Advocacy with government
The All-Party Parliamentary Group on Haemophilia and Contaminated Blood is a United Kingdom Parliament group. Nepal does not have that group. The work that resembles it is NHS advocacy with the Ministry of Health and Population and with provincial governments.
In the UK, parliamentarians from different parties have used an all-party group to question ministers about infected blood, treatment and support for the community. That group does not make law by itself, and it does not represent Nepali patients.
In Nepal, NHS takes the same kind of demands to the institutions that can act: the Ministry of Health and Population, provincial health ministries, public hospitals and, where disability rights are concerned, networks such as the National Federation of the Disabled Nepal. The 11 March 2024 meeting with provincial government was one of those days.
What the Society asks for
- Factor assays in reach of each province, not only a one-time camp
- A budget line for safe clotting factor and for prophylaxis, starting with children who are already bleeding into joints
- Training for doctors, nurses, dentists and physiotherapists
- Inclusion of women and girls in testing
- Blood safety rules that are enforced, with records of products and batches
You can help by writing a short account of what care is like in your district, without posting someone else’s medical details online. Send it to nepalhemo@gmail.com with the subject “Advocacy”. The office uses lived experience in meetings. It does not publish your file.
