The Thalassaemia International Federation and the UK Thalassaemia Society have jointly organised a delegation visit in Nepal, from 4 to 6 August 2018.
The visit programme included:
- Fact finding meeting with Nepal Thalassaemia Society
- Meeting with Treating Physcians & Hospital Administration
- Capacity Building Workshop for Patients/Parents and information on basic treatment at the Amrit Bhog Party Palace
- Interaction program with doctors (relating with thalassaemia directly or indirectly)
- Meeting with Ministry of Health & Population to discuss epidemiology, treatment facilitation, awareness, prevention
- Debriefing meeting of Delegation – Discussion of Report – Next Steps
- Dr Michael Angastiniotis, Medical Advisor, Thalassaemia International Federation
- Dr Sara Trompeter, Consultant Haematologist and Paediatric Haematologist, Joint Red Cell Unit, University College London NHS Foundation Trust, Haematology Department, Cancer Services
- Mr. Gabriel Theophanous, UKTS President, TIF Board Member
- Mrs. Romaine Geeta Maharaj, UKTS – Operations Manager, TIF Board Member
- Mrs. Wendy Pinker – Founding member, Nepal Thalassaemia Society
- Mr. Durga Pathak, President, Nepal Thalassaemia Society
TIF is happy to announce that there was positive reaction by the local stakeholders in Nepal, who expressed willingness to proceed with concrete actions to improve the care of thalassaemia for children and adult thalassaemia patients. These actions include:
- The provision of free space in the state hospital for the treatment of children and adults
- The provision of free blood to patients, to balance the current out-of-pocket expenses
- Placing chelation drugs on the Nepalese list of Essential Drugs, which means that these drugs will be offered free of charge for patients. Chelation agents for haemoglobinopathies are already in the WHO Model List of Essential Medicines. WHO defines essential drugs as those that satisfy the priority health care needs of the population. They are selected with due regard to public health relevance, evidence on efficacy and safety, and comparative cost-effectiveness.
TIF is pleased with the public sensitization and formal recognition of the difficulties and challenges that Nepal has, for decades now, been facing with regard to the above-mentioned aspects of thalassaemia treatment, and the need for improvement in the treatment and care.
There were also longer term outcomes that derived from the visit, which TIF is particularly happy and hopeful about:
- the agreement to conduct epidemiological studies in Nepal by the National Public Health Laboratory
- the creation of a national thalassaemia registry. Registries are usually disease-specific and serve to store patients’ personal information and their medical history. They thus allow the government, officials and researchers to estimate the disease-burden associated with thalassaemia and answer questions about the number of patients with thalassaemia. The development of a thalassaemia-specific national registry will be a very important development for Nepal and will help structure a quality care system for patients with thalassaemia, provide accurate advice to patients and improve their life expectancy accurate advice to patients, and to improve care pathways, which can lead to improved care and life expectancy, even in the absence of a cure.
TIF considers this visit a success and a step forward in its mission to ensure quality of care, life and equity of access for all patients in all affected countries. We remain vigilant for the implementation of these measures the soonest possible.