alone in your […]

Dear Addy: PRIDE Project

July 24, 2017

Dear Addy, I have heard of HFA’s PRIDE Project but am not clear on how I can participate and what I can learn from my participation. As a bleeding disorders community member, what do I need to know about the project and can I really do research? Signed, Researching Research Dear Researcher, You do research […]

Dear Addy: Hematology Visit

July 10, 2017

Dear Addy, I often become flustered when I visit my hematologist, despite having lots of questions. Can you offer guidance on how to prepare for my visit so I get my questions answered? Signed, Stressed by Appointment Dear Stressed, Any doctor visit can generate a case of nerves. If you have butterflies in your stomach […]

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 […]

Dear Addy: History

June 12, 2017

Dear Addy, My daughter has informed me that most people in her generation don’t know anything about AIDS, Hemophilia, or Ryan White. I find this pretty upsetting. How can we educate the next generation about the history of the bleeding disorders community? Sincerely, Old Enough to Remember Dear Remembrance, This is a great question and […]

Dear Addy: Virtual Hill Day

May 30, 2017

Dear Addy, I saw a lot of activity on social media last week about HFA’s Virtual Hill Day and Patient Fly-in. Can I still participate? Signed, Always an Advocate Dear Advocate, YES! On May 24th, HFA organized a Virtual Hill Day, in conjunction with meetings on Capitol Hill, to encourage community members nationwide to contact […]

Dear Addy: Life Insurance

May 15, 2017

Dear Addy, I’m applying for life insurance, but I’m either ineligible or being told I have to pay three times the normal rate because I have hemophilia. Is this typical with a rare disorder, and is there anything I can do about it? Signed, Planning Ahead Dear Planning, Unfortunately, as you’ve found, your health status […]

Dear Addy: Symposium

May 1, 2017

Dear Addy, I attended Symposium in April and gained a lot from the advocacy sessions. I want to incorporate what I learned at Symposium into my regular routine. What recommendations do you have for making advocacy an everyday activity? Signed, Maintaining the Momentum Dear Momentum, Thanks for attending HFA’s Symposium last month in Providence. It’s […]

Dear Addy: HFA Community Research Portal

April 18, 2017

Dear Addy, What is the HFA Community Research Portal and why is it important to me? Sincerely, Research Meets Advocacy Dear Research, The HFA Community Research Portal is an exciting new research project that will provide individuals with bleeding disorders the chance to directly engage in meaningful research projects. The HFA Community Research Portal is […]

Dear Addy: Share Your Story

April 2, 2017

Dear Addy, I’ve been following the news about the Affordable Care Act. What else can the bleeding disorders community do to ensure access to quality health care? Signed, Energized Advocate Dear Energized, Advocacy is most successful when people share their personal story about how legislation affects them. Across political parties, Americans are reaching out to […]

Dear Addy: Advocacy Committee

March 6, 2017

Dear Addy, I really want to help my local organization grow its advocacy efforts by starting a committee. However, I’m overwhelmed by the process. Where should I start, and how do I maintain an advocacy committee? Signed, Committee Quandary Dear Quandary, Creating or joining an advocacy committee is a great role if you are interested […]

Dear Addy: Social Media

February 20, 2017

Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]

Dear Addy: Out-of-Pocket Expenses

February 6, 2017

  Dear Addy, I just got my daughter’s January EOB, and I realized that my family is now responsible for up to $14,300 in out-of-pocket (OOP) expenses. Why did this amount go up $600, even though we kept our same insurance? And how can I afford this?!? HELP! Signed, Anxious about OOPs Dear Anxious, High […]

Dear Addy: Self-care

January 23, 2017

Dear Addy, With the holidays behind us, I’m trying to focus on taking care of myself in the new year. However, I struggle to do this between family, work, and social obligations. Can you provide some tips on self-care so I can be a better advocate for myself and my family? Signed, Stressed Out Dear […]

Dear Addy: Workplace Disclosure

January 9, 2017

Dear Addy, I just accepted my dream job, and I can’t wait to get started. Unlike my last job, however, no one knows I have a bleeding disorder. When should I approach my new employer with this, and how much should I share? Sincerely, New Job Jitters Dear New Job, You only need to disclose […]

Dear Addy: New Years Resolution

December 26, 2016

Dear Addy, My new year’s resolution is to be a stronger advocate for the bleeding disorders community. How do I reach people and where can I find information to share? Signed, Want to Be the Change Dear Change, You came to the right place! HFA has several resources available for people to increase their awareness […]

Dear Addy: Giving Back

December 12, 2016

Dear Addy, I want to give back this holiday season, but I’m not sure how. Can you recommend ways to be more involved in my community? Signed, Inspired to Serve _____________________________________________________________________________________________________________________________________________________________ Dear Inspired, The holiday season is a good time to reflect on giving to a cause or serving those in need. There are many […]

Dear Addy: Formularies

November 28, 2016

Dear Addy, I keep hearing the terms formulary and preferred drug list. What do they mean and should I be worried if my current insurance plan has one? What about my friends that have Medicaid? Signed, Informed Consumer ____________________________________________________________________________________ Dear Consumer, A formulary is a list of prescriptions drugs that are covered by a particular […]

Dear Addy: Open Enrollment for New Users

November 14, 2016

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, First, an Open Enrollment Period is the time during the year when health insurance companies or HMOs (health maintenance organizations) are required by law to […]

Dear Addy: Joint Health

October 31, 2016

  Dear Addy, I’m 27 years old with severe hemophilia B. I’m caring for myself and my joints, including infusing to prevent bleeds as much as possible. As you know, with time, joints just can’t move as freely. Is there anything I can do? Do you recommend any exercises that can improve movement? Signed, Achy […]

Dear Addy: Project CALLS

October 17, 2016

Dear Addy, My insurance company is making it increasingly difficult to access the services and products I need to care for my bleeding disorder, which has led to delayed care. How can I report these issues? Signed, Frustrated __________________________________________________________________________________________________________________ Dear Frustrated, You are not alone in your concerns. In August 2015, HFA launched Project CALLS […]

Dear Addy: Carrier Testing

October 3, 2016

Dear Addy, Given our family history, my 8-year-old daughter could be a carrier of hemophilia. When should she get tested? Signed, Curious Carrier ____________________________________________________________________________________ Dear Curious Carrier, When to get tested is a personal decision, and you have a lot to consider. Importantly, consider that determining if your daughter is a carrier now could enhance […]

Dear Addy: Advocacy Presentation

September 19, 2016

Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don’t know where to start. Help! Signed, Anxious for an A   Dear […]

Dear Addy: Mental Health

September 5, 2016

Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]

Dear Addy: Back to School Secondary Education

August 22, 2016

  Dear Addy, My son is starting kindergarten this fall and I’m concerned about what will happen if he has a bleed at school. What are his rights at school and how do I ensure he has the same opportunities as other students? Sincerely, Proactive Parent ______________________________________________________________________________________________________________________________________________________________________________________________________________ Dear Proactive, With the new school year approaching, […]


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