Stepping up advocacy to strengthen haemophilia care
When flights were cancelled throughout 2020 due to the COVID-19 pandemic, people with haemophilia in Nepal could have risked a life-threatening shortage of treatment. Thankfully the Nepal 2 team had started implementing their advocacy plan the previous year as part of the second NNHF-supported project. This unprecedented situation drove the project team to step up their advocacy efforts in order to gain government support for the procurement of haemophilia treatment rather than relying entirely on donations.
Years of advocacy had finally begun to bear fruit and the team were determined to keep up the momentum. Haemophilia was first recognised by the Nepal Government Act as a disability in 2017. A major breakthrough came early in the project when the first of seven provinces agreed to allocate budget to the procurement of haemophilia treatment in late 2019. In 2020, three more provinces followed suit. A key milestone was reached in June when treatment was actually procured with government funding for the first time in the country.
Strategic advocacy and media engagement
For the project team, having a strategic plan in place while teaming up with other organisations and strategically engaging the media have been key to maximising the impact of advocacy efforts.
Nabin Chandra Dhungel, President of the Nepal Haemophilia Society (NHS) and NNHF’s partner on the project, explains: “The inclusion of haemophilia in the legislation has made it easier to fight for our rights. But because the population of persons with bleeding disorders is relatively low compared to other diseases, our voices often remain unheard. Thanks to an advocacy and media engagement workshop with our NNHF partners, we were able to develop a three-year strategic advocacy plan tailored to our needs.”
Implementing the plan became challenging, however, when the lockdown prevented travelling and face-to-face meetings with government officials. Thankfully this did not stop the team from pursuing their goals:
“The urgent priority during the lockdown became concern for the lives of our members due to lack of treatment,” says Nabin. “Working in close collaboration with the Disabled Persons’ Organisations, we used every available channel to raise awareness of the urgency for people with haemophilia: local news media, social networking, visits to ministries for submissions of requests, open letters calling for support. Ultimately the pandemic situation added pressure on our government to provide treatment for haemophilia through central and provincial authorities.”
Securing sustainable impact
The team were finally able to obtain face-to-face meetings with the health authorities, which helped advance their advocacy efforts. In 2020 Nepal allocated budget on a national level to procure treatment for the haemophilia community and developed a National Health Policy that calls for the establishment of laboratories in each of the seven provinces to enable diagnosis outside of the capital Kathmandu.
Decentralising diagnosis and multidisciplinary care in Nepal remain urgent given the mountainous terrain of the Kathmandu valley. The project team continue to work together with the National Federation of the Disabled in Nepal (NFDN) to raise awareness of the challenges for those with reduced mobility. Discussions are ongoing in 2021 with the Ministry of Health on a Memorandum of understanding (MoU) to decentralise diagnosis and care across the country. With support from the NNHF in the framework of the Nepal 2 project, the NHS will continue advocating to ensure continuous budget allocation for treatment in the next years.
