Provincial advocacy meeting

Families, clinicians, and volunteers met provincial leaders on 11 March 2024 to ask for sustained investment — not a single awareness camp.

Who was in the room

On 11 March 2024 Nepal Hemophilia Society convened provincial government representatives, member families, and clinicians in Kathmandu. The meeting was not a celebration; it was a structured ask backed by lived experience.

Parents described bus fares, lost wages, and children who missed school because joints were damaged before anyone named haemophilia. Clinicians explained the difference between cryoprecipitate and virus-inactivated concentrate when a centre has both.

The three-part ask

Diagnosis: factor VIII and IX assays reachable in each province, not only in the capital. Treatment: safe clotting products recorded by batch for every patient. Continuity: clinics and physiotherapy that continue after World Hemophilia Day.

Provincial budgets were challenged directly. If a province funds posters but not laboratory reagents, families still return to Kathmandu for every test.

Supply and safety on the agenda

Members raised what product was on shelf that month, whether humanitarian aid filled a gap, and what happens when a batch changes mid-treatment. Blood safety is not an abstract lesson from abroad — it is a procurement decision in each province.

The Society linked the meeting to wider international inquiry reports as context for why records and screened donations matter in Nepal today.

What happens between meetings

Advocacy continues through letters, registration data, and district stories sent to nepalhemo@gmail.com with the subject “Provincial advocacy”.

If you could not travel to Kathmandu, your paragraph about care in your district carries the same weight when the office presents to officials. Membership gives NHS authority to speak with numbers and names — always with consent.

This page is general information from Nepal Hemophilia Society. It is not a diagnosis or a treatment plan. A bleed, a head injury, or bleeding after an accident needs urgent hospital care. Ask your treatment centre before you change any treatment.