Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
A subcutaneous, bi-specific antibody therapy becomes commercially available to those with hemophilia A and inhibitors. This product gets approval for hemophilia A patients a year later.
The National AIDS Memorial Grove unveils a dedicated area and memorial for the hemophilia community.
With a new Administration in place, Congress makes multiple attempts to dismantle the Affordable Care Act. In a floor speech, Senator Bernie Sanders asserts that the hemophilia community would be disproportionally impacted. These efforts fail and the ACA is left intact.
Opioid dependency increasingly becomes a topic of concern for the bleeding disorders community.
After 32 years of an FDA ban on blood donations from men who have sex with men (MSM), the FDA reconsiders and votes to continue the ban with a deferment period for MSM or their female partners for one year after last sexual contact.
The first recombinant product for von Willebrand Disease becomes commercially available. The first Factor X product becomes commercially available.
Extended half-life clotting factor VII and IX concentrates become commercially available.
After years of continued struggle with Hepatitis C, a new product becomes commercially available. Hepatitis C is no longer the leading cause of death in adult hemophiliacs in the US. The new product is hailed as a cure for Hepatitis C.
Continued improvements in and expansion of research, education, and conversation about von Willebrand Disease and women with bleeding disorders occurs.
The National Hemophilia Foundation in partnership with others launches My Life, Our Future, a project to genotype hemophilia patients and carriers.
Hepatitis C continues to devastate the bleeding disorders community and is the leading cause of death in adults with hemophilia. This is the defining issue for the adult bleeding disorders population; available treatments are difficult and often not effective.
A product for Factor XIII deficiency becomes commercially available.
The Affordable Care Act (ACA) passes and is signed into law by President Barack Obama. The ACA addresses lifetime caps, pre-existing conditions, out-of-pocket expenses, young adult coverage, and other needs important to people with bleeding disorders.
The passage of the Affordable Care Act in 2010 assures those living with bleeding disorders cannot be denied for pre- existing conditions and that most plans eliminate lifetime cap issues. Increased research and awareness is conducted for women with bleeding disorders and von Willebrand disease. Future treatment includes the development…
A product for those with Factor I deficiency becomes commercially available.
President George W. Bush signs into law the Genetic Information Nondiscrimination Act (GINA) to protect Americans against discrimination based on their genetic information when it comes to health insurance and employment.
Lifetime caps are continuing but growing concern in the hemophilia community, especially for inhibitor patients. This issue will later inform decisions around the Affordable Care Act.
Dr. Marilyn Manco-Johnson et al., publish a multi-year study showing a prophylactic regimen of treatment prevents joint damage in pediatric patients in the New England Journal of Medicine.
Although about 30% of Hemophilia A and 2-3% of Hemophilia B patients will form an inhibitor and have been of concern since clotting factor was discovered in the 1960鈥檚, resources and education about this complication had been scarce. Education and outreach increase for inhibitor families in the mid- 2000鈥檚.
Attention is now given to other rare bleeding disorders, the newly diagnosed, women, people of color, and those living in rural areas.
Recombinant Factor VIII product shortages instill concern about the supply of necessary clotting factor concentrates.
The hemophilia community sees a resurgence in families coming together through camps, local, and national meetings. The term, 鈥渉emophilia鈥 begins to be replaced by the term 鈥渂leeding disorders鈥 to acknowledge all bleeding conditions. Treatment costs continue to rank among the most expensive chronic conditions. The financial impact continues to burden…
The hemophilia community between the HIV/AIDS-era families, and post- heat treated, and recombinant factor using families slowly began to heal. The financial burden of living with hemophilia was felt in lifetime caps and out-of-pocket expenses. In 2007, the Joint Outcome Study was released showing that prophylactic treatment is favorable to…
After tireless efforts, President Clinton signs the Ricky Ray Hemophilia Relief Fund Act of 1998 on November 12, 1998.
As a result of the community鈥檚 tireless grassroots efforts, Congress begins to show support for those affected.
Frequent updates and information to the community are being sent regarding the status of the Ricky Ray Hemophilia Relief Fund Act.
After the IOM report and many attempts at class action suits, victims and their families gain traction in holding the pharmaceutical companies accountable for infected clotting factor products.
The negotiations of the settlement bring up painful questions for patients and families.
While other countries are finalizing settlements by 1996, negotiations in the US continue due to years of stalled litigation.
The financial burden of lost loved ones is felt by their families.
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