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Affordable Care Act

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 […]

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 […]

Okay, So What Can We Do?

January 24, 2017

By Lori Long and Sarah Shinkman “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead To find an example of the type of group Margaret Mead speaks about in her famous quote, look no further than our bleeding disorders community. […]

Infusing Love: Now What?

January 18, 2017

  This week the Infusing Love Mom’s Blog will tackle a touchy subject: What happens to health care in 2017? Is there a replacement for the ACA that will offer support and protections? Whether your politics lay left, right, or center, as a community, we all live with having bleeding disorders in our lives and […]

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 […]

Open Enrollment For 2016 Is Here

November 18, 2015

Though Thanksgiving has yet to arrive, it is time to start making your list and checking it twice. No, not that list; the list of the things you need to make sure your health insurance plan covers when your open enrollment period starts. An open enrollment period is the time when individuals can enroll themselves […]

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: COBRA and the ACA

February 23, 2015

Dear Addy: It used to be when you left or lost your job you could get COBRA coverage until you found a new job. What is happening to COBRA with ACA implementation? What happens now if I lose my job and need health insurance? Sincerely, Daniel, Hemophilia Patient ___________________________________ Dear Daniel, If you lose your […]

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 […]

Affordable Care Act Eases Concerns for Family with Hemophilia

December 29, 2014

This article originally appeared in the Wall Street Journal. To read it in its entirety, click here. ________________________________________ Title: Affordable Care Act Eases Concerns for One Family Date: December 25, 2014 By: Christopher Weaver Source: The Wall Street Journal Jaime Hood and her family were among the health law’s biggest winners in 2014. Ms. Hood said she enrolled […]

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 […]

Dear Addy: Open Enrollment Period

September 27, 2014

  Note: This article was updated on 11/10/2015 to reflect Open Enrollment dates for plans beginning in 2016.    Dear Addy, I am not happy with my current health insurance. My work told me that I can’t change my plan until the “Open Enrollment Period” starts. What is an open enrollment period and why do I […]

Dear Addy: Max Out-of-Pocket

September 1, 2014

Note: This article was updated on 11/10/2015 to reflect 2016 out of pocket maximum limits.   Dear Addy, I’m a confused individual with private health insurance. I read that under the Affordable Care Act (ACA) the maximum annual out-of-pocket cost for health care is $6,850.00 for an individual. My insurance company is moving my factor […]

Dear Addy: Self-Insured Plans

August 4, 2014

Dear Addy, I heard something about individual health insurance plans. What can these plans do? Are there lifetime caps? Are out-of-pocket maximums higher or lower? I am just wondering if I should add this kind of plan to my list as a potential option. Signed, Shopping for the Best Deal ________________________ Dear Best Deal, After […]

Dear Addy: Maximum Out-of-Pocket Expenses

July 21, 2014

Dear Addy, Are there any guarantees that maximum-out-of-pocket expenses won’t continue to rise under the ACA? What, if anything, restricts such a rise? Signed, Not-So-Deep-Pockets __________________________ Dear Pockets, Maximum-out-of-pocket expenses are likely to continue to rise year-after-year. In fact, under the ACA, if the average cost of insurance premiums rises on a per person basis […]

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 alongside an online Virtual Hill Day to gain support for bill HR 460, The Patients’ Access to Treatment Act in the US Senate, and other issues like the ability for third-party non-profits to help make payments on behalf of patients, and funding for the Centers for […]

Dear Addy: Small Business Health Options Program (SHOP)

May 26, 2014

Dear Addy, I am a small business owner with fewer than 25 employees and I have a child with hemophilia. The private insurance I provide my employees has gotten very expensive. I don’t know if I can afford it any more. Can you let me know what options I have? I don’t want to stop […]

Dear Addy: Lifetime Caps vs. Annual Caps

April 20, 2014

                Dear Addy, I know “Obamacare” eliminated lifetime caps on January 1, 2014, but are there still annual caps on healthcare costs? Capped-Out __________________________________ Dear Capped-Out, Happily the answer is no, as of January 1, 2014. Actually, it was on September 23, 2010, that the Affordable Care Act […]

Dear Addy: Individual Mandate

January 27, 2014

Dear Addy, My daughter with von Willebrand disease has health insurance but I don’t 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: Washington Days

January 13, 2014

                Dear Addy, I am going to NHF’s Washington Days and I have an opportunity to speak with my Congress person about hemophilia issues. I am worried I don’t know enough and that my Congress person will not take me seriously. How do I prepare for this meeting? […]

Dear Addy: Marketplace Deadlines

December 23, 2013

Dear Readers, Thank you for all the questions you have asked since the launch of Dear Addy in July of this year. Please keep them coming! HFA wants you to be able to make informed decisions about your health and the health of your family. To close out the year, I want to follow-up on […]

Dear Addy: Pre-Existing Condition Insurance Plan

December 9, 2013

Dear Addy, I have a young child with substantial medical costs. For the past couple of years I have spent 20-40% of my income on medical bills. Unfortunately my income is “too high” for Medicaid. I live in Texas and I currently have PCIP (pre-existing condition insurance plan) insurance which ends this month. What do […]

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. “It’s roughly $15,000 a month, and from that I’m lucky to have good insurance so we have good co-pay structure, co-insurance,” said Nick Vizzoca, whose 13-year-old […]

Are You Prepared for the Healthcare Insurance Marketplace?

November 11, 2013

The countdown to the launch of the new online Health Insurance Marketplace is on. Are you ready? If you, like many Americans, have questions about what the Marketplace is and what it does, there are excellent resources available to help answer these questions. Here are some of the most frequently asked questions: “The Marketplace” The […]


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