GLHF Update

 

 

GLHF's Wisconsin Legislative Day 

Sharing Our Stories with Lawmakers

Last month, GLHF headed to Madison for our Wisconsin Legislative Day. Our group was made up of GLHF staff, HTC (Hemophilia Treatment Center) staff  and people and families living with a bleeding disorder. We educated Senators and Representatives about what it's like living with a bleeding disorder and the issues that impact the bleeding disorders community right here in Wisconsin.

This important day came at a time when health care policy is rapidly changing. Now, more than ever, it's critical that lawmakers hear from people whose every day lives are directly impacted by changes in health care legislation. 

"I really think it's important that I stay involved because this is such a critical issue," said Monserrate, whose child has hemophilia. "This is a great opportunity to meet with legislators and talk about hemophilia. Most people don't know anything about it or the cost of treating it." 

The group met with 10 Senators and 12 Representatives. The meetings focused on two issues. First, maintaining consumer protections such as the elimination of pre-existing condition exclusions, limits on out-of-pocket expenses and the elimination of lifetime and annual limits. Second, continued funding of the Wisconsin Chronic Disease Program, under which Wisconsin provides reimbursement for the clotting factor concentrates that are used to treat bleeding episodes. Continued support of this program is critical to the bleeding disorders community.

"I've had many problems over the course of my life due to my bleeding disorder," said Ron, who has hemophilia. "There's always hope for new research and new medication. But, in the meantime, it's important for lawmakers to understand how essential it is for us to have adequate health care and to receive funding for health care programs that protect people like me. I like to stay involved for myself and future generations."

GLHF thanks the Senators, Representatives and constituents for their time and consideration!

Unfortunately, our work is not over! Recently the House of Representatives voted to pass the American Health Care Act (AHCA), a bill that would replace parts of the ACA (Affordable Care Act/Obamacare), significantly impacting health care coverage for people living with a bleeding disorder. Although the bill passed the House, it has a long way to go before becoming a law, including passing the Senate. That is why, now more than ever, your voice needs to be heard! Please continue calling your Representatives and Senators to tell them your story. Explain to them why this new bill would negatively impact the coverage you currently receive under the ACA. Find your legislator now!

Also, consider sharing your story with GLHF about why your current health care benefits are important to you. You can send your story to Danielle Leitner Baxter at Email: dbaxter@glhf.org.

 

 

Is Your Child Ready to Embrace Camp? Camp Klotty Pine Registration is Open!


Registration Deadline: June 30

New this year: Leave the endless piles of application forms behind as we introduce an online registration system through CampDoc. Follow the step-by-step instructions and you will be registered for camp in no time! Then, next year, you will be able to access your registration and simply make updates.


Volunteer Counselors Needed! If you love summer camp and have experience working with children, please consider applying! Camp is August 5-10. Call 414.937.6782 or Email: kkoppen@glhf.org to request an application!


Visit our website for information about camp or to register.


When GLHF started our camp program, we wanted an experience that was unique, local and that coincided with our mission to educate, support and advocate for the Wisconsin bleeding disorders community. We have been pleased and grateful to see how highly regarded and popular our camp has become in Wisconsin.

In 2016, Camp Klotty Pine had 37 children in attendance, up from 20 in 2013, its inaugural year, and far surpassing our expectations.

Each year, campers arrive with different feelings about the week ahead, but all campers leave feeling like they are a part of something. Children find friends and know that they can completely be themselves - because they share some of the same life experiences.

Campers leave with stories about swimming, hiking, fishing, songs they have learned and gaga. "We are very proud of the camp experience we have created for children with bleeding disorders," said Karin Koppen, Director of Camp Klotty Pine. "Most importantly, we have been successful in providing life skills such as self-infusion through education and training."

New This Year: Leader In Training Program

Camp Klotty Pine is starting the Leader In Training (LIT) program for teens who have outgrown their role as a camper and have a desire to move into future camp leadership positions. The three year program is open to all former campers ages 15-17. "We are really excited to kick off the LIT program at the Wisconsin Bleeding Disorders Conference in June," said Karin. "LITs will learn about positive behavior management, interpersonal relationships and how to maintain a fun, safe environment for campers." The program focuses on skill-building, leadership-development and service-learning to build competent counselors and ambitious leaders for the future. 

Building Our Team

Camp Klotty Pine is also adding additional counseling staff this summer to help make camp the best experience possible for campers. Highly trained and skilled staff will help us enhance programming, as well as each camper's individual experience.


Camp Klotty Pine is a week-long summer camp program for children with bleeding disorders. Children receive the education, training and life skills necessary to manage their disorder independently. They develop confidence and independence while building life-long friendships and memories as they participate in traditional camp activities.

Scholarships Can Help You Reach Your Goals! Apply Today!


Application Deadline: June 1


GLHF strives to enhance the lives of people living with a bleeding disorder. One of the ways we do this is by providing scholarship opportunities to prepare them to become self-sufficient and productive members of the work force. We offer scholarships for all stages of life!

Education Scholarship

The Education Scholarship is designed to assist students with a bleeding disorder (or parents, spouses or siblings, if additional funding is available) with tuition assistance as they pursue their education at an accredited, not-for-profit college, university or vocational/technical school. Students must reside in the state of Wisconsin or receive care at one of the Wisconsin Hemophilia Treatment Centers.

Award: $250 - $3,000 per student

Deadline: June 1

The Jacob N. Shanberge, M.D., Memorial Scholarship

The Jacob N. Shanberge, M.D., Memorial Scholarship will be awarded annually to a student with a bleeding disorder who is pursuing a career path in science or medicine.

Award: $4,000

Deadline: June 1

Career Development Scholarship

The Career Development Scholarship provides funding assistance for tuition and enrollment fees relevant to continuing education in a non-traditional or non-degree format. This scholarship is intended to promote career development for those living with bleeding disorders. Parents and spouses are also eligible for this scholarship. Applicants must be a Wisconsin resident or receive care at a Wisconsin Hemophilia Treatment Center.

Award: Up to $500 per class

Deadline: Open throughout the year.

College Bound Scholarship

The College Bound Scholarship offers youth ages 11-17 an opportunity to attend college preparatory courses. Selected programs or classes should prepare children for the college experience and assist with career direction. Examples of eligible programs include: College for Kids or tutoring for ACT/SAT preparation.

Award: Amount varies

Deadline: Open through the year.


Visit the National Hemophilia Foundation site for a full list of scholarships!

A New and More Precise Test for VWD

GLHF's Region V-West partner, the BloodCenter of Wisconsin (BCW), recently announced the launch of a new and more sensitive test for von Willebrand disease (VWD), a genetic disorder characterized by either a qualitative or quantitative flaw in von Willebrand factor (VWF). Milwaukee-based BCW is a not-for-profit organization that specializes in blood services; organ, tissue and marrow donation; diagnostic testing; medical services; and research.

Depending on the specific type, individuals with VWD can experience bleeding-related symptoms that range from mild to severe. Despite being the most common bleeding disorder, VWD is historically a more challenging condition to screen for, often necessitating a battery of tests to pinpoint a diagnosis.

The "VWF GPIbM Activity" test is designed to uncover qualitative VWF defects to reduce variability and provide "more precise, reliable and sensitive test results," according to a BCW press release. The availability of the test could be a boon to clinicians, particularly hematologists encountering potential cases of VWD.

"As a physician caring for individuals with inherited bleeding disorders, this development is an exciting advancement in von Willebrand disease diagnosis," said Jonathan Roberts, M.D., Associate Medical Director, Bleeding & Clotting Disorders Institute, Peoria, IL. "This assay will reduce some of the diagnostic challenges in caring for individuals with von Willebrand disease." 

Source: BloodCenter of Wisconsin press release, April 4, 2017

INDUSTRY NEWS

Novo Nordisk's HemaGo™ Mobile Application Helps People with Hemophilia Track Treatment

Novo Nordisk recently announced the launch of a new web-based portal, HemaGo™ XChange. Data entered by the patient into the HemaGo™ XChange with the individual's hemophilia treatment network. In addition, through a partnership between Novo Nordisk and the American Thrombosis and Hematosis Network (ATHN), patients may also choose to have these data entered into ATHN's national database of bleeding disorder treatment information. This sharing option is initiated by the patient with a request to their Hemophilia Treatment Center (HTC).

Patients using HemaGo™ can now:

  • Provide information to their healthcare team, including access to treatment and bleed data, in real time through the HemaGo™ XChange web portal.
  • Enable healthcare providers, pharmacies and insurers access to treatment and bleed data in real time through the HemaGo™ XChange web portal.
  • Choose to email data directly from the app or website at any time.
  • Opt-in through their HTC to have their data integrated into ATHN's national database of bleeding disorder treatment information. ATHN will use and share these data with HTCs to foster its mission of advancing knowledge and transforming care for the bleeding and clotting disorders community.

Source: Novo Nordisk. View Novo Nordisk's full press release.

 

Article published with permission from Novo Nordisk.

Thank you to this month's underwriters:

A promotional message from Bayer: 

Funds received from underwriting help support GLHF programs and services for the Wisconsin bleeding disorders community.

Great Lakes Hemophilia Foundation does not endorse any product, provider or pharmacy, as we are not medical professionals. We respect that all decisions regarding treatment are between you and your doctor.

Visit our Calendar to view upcoming programs and events.

For newsletter Archives, click here.

To visit GLHF's In The News section, click here.