Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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, […]
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 […]
The following is an excerpt from a press release from Genentech. Read the entire press release here. Genentech, a member of the Roche Group, announced that the U.S. Food and Drug Administration has approved Hemlibra庐(emicizumab-kxwh) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children, ages newborn and older, […]
El siguiente es un comunicado de prensa proporcionado por Genentech.聽 LA FDA APRUEBA HEMLIBRA庐聽DE GENENTECH (EMICIZUMAB-KXWH) PARA LA HEMOFILIA A SIN INHIBIDORES DE FACTOR VIII 鈥 El primer medicamento que reduce considerablemente la hemorragia tratada en comparaci贸n con la previa profilaxis de factor VIII basada en una comparaci贸n intrapaciente 鈥 鈥 脷nico medicamento que puede […]
Dear Addy, I watched a few of HFA鈥檚 PRIDE Project webinars. Can you explain to me how engaging in research will make me a better advocate? Signed, Curious about Research Dear Curious, It鈥檚 great to hear that you watched some of the PRIDE Project webinars, as those webinars provide an introduction to and basic training […]
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 […]
My boys went back to school聽this past week, and while I’m not exactly a pro, I have done this before. My youngest, Myles started first grade while my oldest, Zachary, began fifth聽grade. The first week of school is exhausting, overwhelming, and frustrating.聽It won’t be a picnic for a child with a bleeding disorder and a […]
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 […]
Dear Addy, My local organization is hosting a few events this fall and I鈥檇 like to invite our U.S. Representative to attend. How do I send them an invitation? Signed, Active Constituent Dear Constituent, This is a timely question, as mid-term elections are a few months away and members of the House of Representatives and […]
The following is an excerpt from a press release from Genentech. Read the press release in its entirety here.聽 Genentech, a member of the Roche Group, announced that pivotal data from the Phase III HAVEN 3 study, which evaluated HEMLIBRA庐聽prophylaxis administered every week or every two weeks in adults and adolescents aged 12 years or […]
The following is an excerpt from a press release from Bayer. Read the press release in its entirety here.聽 Bayer announced that the U.S. Food and Drug Administration has approved Jivi庐 for the routine prophylactic treatment of hemophilia A in previously-treated adults and adolescents 12 years of age or older. The initial recommended prophylactic regimen […]
Featured Stories: HFA, along with other patient groups, continues to argue against restrictive Medicaid eligibility policies. HFA has written before about a new federal policy that allows states to cut off Medicaid coverage for adults who don鈥檛 meet state work requirements. The US Centers for Medicare and Medicaid Services has so far approved work requirements […]
The Trump Administration issued a final rule on June 19, 2018 expanding association health plans. The rule鈥檚 stated aim is to 鈥渉elp Americans struggling to afford health coverage find new, more affordable options.鈥 You can read more about the rule聽here. HFA and many other patient advocacy groups think the final rule takes the wrong tack.聽Association […]
Dear Addy, I recently attended an event and learned about submitting issues with my insurance to HFA鈥檚 Project CALLS. However, I still have some questions about how CALLS works and what happens when I submit an issue. Can you explain the process? Signed, CALLS Quandary Dear Quandary, HFA created an infographic to answer this very […]
Next week, my 15-year-old son with severe hemophilia A will go back to school. Normally at this point in the summer, I鈥檝e done my due diligence by asking for his teachers鈥 names, ensured his schedule doesn鈥檛 have him running all over campus, and asking for a meeting with the powers that be to teach them […]
Earlier this summer we welcomed our summer policy and governmental relations interns to our D.C. office. Alexandra and Catherine are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Alexandra and Catherine: […]
On Aug. 7, 2018, the U.S. District Court in Delaware ruled against Shire in its request for a preliminary injunction against Roche AG from creating, transporting and marketing its recently-approved drug Hemlibra in the U.S., which received FDA approval to treat people with hemophilia A with inhibitors in 2017. This ruling means there are no […]
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 […]
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