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Advocacy Avenue

 

The 2018-19 PA Budget has been passed and the Hemophilia Program Line Item is safe. Thanks to all of our community members for their great advocacy efforts!

On Tuesday, April 17, 2018, members of the Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation gathered at the Capital Building in Harrisburg for the annual PA Advocacy Day. This also was World Hemophilia Day. There were over 70 meetings with legislators to discuss the importance of maintaining the Hemophilia Program Line Item, which helps support the seven Hemophilia Treatment Centers in the Commonwealth. Our community is also backing House Bill 2113 introduced by Representative Donna Oberlander (R-Allegheny). This bill would amend Pennsylvania’s Unfair Insurance Practices Act to prohibit commercial insurers from making coverage changes during the policy year that deny or increase the cost of a treatment, service or prescription that a patient is already receiving.

 

The Chapters are focused on building strong relationships with the governor’s office, Department of Health and legislators in the state house and senate. It is extremely important to continue increasing awareness for our community.

 

Recently, two resolutions were passed by our elected officials:

  • PA House Resolution 710 designates March, 2018 as Bleeding Disorders Awareness Month in the Commonwealth.
  • PA House Resolution 728 designates April 17, 2018 as World Hemophilia Day.

Both Chapters have developed important partnerships with the National Hemophilia Foundation and the Hemophilia Federation of America. A lobbyist firm also has been hired so that we can have a presence in Harrisburg throughout the year. In addition, it helps us stay informed and allows for quick responses. EPC will continue to update the community on current issues and potential challenges. (see images below in slideshow)

Tuesday, April 17, 2018, was officially recognized as “World Hemophilia Day” in Pennsylvania as resolved by the Commonwealth’s House of Representatives. In recognition, Philadelphia landmarks were lit red that included Boat House Row, the FMC Tower and the Cira Center. Additionally, a scrolling message appeared on the top of the PECO Building. The Capital Building in Harrisburg also was lit red.

 

Our young community members did an outstanding job creating awareness for the bleeding disorders community.

 

On World Hemophilia Day, the first grade class at Jenkintown Elementary came together to wear red in support of their classmate, Tommy DiCamillo, and to spread awareness. With the amazing efforts of the 1st grade teachers and staff at Jenkintown Elementary, the classmates collectively raised donations from friends and family that were matched dollar for dollar by their wonderful teacher. Together they raised $77 to be donated to EPC. We are so grateful for their thoughtfulness and hard work. A huge thank you to the first grade class, teachers and staff at Jenkintown Elementary!

 

Callie Padilla is a fifth grader at Monsignor McHugh School (MMS) in Cresco, Pa. She has von Willebrands disease and is treated at St. Christopher’s Hospital for Children in Philadelphia.

 

Callie’s classmates, teachers and administrative staff are aware of her bleeding disorder and support her. On Friday, May 11, 2018, her school held a “red shirt” dress down day to raise awareness. The school took pictures of all the students and to show their support, they held signs saying MMS Loves Callie!

 

 

 

 

PA House Resolution 710 designates March, 2018 as Bleeding Disorders Awareness Month in the Commonwealth.

 

PA House Resolution 728 designates April 17, 2018 as World Hemophilia Day. 

 

The Chapter was also formally recognized by NHF for their advocacy efforts.

 

2018 PA Advocacy Day and World Hemophilia Day

 

     

 

Advocacy Update

By Curt Krouse, Executive Director

 

The Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation have been very busy in Harrisburg this year meeting with members of the governor’s office and legislators to discuss the Hemophilia Program Line Item and the need to keep it separate and level funded. We were told from the start that the Governor would once again consolidate it with Cystic Fibrosis, Cooley’s Anemia and Sickle Cell. Because we had meetings so early in the year, our hope is that the line item will be immediately separated out in the House and Senate versions of the budget. This will be our main issue when we have our annual Advocacy Day on Tuesday, April 17. Both Chapters co-wrote an article on the Hemophilia Program Line Item that appeared in HeathNewsDigest.com, which you can read below.


To date, meetings have included:

  • Anne Baloga, Governor’s Budget Office
  • Mike Hanna, Jr., Governor’s Legislative Office
  • Danielle Guyer, Director of Budgetary Affairs, House Majority Caucus (Rep. Mike Turzai; R-Allegheny / Rep. Dave Reed; R-Indiana)
  • Caleb Sislak, Budget Analyst, House Democratic Appropriations Committee (Rep. Joseph Markosek; D-Allegheny)
  • Ann Bertolino, Budget Analyst, House Republican Appropriations Committee (Rep. Stan Saylor; R-York)
  • Scott Sikorski, Legislative Director, Senate Republican Leader’s Office (Sen. Jake Corman; R-Centre)
  • Lisa Fleming, Assistant Executive Director, Senate Democratic Appropriations Committee (Sen. Vincent Hughes; D-Philadelphia)
  • Tom Diehl, Budget Analyst, Senate Republican Appropriations Committee (Sen. Patrick Browne; R-Lehigh)
  • Steve Bruder, Policy Director, Senate Democratic Leader’s Office (Sen. Jay Costa; D-Allegheny)
  • Gabe Spece, Executive Director, House Democratic Caucus (Rep. Dan Frankel; D-Allegheny)
  • John McDermott, Legislative Assistant (Rep. Mike O’Brien; D-Philadelphia)
  • Sarah Kurish, Legislative Director (Sen. Larry Farnese; D-Philadelphia)


In addition, both Chapters will be supporting House Bill 2113 introduced by Representative Donna Oberlander (R-Allegheny). This bill would amend Pennsylvania’s Unfair Insurance Practices Act to prohibit commercial insurers from making coverage changes during the policy year that deny or increase the cost of a treatment, service or prescription that a patient is already receiving. We have joined a large coalition for this issue, which also will be part of our PA Advocacy Day.


If you have any questions regarding our advocacy efforts, please contact
Curt Krouse at (484) 445-4282 or curtk@hemophiliasupport.org.

 

PA Must Maintain Funding for Hemophilia Treatment Centers

By: Alison R. Yazer, Executive Director of the Western Pennsylvania Chapter of the National Hemophilia Foundation and Curt Krouse, Executive Director of the Eastern Pennsylvania Chapter of the National Hemophilia Foundation.

Originally published in HealthNewsDigest.com February 19, 2018

 

Unless you or someone you know has a bleeding disorder, you might not realize just how challenging it can be to receive appropriate care. Hemophilia patients must have access to lifelong treatments and medications necessary to control the condition. Such treatments can easily cost $300,000 per year and can surpass $1 million if complications occur.


It’s important to note that more than 3,000 people reside in Pennsylvania with bleeding disorders, such as hemophilia, von Willebrand disease and other factor deficiencies. In 1974, Pennsylvania became one of the first states in the U.S. to establish state support for our seven Hemophilia Treatment Centers (HTC) – which are regularly recognized on a national level for their excellence – to provide comprehensive care.


The members of Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation rely on critical funding from the Commonwealth to provide treatment and support. Every dollar of our funding goes directly to patient care, ensuring patients receive appropriate treatments and medications in order to live their life to the fullest. If these patients could not receive this care, it’s estimated that Pennsylvania would incur approximately five times more costs due to emergency care or care via Medicaid, and lost tax revenue from patients too sick to work.


According to studies conducted by the Centers for Disease Control and Prevention (CDC), patients who receive care at a HTC reduce their risk of mortality and medical complications by 40 percent. Moreover, the overall costs of care are reduced. Patients are able to enjoy a greater quality of life, remain gainfully employed and contribute to the community in ways they could not if they lacked the necessary care for their bleeding disorders.


Simply put, the Hemophilia Program Line Item saves Pennsylvania lives and saves Pennsylvania money.

We understand our legislators will again be tasked with balancing Pennsylvania’s budget which may require making cuts; however, funding for the Hemophilia Program must be maintained as its own line item. This program has a 40-year track record of success that has proven to be a smart investment for the Commonwealth. We urge our legislators to maintain funding for the hemophilia line item at its current level to ensure we continue to provide support and medical care for the more than 3,000 Pennsylvanians whose lives depend on it!

Advocacy Update

By Curt Krouse, Executive Director

 

The Eastern and Western Pennsylvania Chapters of the National Hemophilia Foundation held their annual Advocacy Retreat at the Hershey Lodge in Hershey, PA on Tuesday, October 24. In attendance were staff and board members from each chapter, representatives from four HTCs, patients, and advocacy leaders from NHF and HFA.


The purpose of the retreat was to evaluate areas of improvement and our accomplishments in 2017. We also looked at various issues that we may want to advocate for in 2018, which will be included in our agenda for PA Advocacy Day in the Spring.


If anyone in the community wants to bring a concern to our attention, please contact Curt Krouse at the EPC office. Once our plan has been developed, we will share it through The Winning Spirit, emails and social media. We look forward to your involvement, and to another successful year of advocacy.

 

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