The Path to Access to Care and Treatment (PACT) Program

The new WFH Path to Access to Care and Treatment (PACT) Program is a 5-year initiative 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.

The need

People in bleeding disorders communities face a number of challenges getting access to proper care in many countries around the world. For example, 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. Also, the COVID-19 pandemic put significant strain on public health systems and increased the need to maintain constructive dialogue with national governments to ensure that bleeding disorders care is sustained and further advanced. PACT aims to support the global bleeding disorders community by addressing all of the above needs, and more.

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 virtual Academy for Bleeding Disorders Advocacy (ABDA) to provide NMOs 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, focusing 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 for selected countries based on their needs. These plans will 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 in order to maximize the success of these programs.

The national access plans will be developed based on the framework of the WFH comprehensive development model used by the WFH to inform all of its national healthcare development programs.

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

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

Objective

The main objective of mentorship is to provide guidance and expertise to WFH NMOs in one or more of the thematic or organizational capacity areas listed below to maximize the impact of their PACT national access plans.

Duration

The duration of mentorship will range from 6 months to 4 years and will be defined on a case-by-case basis, depending on local needs and the mentor’s availability.

Areas of expertise

The WFH is seeking mentors with extensive experience and expertise in one or more of the following areas:

National bleeding disorders progams an care delivery

  • Developing a national bleeding disorders (or hemophilia) program
  • Establishing national hemophilia or bleeding disorders councils or committees
  • Developing national treatment guidelines
  • Establishing hemophilia treatment centres

Advocacy and government support

  • Planning and implementing advocacy campaigns
  • Collecting and using data for advocacy
  • Understanding health economics and health technology assessments
  • Increasing access to safe therapies and procurement models
  • Managing relations with stakeholders

NMO organizational capacities and leadership

  • Supporting governance and leadership development
  • Enhancing NMO organizational development, including regional representation or chapters
  • Developing strategic plans
  • Writing a project proposal and managing project cycle
  • Developing communications plans
  • Engaging and retaining volunteers
  • Implementing fundraising and resource mobilization campaigns

NMO outreach and educational programs and services

  • Designing and implementing outreach programs to identify new people with bleeding disorders
  • Using digital tools in outreach and/or educational programs
  • Designing and implementing thematic projects related to any of the following:
    • Awareness and education on VWD
    • Youth leadership and engagement
    • Awareness and education on issues related to women and girls with inherited bleeding disorders
  • Designing and implementing other patient or healthcare education and capacity-building programs
  • Developing patient registries and other data collection programs

How mentorship works

All individuals who apply to join the Program as a mentor will receive a letter of acknowledgement and will be added to a database of prospective mentors. A matching process will follow, taking into consideration the mentor’s expertise and the needs of NMOs currently implementing national projects as part of the PACT Program. Once a suitable match is established, the mentor will be contacted to confirm their selection.

Next, an introductory meeting between the mentor and the NMO will be facilitated by WFH staff to discuss the objectives and scope of the mentorship, and establish both parties’ willingness to work together. Once a mentorship starts, the WFH will ask both the mentor and the NMO to provide periodic progress reports.

Some examples of the type of support a mentor could provide to the NMO could be the following:

  • Provide guidance and advice on specific areas as defined in the agreed upon Scope of Mentorship
  • Review and provide feedback on various documents, policies, and guidelines (either national or internal for the NMO)
  • Present at a meeting or an event as a subject-matter expert

How to apply to become a WFH PACT Program mentor

Interested individuals with demonstrated experience and expertise in one of the areas listed above are invited to send their CV and the completed Mentor Expression of Interest Form to [email protected].

Global and regional training and meetings (starting in 2022) to 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.

Participating countries in 2021

The online training and education, and the global and regional meeting components of PACT are available to all countries, while 20 countries will be selected to work on the development and implementation of national access plans. Ten of the 20 countries have been selected for 2021, with the balance of 10 countries to be enrolled in 2022. 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

Countries enrolled in PACT in 2021

Nigeria
Egypt
Bangladesh

Pakistan
Palestine
Malaysia

Bolivia
Nicaragua

India
Nepal

The PACT Program is supported by funding from:

Leadership partners

Collaborating partners

 
 

 

FACT SHEET

CALL FOR EXPRESSION OF INTEREST FOR Mentors