GLHF Headline News


Year End Congressional Policy Issues - What You Can Expect

Congress faces a daunting to-do list before the end of the year, with a number of important policy issues that directly affect the bleeding disorders community including the Tax Reform Bill, that was just passed by the Senate, and Affordable Care Act (ACA, otherwise known as Obamacare) Market Stabilization. There's still time to contact your Senators and Representatives about these issues! Stay engaged. Click here for contact information.

Tax Reform

The Tax Reform Bill was passed by the Senate and is expected to reach President Trump's desk as soon as December 25. Tax reform affects more than just the tax code. It includes several provisions that dramatically impact people with bleeding disorders including: repeal of the Individual Mandate; repeal of the Orphan Drug Tax Credit; repeal of the Medical Expenses Deduction; and an increase of the Standard Deduction. For more information about how this bill may impact you, click here.

ACA Market Stabilization 

Some members in Congress want additional policies that stabilize health insurance markets to be included in the end-of-year package. This is particularly important because the final Tax Reform Bill includes a repeal of the Individual Mandate. Visit the advocacy section of NHF's website for more information about how ACA Market Stabilization impacts you.

Although tax reform and ACA Market Stabilization heavily impact the bleeding disorders community, a number of additional policy issues could have a direct impact on people and families living with a bleeding disorder, either directly or indirectly. Those include authorization for the Children's Health Insurance Program (CHIP) (click here to see how Wisconsin could be impacted) and a federal funding/appropriations bill. Find out how these and other policy issues could impact you! 

Part of GLHF's mission is to advocate for the bleeding disorders community. In these uncertain times, we need your voice more than ever! Are you interested in sharing your story and representing the bleeding disorders community? Do you have a desire to help drive our advocacy mission forward? If this sounds like you, please contact us to get involved!

To learn more about our Advocacy Committee, visit GLHF's website or call Karin at 414.937.6782 or Email: 

Please read about GLHF's Wisconsin Legislative Day in the article below. Wisconsin Legislative Day is on February 28 in Madison.





Potbelly Gives Back!

The Potbelly Sandwich Shop in Oak Creek has raised nearly $1,000 for GLHF by designating 25% of its net sales on several fundraising dates. Local organizations like Potbelly help raise community awareness and visibility for the bleeding disorder community - and for that we are thankful!

According to Chris Fairchild, General Manager, developing connections and community partnerships is something that Potbelly has always strived to do. "Being a good neighbor is about helping each other out. I feel that our fundraising program does just that. We have wonderful people in Oak Creek who are doing amazing things. Anything we can do to help just makes our day better!"

Chris shared that individual stores can choose what organizations they fundraise for, but that it's typically due to some type of connection. When asked if they had any ties to the bleeding disorders community Chris answered with a resounding, "Yes! I became aware of GLHF through a fellow employee whose son has a bleeding disorder. When he mentioned it to me, along with the cost associated with treating his son's disorder, I knew we had to help in whatever way we could." 

GLHF thanks Potbelly and its employees for their generosity!

Milwaukee's Best Bloody is February 25

Tickets on Sale Monday, January 8

GLHF's 6th Annual Milwaukee's Best Bloody will be held February 25 at the Italian Community Center from 11:30 a.m. to 3 p.m.

"Once again we are expecting a record turn-out. We know that this year's event will sell out very fast," said Jess Kveen, GLHF's Special Events Coordinator. "It's by far one of our most popular events and raises crucial funds for the bleeding disorders community." 

Last year, GLHF's signature event attracted more than 900 Bloody Mary connoisseurs and raised nearly $85,000! 

Milwaukee bartenders will showcase their signature Bloody Mary recipes while competing for the title of "Milwaukee's Best Bloody" in a friendly competition.

Ticket Information

Tickets on Sale: January 8
Cost: $40
Early Bird Tickets: $35 through February 9

For more information, including VIP and Six Pack ticket options, visit our website. You can also visit Milwaukee's Best Bloody Facebook Event Page, and follow us on Instagram and Twitter @WIBloodDisorder.

New in 2018: Our unique and incredibly successful signature event is expanding to Madison, WI! Watch our website, Facebook page, Twitter and Instagram accounts for information in the coming weeks.

Join GLHF for Wisconsin Legislative Day on February 28 in Madison

Meet with your state legislators and representatives to share your story and educate them about how healthcare policy issues affect you. 

Watch our website for registration information.

Once again, GLHF will be hosting the 2018 Wisconsin Legislative Day in our beautiful state capital! You can make a difference by sharing your story about living with a bleeding disorder with state legislators and representatives. Your stories provide them with the education they need when considering legislation. 

Camp Klotty Pine is July 9-14

Camp Klotty Pine, a week-long summer camp for children with bleeding disorders ages 7-15 years, will be held July 9-14 in Wautoma, WI. Children receive the education, training, and life skills necessary to manage their disorder independently. They also develop confidence and independence, while building life-long friendships and memories as they participate in traditional camp activities. 

"Watch" camp unfold in our new camp video!

Mark Your Calendar! Washington Days is March 7-9 in Washington, D.C. 

A Movement for the Bleeding Disorders Community!

The National Hemophilia Foundation (NHF) will host their annual Washington Days advocacy event March 7-9 on Capitol Hill in Washington, D.C. NHF's Washington Days is an opportunity for people affected by bleeding disorders to advocate for issues that are important to them. Last year, Washington Days attracted more than 500 volunteer advocates from 47 states that met with legislators and staff to discuss maintaining key patient protections in the Affordable Care Act (ACA, otherwise known as Obamacare).

The hotel for 2018 Washington Days lodging and trainings will be the Hyatt Regency at Capitol Hill, 400 New Jersey Ave. NW, Washington, D.C., 20001.


Interested in attending? GLHF will provide limited scholarships for Washington Days.

Send us a short, one to two paragraph essay telling us your story about living with a bleeding disorder; why you would like to attend; who may be attending; and how what you learn will help GLHF educate others. GLHF may send you to Washington, D.C. to meet with your legislators! 

Applications are due by January 12. Please send to GLHF's Executive Director, Danielle Leitner Baxter, at

To register for 2018 Washington Days, click here.

For highlights from 2017 Washington Days, check out NHF's news story.

For NHF's Washington Days Frequently Asked Questions, click here.

For any other questions or concerns, please contact:

Murky Waters: Dealing with Uncertainty in Healthcare

by: Michael Bradley

Source: PEN's Insurance Pulse

Uncertainty is a normal daily event for most of us. We wake up every morning not knowing what mood we'll be in, how bad the traffic will be, what the weather will be like, what work will have in store for us. Now, every day, we also wonder what changes in healthcare will be in the news. We can be certain that the changing healthcare market will have some impact on our lives. Staying current with all the changes can be a full-time job, especially for people affected by a bleeding disorder.

It's vitally important that you stay on top of key healthcare issues, even if you find them confusing at times. But remember, you don't need to be an expert. You just need to stay informed, create a network of people and experts to talk with and believe that you have a voice and can make a difference in your own healthcare.

To make sure there's no uncertainty about this article, it will focus on the changing face of healthcare in the United States, and on the importance of understanding your current healthcare situation, creating a plan of action, and then taking action to become a more informed healthcare consumer. To put this into a real-life situation, and see how staying informed can have a dramatic impact on your life by creating more certainty, read the entire article, Murky Waters, by Michael Bradley. 


FDA Approves Genentech's HEMLIBRA® (emicizumab-kxwh) for Hemophilia A with Inhibitor

Genentech, a member of the Roche Group, recently announced that the U.S. Food and Drug Administration (FDA) has approved HEMLIBRA® (emicizumab-kxwh) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children with Hemophilia A with factor VIII inhibitors. Nearly one in three people with severe Hemophilia A can develop inhibitors to factor VIII replacement therapies, putting them at greater risk for life-threatening bleeds or repeated bleeds that can cause long-term joint damage. In two of the largest pivotal clinical studies for people with Hemophilia A with inhibitors, Hemlibra® was shown to substantially reduce bleeds in adults and children. 

View full press release.

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