WFH NETWORK

Action plan developed at the WFH 2019 Africa summit to implement the 2017 declaration

The World Federation of Hemophilia (WFH) held its 3rd Africa Summit 2019 from September 3 to 4 in Johannesburg, South Africa, that brought together key stakeholders in the African community. This included patients, physicians, government officials and WFH national member organizations. As an outcome, an action plan was formulated by these stakeholders to further advance the achievement of the four priority areas of the WFH Africa Summit 2017 declaration. The status of Africa hemophilia and other bleeding disorders care informed the baseline of the discussions and guided the recommendations.

2017 Declaration Statement 1: Recognize hemophilia and other inherited bleeding disorders in the governments’ national health care delivery policies and programs to improve care and management and ensure that healthcare providers have the skills and capacity to deliver quality care and treatment.

The current status: In most countries in Africa, hemophilia and other bleeding disorders are not recognized by the government or health system. Bleeding disorders is not recognized as a priority health area.

In order to improve the current status, the following action was agreed upon:

Action 1: Ensure full integration of Hemophilia and other Bleeding Disorders as part of Health System Priorities

This is to be achieved through the following strategies;

  1. Adopt a multi-partnership approach for advocacy involving people with bleeding disorders (PWBDs), international organizations such as the WFH, WHO, ISTH among others, health care providers, governments, donors and pharmaceutical companies
  2. Link hemophilia with other priority health programs such as non-communicable diseases, maternal child health, blood transfusion, and sickle cell disease, among others. This includes incorporating hemophilia into health care strategic plans
  3. Improve capacity building initiatives through integration of hemophilia and other bleeding disorders into health professionals training, developing and adopting of national treatment guidelines; and improving the health care infrastructure
  4. Enhance data collection in countries by establishing and maintaining patient registries, conducting research, and reporting on outcome measures and treatment impact

2017 Declaration Statement 2: Implement outreach programs, responding to the individual country needs, to identify undiagnosed persons with hemophilia and other inherited bleeding disorders

The current status: The overall identification rate of People with Hemophilia (PWH) and inherited bleeding disorders in Africa in the past several years has been low. According to the WFH AGS 2017, only 11% of PWH in the Africa region have been identified.

In order to improve the current status, the following action was agreed upon:

Action 2: Implement outreach and patient identification initiatives

This is to be achieved through the following strategies;

  1. Conduct a situational analysis (state of affairs) to determine needs and develop an action (SMART) plan to address priorities
  2. Improve awareness by documenting patient stories, health outcomes and impact, and using a variety of communication media to reach patients, health care providers, governments and the general population
  3. Integrate and link outreach and identification activities with other government programs
  4. Strengthen patient organizations through training and networking
  5. Adopt innovative approaches to identify patients such as mobile clinic outreach programs

2017 Declaration Statement 3: Endorse the importance of developing a harmonized approach to lab diagnosis for patients with hemophilia and other inherited bleeding disorders and undertake to work collaboratively to develop guidelines for accurate lab diagnosis in Africa including the availability of equipment and materials to facilitate the diagnosis.

The current Status: Diagnosis remains one of the biggest challenges to care in Africa. Access to diagnosis is limited in cities and in some cases equipment, reagents and supplies for diagnosis is lacking.

In order to improve the current status, the following action was agreed upon:

Action 3: Improve diagnosis

This is to be achieved through the following strategies;

  1. Improve laboratory diagnostic capacity (skills and knowledge) in collaboration with governments and partners
  2. Lobby for the development of national laboratory diagnostic guidelines that incorporate the different levels of the health pyramid
  3. Strengthen internal and external quality controls
  4. Advocate for improvement of hemostasis lab specifically equipment procurement and maintenance including ensuring continuous availability of reagents and supplies

2017 Declaration Statement 4: Treat people with hemophilia and other inherited bleeding disorders; recognizing that the lack of safe treatment is not an option and that improved access to treatment is an imperative to save lives and improve the quality of life of the patients

The current status: Access to treatment is still a challenge in many countries. Few countries in Africa procure the needed treatment factor. Over 90% of countries in Africa rely on Humanitarian Aid donations which is not sustainable.

In order to improve the current status, the following action was agreed upon:

Action 4: Improve Access to treatment and care

This is to be achieved through the following strategies;

  1. Advocate with government to include factor concentrates for treatment as part of the essential drug list, establishing and maintaining a patient registry, including use of data for decision making and for lobbying for the allocation of resources for treatment and care of bleeding disorders
  2. Strengthen collaboration within countries through sharing of knowledge and experiences including leveraging opportunities to purchase treatment factors as regional blocks at lower cost
  3. Enhance relationships with different partners and stakeholders to support the African bleeding disorders community

To read about what attendees think of the WFH Africa Summit 2019 please click here. To find out more about the WFH Africa Summit 2017, please click here.