Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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 […]
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 […]
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 […]
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? […]
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 […]
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 recently enrolled in Medicare and I got a notice that open enrollment for 2019 is coming up. What do I need to know about choosing my plan for the coming year? Signed, Medicare Madness Dear Medicare Madness, You are right: Medicare open enrollment for 2019 is fast approaching! The open enrollment period […]
As we鈥檝e previously reported, several lawsuits are currently pending in federal courts concerning aspects of the Affordable Care Act. One lawsuit questions whether the ACA is still valid, despite the elimination of the individual mandate penalty; other cases take an opposite tack, challenging recent Administration actions and rulemakings as inconsistent with the ACA. Today, HFA […]
Featured Stories: As November draws near, #DefendPreEx remains in the spotlight. We have written before about聽Texas v. United States, a lawsuit that seeks to overturn the Affordable Care Act鈥檚 protections for patients with pre-existing conditions. In September, the federal court with jurisdiction over the case held a hearing to consider the parties鈥 arguments. At issue […]
Dear Addy, With the midterm election fast approaching, does HFA have any tools to assist voters? I鈥檇 like to see who the candidates are in my district and state and where they stand on access to healthcare for the bleeding disorders community. Signed, Informed Voter Dear Voter, This is a great and timely question with […]
We鈥檝e been lucky enough to have Maddox home with us since he was diagnosed at 6 months old. My husband works nights, so he watches him during the day. We pulled him from daycare at 6 months because we were worried about other kids throwing things at him, and potentially him making the wrong move […]
Genentech has announced a new web portal for patients and caregivers intended to provide timely and accurate information on targeted serious adverse events of interest for HEMLIBRA. Visit the safety website:聽http://www.emipatientinfo.com/. Earlier this year, Genentech launched a similar site specifically for health care providers. In announcing the launch, Genentech stated 鈥淭his website is meant to […]
The following is an excerpt from a press release from uniQure. Read the press release in its entirety here.聽 uniQure, a leading gene therapy company advancing transformative therapies for patients with severe unmet medical needs, announced it has treated the first patient in its Phase IIb dose-confirmation study of AMT-061, an investigational AAV5-based gene therapy […]
The following is an excerpt from a press release from Spark Therapeutics. Read the press release in its entirety here. Investigational SPK-8011 moving to Phase 3 As of the July 13 data cutoff, 12 participants in the Phase 1/2 trial have received a single administration of investigational SPK-8011, including two at a dose of 5×1011 […]
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 […]
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 […]
The past week has seen a flurry of news on the ACA front. We鈥檝e summarized some of the latest developments for you here. On July 10, the US Centers for Medicare and Medicaid announced it will further聽reduce funding for navigators.聽Navigators are individuals or organizations that are trained to help Americans buy insurance in the ACA […]
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, 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, 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 […]
When Scarlett was diagnosed with platelet storage pool disorder in 2011 the doctors told me she wouldn’t be able to play most sports. As she went from toddlerhood to adolescence the restrictions seemed endless and it felt like she was never going to find any after school activities that she would enjoy. It was obvious […]
HFA was informed by Genentech on March 26, 2018,聽that聽a聽total of five聽patient deaths have聽occurred聽while聽the patients were聽using聽Hemlibra聽(emicizumab-kxwh).聽Genentech has little information that they can presently share聽about the circumstances聽surrounding the聽most recent聽patient聽deaths; however, Genentech could confirm that the patients聽had received聽Hemlibra聽as part of聽compassionate use and聽expanded patient access. Genentech has a聽Medical Communications line聽at聽1(800)-821-8590聽for patients, concerned community members, and healthcare providers聽who聽seek further information. […]
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 […]
My family has very quiet about our family history with hemophilia. I was 2 years old when my grandfather passed away, so I knew very little about what he went through or what it meant to be a carrier, other than the result could be having a son with hemophilia. I was excited when we […]
Disclaimer: At HFA, we value all opinions. This blog only reflects only the opinion and experiences of the individual mother/writer. We encourage you to talk with your children about a school safety plan, and have provided a resource at the end of this blog entry. ________________________________________ Around 11 AM, on April 20, 1999, in Littleton, […]
Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the […]
The following is an excerpt from an article in Medical News Bulletin. Read the full article here. Researchers at Spark Therapeutics and Pfizer tested the safety and efficacy of a new hemophilia gene therapy vector for the treatment of hemophilia B. The body鈥檚 ability to stop bleeding and repair damaged blood vessels depends heavily upon […]
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