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ADVOCACY

Advocacy

The World Federation of Hemophilia (WFH) plays a leadership role in global advocacy by convening the global bleeding disorders community to promote equitable access to care and to current and emerging treatments. We leverage global and regional advocacy work to enhance the impact of national advocacy initiatives related to policy, care delivery and procurement.

PACT

PACT Logo

The new WFH Path to Access to Care and Treatment (PACT) Program is a 5-year initiative, ending in 2025 designed to improve outreach and diagnosis and increase access to sustainable care for people with inherited bleeding disorders. This will be achieved through training, education, partnerships, in-country initiatives, and evidence-based advocacy. To see the 2-year update on the WFH PACT program, click here.

The need

People with bleeding disorders’ communities face many challenges getting access to proper care in many countries around the world. The gap between observed versus expected people with hemophilia is even greater than it was estimated in the past—with only one third of the expected number of people with hemophilia having been identified globally so far. PACT aims to support the global bleeding disorders community by addressing these needs.

Pact goals

The PACT Program aims to:

  • Identify 20,000 new people with inherited bleeding disorders
  • Improve access to care through the training and education of patient leaders and healthcare providers on outreach, diagnosis, the management of bleeding disorders, and evidence-based advocacy
  • Increase government support to establish or expand existing national bleeding disorders care programs

Program components

The Program will be implemented through three key components.

The PACT Advocacy Academy provides NMO leaders and patient advocates with the necessary knowledge and skills to carry out successful evidence-based advocacy campaigns, including basic concepts and principles of care, access to therapies and procurement, an introduction to health economics, and the design and implementation of advocacy programs.

Yearly virtual training sessions for healthcare professionals focus on outreach, diagnosis, and the management of bleeding disorders. Ongoing training outcomes evaluation will be carried out to provide an assessment of additional needs and to gauge the capacity for progress.

Tailored 4 to 5-year national access plans include personalized training, and on-the-ground support for outreach and advocacy campaigns to increase support from national governments. Collaboration between main stakeholders—the NMO, healthcare professionals and national governments—will be fostered to maximize the success of these programs.

Mentorship from subject-matter experts for NMOs in target countries support the implementation of national access plans. The duration of these mentorships can be from 6-months to 4-years, depending on local needs.

Global and regional training and meetings (starting in 2022) will serve as a forum for sharing best practices and experiences on evidence-based advocacy between community leaders. These collaborative forums will bring together NMO leaders, healthcare professionals and government representatives to promote dialogue and increase engagement among stakeholders.

The WFH is looking for volunteer subject matter experts to serve as WFH PACT Program mentors for NMOs in target countries and to support the implementation of their national access plans. 

Introducing our 2023 Impact Report!

Discover the transformative outcomes of our initiatives, showcasing the positive change we have contributed to in the global bleeding disorders community.

Participating countries

The online training and education and the global and regional meeting components of PACT are available to all countries, while 20 countries have been selected to work on the development and implementation of national access plans. Countries are selected based on the following criteria:

  • Demographic and economic indicators
  • Strength and commitment of local leadership
  • Level of bleeding disorders care in their healthcare system
  • Overall potential for success

The following countries are enrolled in PACT: Argentina, Bangladesh, Bolivia, Brazil, China, Costa Rica, Egypt, India, Indonesia, Kenya, Malaysia, Mexico, Nepal, Nigeria, Pakistan, Palestine, Senegal, Uzbekistan, Vietnam, and Zambia.

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The PACT program is supported by funding from:

VISIONARY PARTNER
LEADERSHIP PARTNERS

PACT ADVOCACY ACADEMY

The pages of an open notebook connect with the back of a laptop

The PACT Advocacy Academy provides NMO leaders, patient advocates, and healthcare professionals (HCPs) with the necessary knowledge and skills to carry out successful evidence-based advocacy campaigns. The eight-month course includes the following topics:

  • Key concepts in bleeding disorders, principles of care, and advocacy
  • Advocacy skills and the design of a campaign
  • Key concepts in therapeutic products, procurement models, and tenders
  • Introduction to health economics and health technology assessment

PACT Advocacy Academy participants are selected through an annual open call for applications. The selection process for the 2025 cohort is open from August 1 to October 1, 2024.

For more information on how to apply, please email PACT@wfh.org.

EVIDENCE-BASED ADVOCACY

Data collected through WFH data collection programs are used to highlight discrepancies in care around the world, and create graphs, charts, infographics, and tools that can be used by NMOs and HCPs to help strengthen advocacy messaging.

Infographics, based on data from the latest Annual Global Survey (AGS) and the World Bleeding Disorders Registry (WBDR), are available for download as an image, a PDF or as slides, and can be used for presentations and advocacy work.

The WFH has developed a user-friendly data visualization system, which includes real-time, customizable queries. This system allows the user to explore and compare recent and historical data to suit all reporting, research, and advocacy needs.

View and download graphs of AGS data developed using our new data collection system.

WFH AGS mini reports are advocacy tools that provide more in-depth perspective and context to AGS data.

Peer-reviewed publications on global data and patient registries relevant to hemophilia and other bleeding disorders are also available.

Stonebraker JS, Bolton-Maggs PHB, Brooker M, Evatt B, Iorio A, Makris M, O’Mahony B, Skinner MW, Coffin D, Pierce GF, Tootoonchian E, The World Federation of Hemophilia Annual Global Survey 1999‐2018. Haemophilia. 2020 Jul;26(4):591-600. doi: 10.1111/hae.14012. Epub 2020 Jun 4.

Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C, Germini F; Data and Demographics Committee of the World Federation of Hemophilia, Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019 Oct 15;171(8):540-546. doi: 10.7326/M19-1208. Epub 2019 Sep 10.

Coffin D, Herr C, O’Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.

Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. on behalf of the Data and Demographics Committee of the World Federation of Hemophilia (2017), Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia. 2017 Jan;23(1):e1-e7. doi: 10.1111/hae.13127. Epub 2016 Dec 8.

GENE THERAPY ROUND TABLE SERIES

The WFH Gene Therapy Round Table (GTRT) series was held from 2018 to 2022. It brought national member organizations (NMOs), patient advocates, healthcare professionals (HCPs), regulators and industry representatives together to share a dialogue on current global developments and the expected challenges related to gene therapy for hemophilia.

Interested in more events about Gene Therapy? The WFH will be hosting a New Technology and Gene Therapy Workshop in November 2024. Contact ntgt@wfh.org to learn more.

Objectives

The objective of this series was to foster a better understanding of the challenges related to the development of gene therapy for people with hemophilia (PWH) around the world. Key challenges and discussions centred around global access to gene therapy, regulatory and financial challenges, the unknowns of gene therapy and long-term follow-up of safety and efficacy. Multi-stakeholder and global perspectives were also considered. The reports from the WFH GTRT have been published.

Gene Therapy Round Table Program Committee

Chair
Glenn Pierce, U.S.A.

Members
A revolving committee of eight health care professionals (HCPs), and people with a bleeding disorder and/or caregiver make up the program committee.

Previous programs are available here:

WFH GTRT PROGRAMS