Call for affordable treatment on World Haemophilia Day

Karachi

Keeping in line with the World Federation of Haemophilia’s (WFH) objectives on the World Haemophilia Day, annually observed on April 17, the Haemophilia Welfare Society Karachi (HWSK) on Sunday organised a programme to highlight the sufferings of Pakistan’s ‘bleeding disorder community’, mainly owed to a lack of access to treatment and care.

The need to bring to fore the enormous discrepancy in the level of care available to patients with a bleeding disorder around the world, were discussed at the event.

While some were diagnosed very young, and were able to access medical care throughout their life, most did not. Treatment for those with a bleeding disorder existed but without proper care several patients suffered debilitating pain, permanent joint damage, and even death.  Ensuring that someone with a bleeding disorder was diagnosed early and was cared for properly was termed a shared responsibility of the community at large by the programme’s organisers.

The WFH has been working toward the shared vision of Treatment for All for more than 50 years but the support of the entire community was much needed, an official stated.

Created in 1996, the World Federation of Haemophilia (WFH) channelled donations for life-saving treatment products globally for people suffering from bleeding disorders.

One of the WFH’s goals over the next three years was stated to make the products easily available in developing countries, which would make humanitarian aid more predictable, and care, more sustainable.  Speaking of the programme’s recent expansion, the WFH official said that it would also make it possible for people with a bleeding disorder in the developing world to have access to treatment in emergency situations, acute bleeds, corrective surgeries, and prophylaxis for young children.

This programme was said to be a contribution of the WFH’s towards its objective ‘Treatment for All.’ However, the participants of the programme agreed that more was still to be done.

For this segment of population only a handful had been diagnosed and were getting some form of treatment, if not the best, while thousands did not even have the means to get themselves diagnosed. The main reasons were said to be a lack of health facilities available to them since they were living in remote areas and it was difficult for them to travel to a city which had some form of treatment facility available for them.

The treatment centres were few and far between, while there was an urgent need for providing the patients with the best possible treatmen.

  Co-founder of the HWSK, Fakhr-e-Alam Zaidi said that where the state’s apathy towards the community had greatly exacerbated their difficulties in accessing treatment, it had also subsequently made it difficult for them to integrate in the society as the people at large did not have a sense of acceptance towards them.