News

Safeguarding an Essential Treatment for Heavy Periods – What Contraception Bans Would Mean for the Bleeding Disorders Community.
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
In June, when the Supreme Court overturned Roe v. Wade and ended the constitutional right to abortion, women’s health advocates around the…

CDC Public Health Webinar on Blood Disorders – GLHF’s Kaveh Shabtaie Featured
Advocacy & Legislation, GLHF News
The Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders offers an ongoing Public Health Webinar Series on Blood Disorders. The…

Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”
Advocacy & Legislation, Living with a Bleeding Disorder
The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…

Continued Conversation on the State of Access to Women’s Health Care
Advocacy & Legislation, Health and Well Being
Recent changes in access to women and girls’ health care are likely to have detrimental effects for the blood and bleeding disorders…

Open Enrollment for 2023 Health Insurance is Underway!
Advocacy & Legislation, Health and Well Being
Open enrollment for 2023 health insurance programs has started! The Hemophilia Federation of America (HFA) offers tips for navigating the open enrollment…

Be Your Own Advocate!
Advocacy & Legislation
Accessia Health (formerly PSI) is offering free webinars to help you learn to advocate for your insurance and health needs. Information covered…

NHF Calls on CMS to Address Copay Accumulator Adjustors in the 2024 Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
In early October, NHF joined members of The All Copays Count Coalition (ACCC), sending a letter signed by 73 leading patient advocacy and…

How Does the Supreme Court’s Ruling on the Reversal of Roe vs. Wade Impact the Bleeding Disorders Community?
Advocacy & Legislation
There are many questions regarding the affects the June Supreme Court decision could have on the bleeding disorders community – including genetic testing and…

The High Cost of Hemophilia
Advocacy & Legislation, Health and Well Being, Industry News & Research
Just one bleed in people with severe hemophilia A receiving prophylaxis has the potential to negatively affect health-related quality of life, and raise…

NHF Addresses Potential Contraception Bans
Advocacy & Legislation
A statement from the National Hemophilia Foundation. Abortion and contraception can both be critical components of an individual’s health care journey. However,…

Read the HFA’s Latest Legislative Updates – State of the States July 2022
Advocacy & Legislation
Read the Hemophila Federation of America’s (HFA) latest legislative update – State of the States, July 2022. This update includes information on…

NHF Responds to Roe v. Wade Reversal
Advocacy & Legislation
NHF Statement in Response to the June 24, 2022 Supreme Court Ruling “The National Hemophilia Foundation (NHF) is aware of today’s Supreme…

The Role of Pharmacy Benefits Managers (PBMs)
Advocacy & Legislation
Pharmacy benefits managers (PBMs) are middlemen that create and administer drug formularies on behalf of health insurers, self-insured employers, Medicaid, and other…

National Hemophilia Foundation “Starts the Conversation” During Bleeding Disorders Awareness Month, March 1-31
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
Awareness month campaign encourages the community to raise their voices and share what is most important and relevant to their conditions throughout…

Copay Accumulator Adjustor Programs (CAAP)
Advocacy & Legislation
Copay Accumulator Adjustor Programs (CAAPs) are a strategy used by insurers to redirect the value of manufacturer copay assistance – which is…

Co-pay Accumulator Policies Hurt Patients. There’s a Simple Solution.
Advocacy & Legislation
by: Kollet Koulianos and Amy NilesV This piece is a joint effort by Amy Niles, Executive Vice President at the PAN Foundation,…

The FDA’s Office of Patient Affairs Shares Highlights from 2021 Programs and Encourages you to Participate in their Upcoming 2022 Activities.
Advocacy & Legislation, COVID-19, Industry News & Research
The United States Food and Drug Administration’s Office of Patient Affairs is sharing recent highlights with the public from 2021 and is…

All Copays Count Coalition Statement on Draft 2023 CMS Notice of Benefit and Payment Parameters
Advocacy & Legislation, Industry News & Research
The latest breaking news from the All Copays Count Coalition. In response to additional rulemaking for the Centers for Medicare & Medicaid…

HFA Action Alert: Tell Congress to permanently secure enhanced Advance Premium Tax Credits passed in the American Rescue Plan Act.
Advocacy & Legislation
Join more than 30 community members from across the country who are holding virtual visits and calls with their senators and representatives…

Ask Your Elected Official to Make All Copays Count!
Advocacy & Legislation, Industry News & Research
The National Hemophilia Foundation helped spearhead new legislation that aims to support the more than 133 million Americans living with a chronic…

All Copays Count Coalition Applauds House Introduction of Help Ensure Lower Patient Copays Act
Advocacy & Legislation, Industry News & Research
Legislation Introduced by Representatives McEachin and Davis Would Eliminate Harmful and Misleading Health Plan Pricing Schemes and Protect Vulnerable Patients. The All…

NHF Responds: Gov. Whitmer Signs First Bill Repealing Tampon Tax, Drives Down Costs for Families
Advocacy & Legislation, Health and Well Being
Bill is part of two-bill bipartisan package that will repeal taxes on menstrual products. NHF Statement In Response to New Michigan Law: “The…

NHF Statement on HELP Copays Act
Advocacy & Legislation, Industry News & Research
NHF has led the All Copays Count Coalition in helping support HR 5801. The National Hemophilia Foundation applauds Congressional Representatives Donald McEachin…

Op-Ed Outlines the Value of Copay Assistance and the Challenges of Copay Accumulator Adjustment Programs
Advocacy & Legislation, GLHF News
A recent op-ed in the Milwaukee Journal Sentinel by Jim Turk, titled Why Wisconsin Lawmakers Need to Protect the Value of Copay…