Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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 […]
鈥淲atch out for my brother. He鈥檚 a bleeder,鈥 Logan will often say when we are at an interactive birthday party. Logan is Maddox鈥檚 5-year-old brother. He is extremely protective of him. Whenever we are at an event Logan will do his best to 鈥減rotect鈥 his little brother from anyone pushing him too hard or potentially […]
The following is an excerpt from a press release from Roche. Read it in its entirety here. Roche today announced that it has joined the World Federation of Hemophilia Humanitarian Aid Program, a landmark initiative leading the effort to change the lack of access to care and treatment for people with inherited bleeding disorders in […]
Caregiving is hard! Did I just state the obvious? I recently saw yet another article about caregivers, caregiver stress, caregiver burn out and the importance of self-care. You know, we鈥檝e all seen them. If you鈥檙e like me you may even roll your eyes when you think there are some people that need to be told […]
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 […]
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 […]
鈥淎 Drop of Blood鈥 Educating our Children 鈥淪ometimes I cut my finger, Sometimes I scrape my knee, Sometimes a drop or two of blood Comes dripping out of me. That means I lose some platelets, Some white cells and some red; I lose them by the millions In every drop I shed. But I don鈥檛 […]
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 […]
The following is an excerpt from a press release from Save One Life Inc. Read the press release in its entirety here.聽 Save One Life Inc. announces a new executive director. Save One Life is an international nonprofit that assists people with hemophilia in developing countries. Christopher G. Bombardier, famous for being the first person […]
The following is an excerpt from the Plasma Protein Therapeutics Association. Read the full press release here. The Board of Directors of the Plasma Protein Therapeutics Association announced Amy Efantis will be its next President and Chief Executive Officer effective Jan. 16, 2019. Having served most recently as Vice President, Global Public Policy & […]
When Thomas was much younger, we spent a lot of time in the hospital and as all moms know, keeping a toddler entertained for hours is challenging. I don鈥檛 think of him or myself as ancient, but this was pre-tablet days; I would actually haul a portable DVD player and a boxed set of […]
HFA does not recommend, endorse or make any representation about the efficacy, appropriateness or suitability of any specific products, treatments, or opinions. Please consult your physician before use of any treatments. We recently had Jackson鈥檚 six-month comprehensive visit at the hematologist. A comprehensive visit is an appointment in which many bleeding disorders specialists meet with […]
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 […]
鈥525,600 minutes鈥525,000 moments so dear.鈥澛 Just like the song from the musical 鈥淩ent,鈥 those 525,600 minutes go so quickly, and you feel as though in a blink of an eye the year is gone. As we see the finish line of another year, I can鈥檛 help but look back at 2018 with mixed emotions. […]
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. […]
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 […]
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 […]
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, 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 […]
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? […]
On Liam鈥檚 first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive.聽 Though I was nervous, I had spent a lot of […]
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. […]
November, is National Caregivers Month. It鈥檚 the one day a year, set aside to acknowledge those who volunteer to care for family members, friends and neighbors who are managing health challenges and other disabilities. Not all superheroes wear capes. Some are managing medications, organizing medical records, scheduling doctor鈥檚 appointments and some superheroes are just […]
My first baby was also my first baby with a bleeding disorder. My husband and I did not know this while he grew inside of my body. So instead of learning about factor products, ports, or how to keep him bleed free, I read about natural childbirth, how to make my own baby food, what […]
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 […]
The following is an excerpt from a press release from Genentech. Read the press release in its entirety here. Genentech has announced new data that will be presented at this year’s annual American Society of Hematology meeting held in San Diego from Dec. 1-4. Ten聽Genentech聽medicines will be featured in more than 70 abstracts, including […]
Featured stories: New HHS policy could diminish protections for people who depend on quality, affordable health insurance. On Oct. 22, the U.S. Department of Health and Human Services released new guidance spelling out how states can win approval to waive various Affordable Care Act requirements. This arcane new policy could seriously impact protections for patients […]
Dear Addy, I know that the Open Enrollment Period for health insurance is right around the corner. As a person with a bleeding disorder, what should I look for in an insurance plan? Signed, Savvy Subscriber Dear Subscriber, The聽Open Enrollment Period is a time frame each year when health insurance plans or聽HMOs (health maintenance organizations)聽are […]
About a year or so ago, I thought it would be a great idea for HFA to apply to be a Charity Partner for the Marine Corp Marathon in Washington, D.C.聽 When we were selected, I was beyond excited.聽 Running a marathon was on my bucket list.聽 I know, really clich茅, but true.聽 It was […]
You have decided to take the first step toward mental health care, but how do you get started? Luckily you have options and many people around who are eager to help. Most times, the initial step of reaching out are with the individuals and groups that you most trust, such as family, friends, physician, […]
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