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Delegation Visit to Pakistan – 5-6 April 2016

In 2016, TIF sent a delegation to visit Islamabad between the 5th and the 6th of April. The visit followed an official invitation for participation in a series of workshops on blood safety and development of thalassaemia control policy, organised by the Blood Safety Programme of Pakistan, in collaboration with the National Health Authorities of the country. The suggestion was to present the Ministry National Policy on Thalassaemia, and this was finally achieved. The TIF contingent, comprised of Dr Michael Angastiniotis (TIF medical advisor) and Mr Stavros Melides (former TIF board member and patient advocate), had the opportunity to discuss with provincial stakeholders the issue of prevention and matters of patient care, which are of great importance for the provinces. In addition, the need to promote the quality control of treatment centres, the reduction of out-of-pocket expenses, and the formation of private/public partnerships between thalassaemia Non-Governmental Organizations (NGOs) and national health authorities for the benefit of patients with thalassaemia, were also extensively discussed.

Finally, the TIF contingent met with the Director General of the Bait-ul-Mal Foundation with whom there were discussions on the ways through which thalassaemia programmes may be supported by the Foundation. Consequent to this fruitful meeting, TIF developed and forwarded a project proposal for joint activities in Pakistan, to which TIF anticipates receipt of an official response.

The Pakistan Bait-ul-Mal (PBM) is an autonomous body set up through a 1991 Act. PBM, is a fund that significantly contributes toward poverty alleviation through its various poorest-of-the-poor-focused services and providing assistance to the destitute, widows, orphans, invalids, the infirm, and other needy persons, as per eligible criteria approved by the Bait-ul-Mal board. The Managing Director, barrister Abid Waheed Sheikh, was sensitized to the plight of thalassaemia patients through the experience of patients who were having difficulties in the provision of treatment and the effect that this chronic disease was having on their families. His kind response has benefited around 1,500 poor thalassaemia patients who are now supported by PBM for both blood supply and chelation therapy. In addition, PBM built the impressive Pakistan Thalassaemia Centre in Islamabad, which was visited be the TIF delegation.

Pakistan is a high frequency and high-prevalence country, with 22,000 known patients, up to 50,000 or more possible patients, and up to 6,000 new cases added each year. Thalassemia constitutes a major challenge to the national healthcare system of Pakistan with its consequent medico-socio-economic repercussions, not belittling the pain and suffering to the patients and their families. Nevertheless, Pakistan is making good progress in various fields and has positive plans for the immediate future. These include:

• The formulation of a national policy for thalassaemia
• The upgrading of blood transfusion services and the quality control of all blood banks, in both private and
public sectors
• The public/private collaboration in thalassaemia services with quality control
• The propagation of the prevention programme to all provinces (currently only effective in Punjab)
• The creation of a reference centre for treatment in each province, by the Bait-ul-Mal foundation
• An agreement of collaboration between Bait-ul-Mal and TIF is planned, for technical support