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Consumer Guide To The Supreme Court鈥檚 Action On ACA Subsidy Issue

November 13, 2014

The Supreme Court on Friday, November 7, 2014 agreed to hear a case on a subject that鈥檚 important to millions of people who receive subsidies to help purchase coverage under the health-care law. Friday鈥檚 decision follows earlier action in July when two U.S. appeals courts issued conflicting rulings on the issue. Kaiser Health News, Mary […]

The Silent 鈥淐arriers鈥 of Hemophilia

November 13, 2014

Women have been the silent 鈥渃arriers鈥 of hemophilia and lived with other undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder. HFA鈥檚 Blood Sisterhood program was established […]

Dear Addy: In-Network

November 11, 2014

[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 […]

Are you Ready for Open Enrollment?

November 5, 2014

[glossary_exclude]Summer is over and already it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves and […]

Dear Addy: Privacy Protection

October 14, 2014

Dear Addy, I rarely attend bleeding disorder related events because I want to protect my privacy. When I do attend it seems like every time I turn around people try to get me to complete a survey. Why is that? How can I protect my privacy? ~Under the Radar _______________________ Dear UR, Some companies, organizations, […]

FDA Approves First Combination Pill to Treat Hepatitis C

October 10, 2014

The U.S. Food and Drug Administration today approved Harvoni (ledipasvir and sofosbuvir) to treat chronic hepatitis C virus (HCV) genotype 1 infection. Harvoni is the first combination pill approved to treat chronic HCV genotype 1 infection. It is also the first approved regimen that does not require administration with interferon or ribavirin, two FDA-approved drugs […]

New Study Findings on Young Women and Bleeding Disorders

October 9, 2014

[glossary_exclude] This information was originally sent by the Division of Blood Disorders in the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in an email on Wednesday, October 8, 2014.[/glossary_exclude] ____________________________________ Information about bleeding disorders is vital for young women. It can help them recognize […]

Brighter Outlook for Community Members Affected by HCV

October 8, 2014

Hepatitis C (HCV), often referred to as the 鈥渟ilent killer鈥, has been a serious crisis for the bleeding disorders community, who contracted the disease from contaminated blood products prior to the early 1990s. Treatments exist, but with many difficult side effects and mediocre efficacy. However, advocacy in the bleeding disorders community has contributed to the […]

Update #1: Study Suggests Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

October 6, 2014

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe Hemophilia A that are using Kogenate/Helixate (Bayer/Nexgen). Click here to read the […]

Dear Addy: Choice in Health Care

September 30, 2014

Dear Addy, I am frustrated because my insurance company has mandated that its members use a single pharmacy provider. What can be done to stop this denial of choice? Signed, Pharmacy Frustrated< ________________________________________________ Dear Frustrated, Health insurance providers are making this change as a cost savings measure. In order to keep their costs down, and […]

Dear Addy: Open Enrollment Period

September 27, 2014

  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 […]

An Inhibitor Mom Shares Her Story With the FDA

September 25, 2014

On Monday, September 22, several 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.聽Patients and advocates of every age, every background, and with several different conditions came out […]

HFA Policy & Advocacy Intern Synopsis

September 24, 2014

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Lewis and Maria are part of the bleeding disorders community and were chosen to participate in a 8 week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Lewis and Maria […]

FDA Hosts Patient-Focused Meeting

September 23, 2014

  On Monday, September 22,聽several 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.聽Patients and advocates of every age, every background, and with several different conditions came out […]

Leveling with the FDA About Hemophilia Inhibitors

September 23, 2014

On Monday, September 22, several members of the bleeding disorders community came out to聽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.聽Patients and advocates of every age, every background, and with several different conditions came out to […]

HFA’s Excutive Director to FDA: Treatment is Not One Size Fits All

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Adult Male Disccuses Pain Management and Treatment with FDA

September 23, 2014

On Monday, September 22,聽several members of the bleeding disorders community came out to聽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.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Adult Man Shares Seven Decades of Hemophilia Treatment with the FDA

September 23, 2014

On Monday, September 22, members of the bleeding disorders community came out to聽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.聽Patients and advocates of every age, every background, and with several different conditions came out to share […]

Blood Brother Shares Hemophilia Treatment Experiences With FDA

September 23, 2014

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 […]

Dear Addy: Max Out-of-Pocket

September 1, 2014

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: Back To School

August 18, 2014

Dear Addy, We moved to a new state for my job. What is the best way to explain my son鈥檚 hemophilia to the school? I am worried about how to handle teaching the school about his hemophilia. I want them to know how they can support and help him to prevent bleeds and I want […]

Dear Addy: Self-Insured Plans

August 4, 2014

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 […]

HFA Interns Tour MD Plasma Center

July 31, 2014

Recently our summer policy interns, Maria and Lewis, toured a Maryland plasma collection facility to learn the聽multi-step testing and purification process to ensure its safety and efficiency. ______________________________________ 1) Was this your first time visiting a plasma center? What did you expect it to be like? Lewis: This was my first time visiting a plasma […]

Boston Globe: Help For Patients with Chronic Diseases

July 24, 2014

Receiving a diagnosis for a chronic disease whether for yourself or your child can be devastating and confusing. When my son was diagnosed with hemophilia, he was just days old. I often think back to those first days and distinctly remember a conversation with a nurse, who would go on to become a long-term caregiver […]

Dear Addy: Maximum Out-of-Pocket Expenses

July 21, 2014

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 […]

Boston Globe: Specialty Drugs Transform Lives 鈥 But At a Cost

July 21, 2014

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 […]

HR 460 Change.org Petition

July 18, 2014

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 […]

Dear Addy: Veteran鈥檚 Health Care

July 7, 2014

Dear Addy, Will the ACA [Affordable Care Act] affect military insurance for active duty and retirees? Signed, A Curious Veteran ___________________________ Dear Veteran, The ACA will not affect active duty military or veterans who are enrolled in either TRICARE or the Veteran鈥檚 health care program. If you are not enrolled in TRICARE or the Veteran鈥檚 […]

How Our Interns Saw The HFA Hill Day

June 26, 2014

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 […]

Bayer to Develop Hemophilia Gene Therapy Treatment

June 23, 2014

Dimension Therapeutics, a Cambridge biotechnology startup, has struck a deal worth up to $252 million with the pharmaceutical giant Bayer HealthCare to develop a gene therapy to treat hemophilia, a rare disease that prevents blood from clotting. The goal of the prospective treatment, which is not yet in clinical trials, is to repair a faulty […]


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