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Copay Accumulator Adjustments: What Are They and How They Can Affect You
Advocacy & Legislation
…more people depend on copay assistance to afford their life-saving specialty medications. This video demonstrates how Copay Accumulator Adjustments affect patients requiring specialty medications with no generic alternatives. https://www.youtube.com/watch?v=7ExMnOJs-h8…
Let Your Voice Be Heard! Take the National HTC Patient Satisfaction Survey Today!
GLHF News, Health and Well Being, Living with a Bleeding Disorder
Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey! If you, or someone you care for, had contact with an HTC…
Black Men with Hemophilia Have a Shorter Life Expectancy than White Men
Health and Well Being, Men with Bleeding Disorders
…access to hemophilia clinical trials among minority groups, in addition to racial and ethnic differences in depression and quality of life among people with hemophilia. Here, she shares more about her research…
Why Donating Plasma is Essential for Research & Diagnostic Testing
Industry News & Research
…a bleeding disorder, you will need to donate in a special Source Plasma Licensed facility. These centers went through a rigorous process to obtain their licensing through the FDA. Laboratories,…
FDA Approves First-Ever Nonprescription Oral Contraceptive
Health and Well Being, Industry News & Research
The new approval will allow consumers to purchase this oral contraceptive medication without a prescription at stores and online. The U.S. Food and Drug Administration (FDA) has approved Opill (norgestrel),…
FDA Finalizes Blood Donor Eligibility Guidance
Industry News & Research
…end user. In advance comments on the revised guidance, APLUS commended FDA’s transition to an individual risk-based assessment; advocated for ongoing surveillance and data collection activities around donor eligibility; and urged continued…
FDA Finalizes Blood Donor Eligibility Guidance
Industry News & Research
…end user. In advance comments on the revised guidance, APLUS commended FDA’s transition to an individual risk-based assessment; advocated for ongoing surveillance and data collection activities around donor eligibility; and urged continued…
NHF Responds to STIMATE® Production Update
Industry News & Research
…blood disorders community — HFA, NHF, and the Hemophilia Alliance — are united in their concern about access to and availability of alternative treatments for patients who rely on desmopressin…
Patient Advocacy Organizations Release Blueprint to Protect Access to Care
Advocacy & Legislation, Industry News & Research
…“The 100 Days Agenda: A Patient-First Blueprint.” The Leukemia & Lymphoma Society American Lung Association Epilepsy Foundation American Cancer Society Cancer Action Network Muscular Dystrophy Association Cystic Fibrosis Foundation National…
Patient Advocacy Organizations Release Blueprint to Protect Access to Care
Advocacy & Legislation, Industry News & Research
…needed healthcare. The following organizations endorsed “The 100 Days Agenda: A Patient-First Blueprint.” The Leukemia & Lymphoma Society American Lung Association Epilepsy Foundation American Cancer Society Cancer Action Network Muscular…
FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Biomarin announced that they received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) on August 18th for their investigational hemophilia A gene therapy valoctocogene roxaparvovec….
Updates on Specialty Pharmacy Provider Services During COVID-19 Pandemic
COVID-19
…regular prophylaxis should be able to obtain a full month’s prescription refill for their prophylaxis regiment when their home quantity reaches at a minimum an estimated two week’s supply. During…
Supplemental MASAC Statement Regarding Home Delivery and Refill Under State of Emergency Declaration
COVID-19
…supplies are depleted. Having an adequate supply of these treatment products at home is critical to achieve safe patient care and continuity of treatment. Moreover, a national emergency or natural…
Supplemental MASAC Statement Regarding Home Delivery and Refill Under State of Emergency Declaration
COVID-19
…supplies are depleted. Having an adequate supply of these treatment products at home is critical to achieve safe patient care and continuity of treatment. Moreover, a national emergency or natural…
Region V-West/Northern States Regional Hemophilia Network
…Thrombosis & Hemostasis Network (ATHN), as well as the Health Resources Services Administration (HRSA). This means that GLHF is responsible for the administration, coordination and monitoring of activities and goals…
Common Questions About von Willebrand Disease (VWD)
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
…a fourth type, known as acquired VWD, that isn’t hereditary. This type found in adults comes after a diagnosis of an autoimmune disease — such as lupus — or from…
Bombardier Climbs the Seven Summits — Proving That with Support and Guidance, We Can All Achieve our Dreams
GLHF News
…North America, 20,310 feet · Carstensz Pyramid, Oceania, 16,024 feet · Mt. Everest, Asia, 29,029 feet · Mt. Vinson, Antarctica, 16,050 feet Chris thanks and credits Wolfgang Marguerre and Octapharma…
Alex Borstein Brings Star Power to Raise Awareness of VWD
Industry News & Research
…website, ThinkVWD.com, features two PSA’s featuring Ms. Borstein that takes a closer look at how bleeding disorders affect women. There is also a downloadable booklet that will allow women and girls…
Children’s Storybooks Provide Insight and Education for Kids with Hemophilia
Living with a Bleeding Disorder
…is the true story of Alexis, youngest child of Russia Tsar Nicholas II, and how his hemophilia influenced events leading to the Russian Revolution. (Ages 8 and older). Just a…
Five Ordinary Items That Are Unique to Our Hemophilia Home
Living with a Bleeding Disorder
…has severe hemophilia B and a seizure disorder. They have a young daughter and two other “babies” — a dog and a cat. Cza herself is diagnosed with ADHD and…
Legislation Restricting Accumulators and Maximizers Have No Impact on Premiums, According to a Global Health Living Foundation Analysis
Advocacy & Legislation, Industry News & Research
…and OOP payment requirements. Going as far back as 2014 and including the most recently available 2022-2023 data, the updated GHLF analysis and tool is for legislators, policymakers, and interested…
Wisconsin All Copays Count Coalition Gains Momentum, Addresses Challenges of Copay Accumulator Adjustors
Advocacy & Legislation, GLHF News, Industry News & Research
…analysis and their free interactive tool. To learn more about Copay Accumulator Adjustors and PBMs, visit our website. Source: All Copays Count Coalition, Coalition of Wisconsin Aging and Health Groups…
As Part of Medicaid “Unwinding,” Disenrollments Are Now Underway in about 40 States. Will You Lose Your Medicaid? Learn What You Can Do!
Health and Well Being, Industry News & Research
…including HFA had filed an amicus brief in the case and applauded the Court’s ruling. HFA joined with 15 patient groups in another amicus brief in Braidwood Management v. Becerra, litigation defending consumers’ rights to…
Accredited Gene Therapy Educational Opportunities Available Online Now
Industry News & Research
…hemophilia that affect immunity, efficacy, and safety. “Why Gene Therapy for Hemophilia? Exploring the Challenges of Current Therapies,” is a discussion about the current clinical challenges associated with the use…