Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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. […]
Dear Addy, I鈥檓 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聽Open Enrollment Period is a timeframe each year when health insurance plans or聽HMOs (health maintenance organizations)聽are required by law to accept applications […]
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 鈥減racticing medicine without a […]
This past May our family was invited to attend the HFA Patient Fly-In to Washington, DC. The patients and caregivers were briefed on the talking points the evening before our scheduled meetings with our Senators and Representatives. As you know, health care is a hot topic and there were many talking points that needed to […]
– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ —聽The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]
Dear Addy, I鈥檓 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鈥檙e having with your health insurance. You are not alone in your […]
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 […]
Our insurance provider changed at the beginning of this year.* We knew there would likely be some new hoops and apprehensively were preparing in the months prior to Jan. 1.聽 Thinking I was a savvy bleeding disorders mom getting ahead of a game, I knew this may require some extra work. So first thing on […]
Thomas has had his inhibitor for more than a decade, causing bleeds to be an unfortunate, but relatively routine, occurrence. We鈥檙e used to holiday bleeds, birthday bleeds, and random 鈥渨here did that come from鈥 bleeds. Be it crass or an obvious statement, bleeding happens, and we push forward. Through these tough times, we try to […]
Note: The following story was originally published by Kaiser Health News. By Julie Appleby Patients getting chemotherapy or other complex medications may have a sudden panic when shopping for health insurance: Their drugs often don鈥檛 appear to be covered. 鈥淧eople think, 鈥楯eez, what do I do now?鈥欌 said Anna Howard, policy principal at the American […]
On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽in the US House and Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]
Dear Addy, So I saw the question you recently answered about what counts towards a deductible.聽You didn鈥檛 talk about what counts towards out-of-pocket costs. Does every penny I spend on healthcare count towards my out-of-pocket costs limit? Signed, 聽Pocket Picky 聽Dear Picky, No, not every penny you spend on healthcare will count towards your annual […]
Dear Addy, I thought I hit my deductible total recently based on my receipts and explanation of benefits. My insurer says I haven鈥檛 and they have a different total of how much of my deductible is left. What is going on? 聽Signed, 聽Calculation Crazed ____________________ Dear Crazed, You will need to check your health insurance […]
Dear Addy, The specialty pharmacy that I have to use through my insurer doesn’t carry my preferred brand of factor so I have to go through the prior authorization process to get my factor. My hemophilia treatment center (HTC) does not have a 340B program but I know of another HTC that does and they […]
Dear Addy: It used to be when you left or lost your job you could get COBRA coverage until you found a new job. What is happening to COBRA with ACA implementation? What happens now if I lose my job and need health insurance? Sincerely, Daniel, Hemophilia Patient ___________________________________ Dear Daniel, If you lose your […]
Dear Addy: My factor is moving from the medical benefit to the pharmacy benefit in 2015 and I鈥檓 worried. What should I watch out for? From, Jermane, severe hemophilia B ______________________________________ Thanks for writing, Jermane. We are seeing many insurers around the country making this switch. In several instances, insurers are placing treatment products for […]
I love reading my horoscope. 聽A recent one read, 鈥淐ome to grips today with financial issues that need your attention. Pay bills, go over accounts, and definitely make a budget.鈥 For those of us living with bleeding disorders, that budget should include paying medical bills you hadn鈥檛 bargained for. It鈥檚 important to be prepared for […]
Dear Addy: I see that my out-of-pocket maximums have gone up this year to $6,600 for an individual and $13,200 for my family. How am I supposed to afford this? With one severe bleed, between hospital stay, medication, and follow-up visits, we could reach this limit within a single month. Sincerely, Sonya, Hemophilia A patient […]
This article originally appeared in the Wall Street Journal. To read it in its entirety, click here. ________________________________________ Title:聽Affordable Care Act Eases Concerns for One Family Date: December 25, 2014 By:聽Christopher Weaver Source:聽The Wall Street Journal Jaime Hood and her family were among the health law鈥檚 biggest winners in 2014. Ms. Hood said she enrolled […]
Dear Addy, 鈥淢y family and I are traveling out of state for the holidays. It is our first time traveling away from our hemophilia treatment center. Because of my son鈥檚 bleeding disorder we are concerned about insurance covering any emergency medical care he may need at an out of state hospital. How can I […]
[glossary_exclude] Dear Addy, I have heard from a friend that their hemophilia treatment center (HTC) is no longer 鈥渋n-network鈥 for their insurance plan but instead is 鈥渙ut-of-network.鈥 What does this mean and should I be worried about my insurance plan changing? 聽Signed, 聽Nervous Over Network _______________________ Dear Nervous, The term 鈥渙ut-of-network鈥 refers to those […]
Note: This article was updated on 11/10/2015 to reflect Open Enrollment dates for plans beginning in 2016.聽 Dear Addy, I am not happy with my current health insurance. My work told me that I can鈥檛 change my plan until the聽鈥淥pen Enrollment Period鈥 starts. What is an open enrollment period and why do I […]
On Monday, September 22, 聽members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]
Note: This article was updated on 11/10/2015 to reflect 2016 out of pocket maximum limits. Dear Addy, I鈥檓 a confused individual with private health insurance. I read that under the Affordable Care Act (ACA) the maximum annual out-of-pocket cost for health care is $6,850.00 for an individual. My insurance company is moving my factor […]
Dear Addy, I heard something about individual health insurance plans. What can these plans do? Are there lifetime caps? Are out-of-pocket maximums higher or lower? I am just wondering if I should add this kind of plan to my list as a potential option. Signed, Shopping for the Best Deal ________________________ Dear Best Deal, After […]
Dear Addy, Are there any guarantees that maximum-out-of-pocket expenses won鈥檛 continue to rise under the ACA? What, if anything, restricts such a rise? Signed, Not-So-Deep-Pockets __________________________ Dear Pockets, Maximum-out-of-pocket expenses are likely to continue to rise year-after-year. In fact, under the ACA, if the average cost of insurance premiums rises on a per person basis […]
Every year, Cora Higson fills out a sheaf of forms and waits several long, anxious days to learn whether a charity will pay for the drug she needs to breathe. The medication 鈥 Tracleer 鈥 is so essential, Higson says, that she is supposed to call her doctor immediately if she misses a dose. But […]
For the past 20 years, we have worked hard to make sure everyone with a bleeding disorders has access to affordable life-saving treatment. One of the ways we do this is to support legislation like the Patient鈥檚 Access to Treatment Act (HR 460). This bill would prohibit an insurance company from charging more for drugs […]
Once-Weekly Prophylaxis Treatment with BeneFIX庐 Significantly Reduced Annualized Bleeding Rate Compared to On-Demand Treatment _____________________________ Pfizer Inc.聽announced the positive results of a Phase 3 study comparing a prophylaxis regimen of BeneFIX庐 Coagulation Factor IX (Recombinant) 100 IU/kg once-weekly to on-demand treatment in people with moderately severe to severe hemophilia B. The top-line results of the […]
Last week, 聽members of the bleeding disorder community flew to Washington, DC to speak with their US House and Senate representatives asking them to support HR 460, the Patients鈥 Access to Treatment Act. This important piece of legislation prohibits insurance companies from charging more for the drugs that they place into specialty tiers, than they […]
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