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Regulatory Issues

HFA & NHF Discuss Bayer Recall with FDA

October 7, 2019

HFA and NHF are pleased to share a brief update with the community concerning a recent meeting we had with the FDA as well as a number of additional resources that the FDA provided after the call.聽 HFA and NHF will continue to update the bleeding disorders community as any further information develops. Please note […]

Washington Wire: June 2019

June 28, 2019

Featured Stories: HFA held a Patient Fly-in and Virtual Hill Day聽on June 10, 2019. Twenty-four community members from 14 different states came to Washington, D.C. to tell their lawmakers about living with bleeding disorders 鈥 and to explain what people in our community need in terms of quality, affordable health coverage. Fly-in participants also urged […]

Word From Washington: CMS Drops Proposal to Allow Medicare Plans to Limit Coverage of “Protected Class” Drugs

May 17, 2019

  The U.S. Centers for Medicare and Medicaid Services (CMS) released a final rule yesterday on drug pricing in the Medicare Advantage and Medicare Part D programs. In its final rule, CMS chose not聽to implement a harmful change that it had initially put forward 鈥 a change strongly opposed by HFA and numerous other patient […]

Washington Wire: January 2019

January 31, 2019

FEATURED STORY What to Watch in the States in 2019 鈥 State Medicaid Trends Legislative sessions have begun in all but four states (Alabama, Florida, Louisiana and Nevada begin sessions in the months ahead).聽 As lawmakers begin to tackle the numerous issues they need to address in the coming months, let鈥檚 look at what to […]

Washington Wire: November 2018

November 30, 2018

Featured stories: Healthcare was a driving issue for many voters in the 2018 mid-term elections. The results of the 2018 election are in and we now know that the 116th聽Congress will be a divided Congress 鈥 聽a Republican Senate and a Democratic House. Will the new Congress do anything to impact access to meaningful healthcare? […]

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 […]

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聽article聽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 […]

Update 2: Bioverativ Files Complaints Against CSL Behring’s Idelvion

July 19, 2017

As noted in our July 10, 2017 story, Bioverativ has filed complaints in the U.S. District Court for the District of Delaware and with the U.S. International Trade Commission alleging that Idelvion, a novel factor IX albumin fusion protein developed by CSL Behring, infringes upon three Bioverativ patents. HFA, in collaboration with the National Hemophilia […]

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 […]

Letter to FDA Commissioner Regarding Biosimiliar Safety & Approval Process

April 20, 2016

HFA is proud to be part of the Patients for Biologics Safety & Access (PBSA). PBSA is a coalition of 24 patient advocacy organizations dedicated to protecting patient access to safe and effective biologics. Together, this coalition represents millions of Americans who suffer from serious, life-threatening diseases that are difficult to diagnose and treat. As […]

2015 Summer Intern Recap

August 7, 2015

Earlier this summer we welcomed our summer policy & advocacy interns to our DC office. Adam and Matthew are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Adam and Matthew: Gained […]

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聽alongside an online聽Virtual Hill Day聽to gain support for bill聽HR 1600, The Patients鈥 Access to Treatment Act聽in the US House and Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and improving access to skilled […]

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 […]

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 […]

HFA ‘Champion Award’ Given to 4 Members of Congress

June 19, 2014

On June 18, 2014, we hosted a successful Hill Day in Washington, DC聽alongside an online Virtual Hill Day聽to gain support for bill HR 460, The Patients鈥 Access to Treatment Act聽in the US Senate, and other issues like聽the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

Dear Addy: Finding The Right Hematologist

June 9, 2014

Dear Addy, What skills and experience should I look for in a hematologist? My son was recently diagnosed with hemophilia and I鈥檓 willing to move to another city, so my son can get the best care possible. Signed, Diligent Patient _____________________ Dear Diligent, Most importantly you want to make sure that all of the hematologists […]

1983鈥擟DC Holds Summit on AIDS

March 17, 2014

In January 1983, the Centers for Disease Control gathered doctors, scientists, and representatives from the pharmacological industry and the bleeding disorders community in an attempt to find the means for halting the spread of AIDS. They were unable to arrive at a conclusion. During this meeting, Dr. Donald Francis of the CDC stood up, pounded […]

Dear Addy: Individual Mandate

January 27, 2014

Dear Addy, My daughter with von Willebrand disease has health insurance but I don鈥檛 have health insurance for myself. What will happen if I decide not to purchase any? Coverage Unsure ____________________________ Dear Unsure, The deadline to purchase insurance without facing a penalty is March 31, 2014. Because of the individual mandate under the Affordable […]

Dear Addy: Open Enrollment

November 26, 2013

Dear Addy, It is open health insurance enrollment time for my company. Do I still have to worry about qualifying for coverage because I have a pre-existing condition? Open Enrollment Jitters in Minnesota ___________________________ Dear Jitters, The cold in Minnesota should make you shake more than the issue of pre-existing conditions in 2014. Starting in […]

High-Cost ‘Specialty Tier’ Prescription Drugs Under Scrutiny in PA

November 19, 2013

If you have hemophilia, multiple sclerosis or any number of other hard-to-treat diseases, the cost of your medications alone could reach into six figures, depending on your insurance coverage. 鈥淚t鈥檚 roughly $15,000 a month, and from that I鈥檓 lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]

Maine to Allow Prescription-Drug Imports

October 9, 2013

AUGUSTA, Maine (Wall Street Journal) 鈥 The hunt for cheaper prescription drugs long has led consumers to reach beyond U.S. borders, but under a Maine law set to take effect Wednesday, their search now will have the state’s blessing. The law, the first of its kind, sanctions the direct purchase of mail-order drugs from some […]


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