MAURITIUS: Haemophilia Association of Mauritius (HAM) – improving the quality of life of persons living with Haemophilia and other bleeding disorders in Mauritius

The Haemophilia Association of Mauritius (HAM) is a Non-Governmental Organisation working on a national scale to improve and sustain treatment of people with haemophilia and other inherited bleeding disorders in Mauritius. Established in 2008 by a handful of desperate parents and patients who wanted to see a change in the medical care being given to people living with Haemophilia in Mauritius

The Association has grown from a small structure of 23 members to a colossal Association of over 120 members. On the international scale, HAM today forms part of the World Federation of Haemophilia (WFH) as an Associate National Member Organisation.The Haemophilia Association of Mauritius is dedicated to improving the quality of life of persons living with haemophilia and other inherited bleeding disorders in Mauritius.

Access to treatment is perhaps the biggest challenge facing the majority of people with haemophilia throughout the world. Only 25 per cent of those living with haemophilia are receiving adequate care.

In Mauritius today, HAM has made great progress with regards to treatment. Its strong ties and excellent collaboration with the Ministry of Health of Quality of Life ensures that all persons suffering from Haemophilia and other bleeding disorders receives free Factor Concentrate whether it be in light of their preventative or on demand treatment.

This meaningful partnership ensures that Factor Concentrate is now available at all Regional Hospitals and a system of stock control of medication has been set up at the Central Stores of the Ministry of Health and Quality of Life which ensures timely availability of medication to all HAM’s patients.

HAM’s objectives include:

• Identifying obligate and potential carriers
• Supporting mothers of Haemophilia patients
• Empowering girls suffering from haemophilia

The activities of HAM include:

• Advocacy with Government for medication
• Advocacy for adequate treatment
• Awareness
• Outreach visit to identify patients
• Education of patients and parents
• Capacity Building of Multifunctional Team (Health Care Professionals)
• Counselling

BUDGET for ACTIVITIES

Monitoring

• No of patients increasing
• Medication IU/capita – 1st in Africa
• Quality of life improved – mothers working and living a ‘normal’ life

Evaluation

• Scientific registry
• Annual Global survey
• Feedback for patients and mothers
• Annual Global report

The key challenges of HAM include: (1) Financial issues and not enough funds for projects (2) Donors not giving money towards the cause

The challenges have been overcome through:

• Networking (local, regional and international)
• Strong Values (integrity, honesty, transparency and good governance)
• Continuous upgrading of skills and competencies of health professionals