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Washington Wire: October 2018

October 30, 2018

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 […]

Word from Washington: HFA Joins Amicus Brief in Legal Challenge to Short-Term Health Insurance Rule

October 8, 2018

As we’ve 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 […]

HFA and NHF Following Developments in Ryan White HIV/AIDS Program in Response to Magazine Article

July 20, 2018

  Many in our community have questions about a recent Slate magazine article that reported that the U.S. Department of Health and Human Services is reallocating money from the Ryan White HIV/AIDS Program to help defray costs of the U.S. Office of Refugee Resettlement as a result of current immigration policy. The Ryan White Program, named for […]

HFA RECOGNIZES CONGRESSIONAL REPRESENTATIVES AS 2018 CHAMPIONS

June 12, 2018

On June 12,2018, we hosted our 5th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. . With that in mind, patient representatives asked Senators and Representatives to protect affordable coverage for people with pre-existing conditions, ensure that insurance plans provide meaningful coverage and an appropriate scope of health benefits; protect people against potentially […]

Bleeding Disorders Organizations Introduces Joint Statement Supporting Bi-partisan Alexander-Murray Legislation

October 25, 2017

Click here for the combined issue statement from the Coalition for Hemophilia B, the Hemophilia Federation of America, the National Hemophilia Foundation and the Hemophilia Alliance supporting bi-partisan Alexander-Murray Legislation. (Full text available in pdf and below) People with Hemophilia and Other Bleeding Disorders Urge their Senators to Support Alexander-Murray Market Stabilization Legislation Senators Lamar Alexander […]

ACTION ALERT: Graham-Cassidy-Heller-Johnson bill

September 19, 2017

Your access to healthcare is at risk. The Senate is currently considering another bill to repeal the Affordable Care Act (ACA), sponsored by Sens. Cassidy and Graham. Congress only has until September 30th to act on this measure. We must work together to defeat this bill. Why should you take action? The Graham-Cassidy legislation would harm […]

Infusing Love: Knowing How and When to Advocate

August 17, 2017

This past May our family was invited to attend the HFA Patient Fly-In to Washington, DC. The patients and caregivers were briefed on the talking points the evening before our scheduled meetings with our Senators and Representatives. As you know, health care is a hot topic and there were many talking points that needed to […]

Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

August 15, 2017

– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ — The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with […]

ACTION ALERT: Vote Likely on Tuesday, July 25!

July 24, 2017

On Tuesday, the Senate will likely vote on a “Motion to Proceed,” which is the first step to open debate on health reform legislation.  If the motion passes, they may consider a 2015 bill that will repeal parts of the Affordable Care Act without replacing it, or the Better Care Reconciliation Act (BCRA), the recent […]

ACTION ALERT: July 17, 2017 Update on BCRA

July 17, 2017

A vote on the health care bill will happen soon, and our organizations need you to take action. On July 13, 2017, the Senate released another “discussion draft” of the BCRA. Despite promises from numerous lawmakers to change the bill, the latest iteration of the bill actually decreases protections for those with pre-existing conditions. The […]

Bleeding Disorders Organizations Urge Senators to Vote No on Better Care Reconciliation Act

June 29, 2017

  For the past few days, our organizations have been encouraging you to call, tweet and email your Senators to vote No on the Better Care Reconciliation Act (BCRA).  On June 27th, Senate Majority Leader Mitch McConnell delayed the Senate vote on the bill but the vote could occur quickly if Leader McConnell is able […]

ACTION ALERT: Ask Your Senators to Vote NO on BCRA!

June 26, 2017

On Thursday, June 22, 2017, the Senate leadership released a “discussion draft” of its version of legislation to repeal the Affordable Care Act (ACA). Despite promises from numerous lawmakers, the Senate bill in fact builds off the much criticized, House-passed American Health Care Act (AHCA). The Senate discussion draft would, among other things: Undermine protections for […]

HFA Honors Congressional Representatives as Champions for Chronic Illness

May 24, 2017

On May 24, 2017, we hosted our 4th Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day. As they consider HR 1628, the American Health Care Act (AHCA), the Senate has indicated that they intend to start from scratch on health reform and they need to hear from their constituents when crafting their plan. […]

Bleeding Disorders Advocates Host Patient Fly-In

May 23, 2017

  Washington, DC– Tomorrow, Hemophilia Federation of America (HFA) is hosting a Patient Fly-In and Virtual Hill Day for the bleeding disorders community. As questions surrounding health reform move to the Senate, patients will meet with their Senators, ensuring that their needs are represented. Patients will also participate in a Virtual Hill Day by calling, […]

Millennials Get Busy- Advocacy for Young Adults

January 26, 2017

By Sarah Shinkman Learning how to advocate is an important life skill at any age. Whether you are practicing personal, peer, or group advocacy, you have the power to influence decisions that may affect you and others. HFA’s final Young Adult Hangout of 2016 featured two community advocates and a health insurance overview by Erin […]

We Are Always Here For You

November 9, 2016

Dear Advocate: After yesterday’s election, there are many questions for the bleeding disorders community. While we don’t have all of the answers, we understand the concerns many have. No matter what your politics are, know that HFA is there for YOU — the bleeding disorders community. We offer you our reassurance that we will continue to […]

Dear Addy: Advocacy in Rural Communities

July 11, 2016

Dear Addy, I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor’s office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]

Intern Introspective: Through Our Eyes

July 1, 2016

Earlier this summer, we introduced you to Eric and Camila, our summer Policy Interns. They have been busy all over DC, attending Congressional hearings, executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 3nd Annual Patient Fly-In. Below is their take on the week. _________________________________________________________________________________ What was […]

New Patient Advocacy Coalition Leads the ‘Next Generation of Health Care Reform’

December 3, 2015

HFA recently became a charter member of Partners for Better Care (PBC), a nonpartisan coalition of patients and patient groups that seeks to improve access to quality medical care. The following is a press release from PBC about this partnership. Patient advocacy groups announced on Thursday, December 3, the launch of Partners for Better Care (PBC), a nonpartisan coalition beginning with over 10 […]

Dear Addy: CHOICE

July 29, 2015

Dear Addy, I keep seeing all of these Facebook posts and Tweets about the CHOICE Project. What is it and why does it matter if I take part? Signed, Need-to-Know Dear Need-to-Know, Glad you asked. CHOICE (Community Having Opportunity to Influence Care Equity) is a project driven by HFA and supported by the Centers for […]

Supreme Court Upholds ACA Subsidies

June 25, 2015

We’re pleased today to learn that the Supreme Court of the United States, in a 6-3 decision, upheld the subsidies provided under the Patient Protection and Affordable Care Act (ACA). These tax subsidies have allowed so many in our community to afford the care they need to treat their ‪bleeding disorders, and we are confident that these […]

HFA Champion Award Given to 4 Members of Congress

June 18, 2015

On June 17, 2015, we hosted our 2nd Annual Patient Fly-In in Washington, DC alongside an online Virtual Hill Day to gain support for bill HR 1600, The Patients’ Access to Treatment Act in the US House and Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

Dear Addy: Step Therapy

May 5, 2015

Dear Addy, I heard that my friend on Medicaid is being forced to try step therapy and use one product for three months before going back to the product he likes. Is this going to happen more often? Signed, Product Paranoid Dear Paranoid, It is possible. Step therapy is a process managed care insurers use […]

Gilead’s $1,000 HCV Pill Is Hard for States to Swallow

April 8, 2015

Note: This story was originally published by Joseph Walker, Wall Street Journal reporter, on April 8, 2015. To see the original post, click here. ____________________ A pricey pill made by Gilead Sciences Inc. caused Medicaid spending on hepatitis C treatments to soar last year, even as most states restricted access to the drug, leaving many low-income patients untreated. State […]

Dear Addy: Medical Benefit vs. Pharmacy Benefit

February 9, 2015

Dear Addy: My factor is moving from the medical benefit to the pharmacy benefit in 2015 and I’m worried. What should I watch out for? From, Jermane, severe hemophilia B ______________________________________ Thanks for writing, Jermane. We are seeing many insurers around the country making this switch. In several instances, insurers are placing treatment products for […]

Project RED: The Sequel

February 3, 2015

NOTE: This is the second of a two-part story. Click here to read Part I. Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED). CAWG listens to stories from across the bleeding disorders community […]

FDA approves Viekira Pak to treat Hepatitis C

January 5, 2015

The U.S. Food and Drug Administration today approved Viekira Pak (ombitasvir, paritaprevir and ritonavir tablets co-packaged with dasabuvir tablets) to treat patients with chronic hepatitis C virus (HCV) genotype 1 infection, including those with a type of advanced liver disease called cirrhosis. Hepatitis C is a viral disease that causes inflammation of the liver that […]

FDA Makes Statement on MSM Blood Donor Deferral Policy

December 23, 2014

Today, Commissioner Margaret A. Hamburg of the Food and Drug Administration (FDA) set forth a recommendation to change the current MSM blood donation policy. The current policy, set forth in the height of the AIDS crisis of the 1980s, forbade men who have had sex with men since 1977 from donating blood. The new policy […]

Consumer Guide To The Supreme Court’s 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’s important to millions of people who receive subsidies to help purchase coverage under the health-care law. Friday’s decision follows earlier action in July when two U.S. appeals courts issued conflicting rulings on the issue. Kaiser Health News, Mary […]

The Silent “Carriers” of Hemophilia

November 13, 2014

Women have been the silent “carriers” 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’s Blood Sisterhood program was established […]


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