Prof. Hasan Abbas Zaheer, National Coordinator, Safe Blood Transfusion Programme,
M/o National Health Services, Regulation & Coordination, Government of Pakistan
The international thalassaemia community has designated May 8th as the World Thalassemia Day. The Day is celebrated all over the world to raise awareness about this disease, commemorate the thalassaemia patients who are no longer with us and to celebrate all those patients who are alive and fighting everyday for their right to a better quality of life.
With an estimated 8-10 million carriers and 6% prevalence, thalassaemia is the most prevalent preventable genetic blood disorder in Pakistan. Out of an estimated 100,000 thalassemia major patients in Pakistan, only about 22,000 are registered with various private and public sector Thalassaemia centers in the country and receive partial or proper treatment. The remaining patients remain undiagnosed, die early or lack access to healthcare facilities. Due to lack of proper medical, transfusion and diagnostic facilities in the public sector hospitals, timely diagnosis are often delayed. However in the recent past with the improved awareness of the disease more cases are being detected especially in the urban centers. These patients do not require hospitalization yet need regular transfusions. Ownership of such patients is poor in the government hospitals. This has resulted in a mushroom growth of thalassaemia centers and blood banks in the private NGO sector.
The blood transfusion system in the country is fragmented with more than 2000 blood centers functioning across the country with limited regulatory oversight. The system is demand driven, where partners work independently and in isolation. This disjointed state of affairs makes provision of quality service to the large population a very challenging task. The role of the private non-profit sector in blood transfusion has increased in the recent decades, largely as a result of increase in the demand of transfusion, driven to a large extent by the huge burden of thalassaemia disease in the country. Blood banks carry out all or some of the processes of the transfusion chain, i.e. blood collection, testing, processing, and distribution. There is generally no separation between manufacturing units (Blood Centres) and ordering units (Blood Banks), which has an impact on the organization of services.
To improve this state of affairs, in 2008 the Government of Pakistan developed a vision of an integrated blood transfusion service as recommended internationally and practiced in most countries of the world. This policy decision led to the introduction of an ambitious blood safety systems reform process in the country through the platform of the Safe Blood Transfusion Programme (SBTP), a national project co-funded by the governments of Pakistan and Germany. The aim of the project is to develop a new infrastructure consisting of a network of new Regional Blood Centres (RBCs) linked to existing Hospital Blood Banks (HBBs). The functioning of the new infrastructure will be in compliance with international practices, guidelines and recommendations.
The new Programme created a high visibility environment to promote a state of the art national blood transfusion system as part of its health services. Required resources for national and provincial safe blood transfusion programmes were defined and approved in PC-1s, while national and provincial commitment was enhanced by the German support through technical advisory services (GIZ) and the establishment of a network of fully equipped regional blood centres in strategic areas throughout the country (KfW). The Programme has continued to scale up visibility through a series of strategy and training workshops on all aspects of blood safety. Apart from creating a conducive environment for sustainable blood programmes within their health systems, efforts are made to strengthen the capacity of system governance and safe blood transfusion practices through institutional and regulatory reforms.
For the first time in Pakistan, a national platform of transfusion sector stakeholders has been created through the aegises of the Programme. The other remarkable achievements of the Programme include the development of a new National Blood Policy and the Strategic Framework; the approval of PC-1 of the programme by the CDWP; the development of provincial PC-1s; construction of new modern regional blood centers; up gradation of existing hospital blood banks, procurement of equipment and MIS systems; regulatory authorities strengthening and initiation of administrative measures to operationalize the new centers and system. The first phase of the project is nearing successful completion and the second phase agreement is ready to be signed between the German and Pakistan government.
Regular blood transfusions to the ever increasing number of thalassaemia patients have placed a huge burden on the national healthcare system in general and the transfusion system in particular. In the presence of an inadequate system, blood transfusions thus potentially pose a serious risk to the health of the transfusion recipients especially the chronic recipients like the thalassaemics. Most of these patients still receive whole blood transfusions as facilities for blood component preparations are not available in most of the blood banks. Blood collection in majority of the blood banks is still out-sourced to the patients and there is little reliance on regular voluntary blood donors. As a result most of the thalassaemic population remains under-transfused. Due to resource constraints blood filters are rarely used. Testing is performed for the two major blood groups only and thus the patients have a higher incidence of transfusion reactions due to allo-immunization. The thalassaemics also have an accumulated higher percentage of HCV, HBV and HIV infections due to lack of proper serological screening systems, equipment, sub-standard kits and untrained ill-informed workforce. And due to poor medical management including lack of chelation therapy or poor compliance, iron overload is common in these multi-transfused patients resulting in growth retardation, cardiac toxicity, endocrine dysfunction, liver toxicity etc.
The annual collection of blood in Pakistan is estimated to be 3.5 million out of which about 30-40% are believed to be consumed by the thalassaemia patients although only about a quarter of the total thalassaemia patients have access to the transfusion service. Thalassaemia patients are thus the single largest clients of the blood transfusion service in Pakistan and also the main cause of the chronic shortage of blood in the country. Control of spread of this genetic disorder and improved management of the patients therefore remains the main barrier in the reform of the blood safety systems in Pakistan.
Pakistan is witnessing an unchecked rise in thalassaemic population due to lack of a nationally coordinated effort to control and prevent thalassaemia. There is no national policy on thalassaemia, no national level prevention, control or management strategies. In addition, there are limited treatment and diagnostic facilities for patients in the public sector hospitals. At the same time consanguineous marriages are very common and there is limited access to education and health facilities which contribute to the entrapment of thalassaemia genes within the affected families.
An erroneous misconception exists in a large segment of the stakeholders and policymakers that thalassaemia can be eradicated through enactment of legislation for mandatory screening before marriage. The provinces of KP and Sindh already have such legislations for compulsory screening for the couples before marriage. Other provinces are also considering similar legislations (Punjab and ICT). However, the implementation of these legislations has been unsuccessful due to lack of political commitment, absence of an implementation mechanism, poor planning, ill-advised strategy, lack of resource allocation, limited diagnostic facilities, absence of regulation of the diagnostic sector, poor treatment facilities etc. It is pertinent to mention here that the half hearted piecemeal efforts in the different parts of the country to prevent the spread of thalassaemia are being carried out in complete isolation and without any coordination between the provinces or the concerned stakeholders.
The need of the hour is that Pakistan should learn and benefit from the rich regional experience of eradicating thalassaemia and adopt it to our national needs and requirements. In the light of the successful efforts of the other countries to control thalassaemia, a national consultation, facilitated by international partners, with concerned experts, health departments, stakeholders, NGOs, patients, international donors etc. need to be conducted which should comprehensively deliberate on all aspects of Thalassaemia including prevention, control strategies, medical management, prenatal and routine diagnosis, uniform and effective legislation, transfusion protocols, public awareness, research and development etc. The output of this exercise should be the development of a consensus National Thalassaemia Policy. On the basis of this National Policy, an Action Plan should be developed and recommendations submitted to the government for thalassaemia prevention as it is essentially the responsibility of the government to ensure that in this day and age, a preventable hematological is eradicated from the society and until such time that this objective is achieved, best possible service and care be provided to the existing thalassaemia population to enable them to live as healthy members of the society as in many other countries.
The Safe Blood Transfusion Programme, Ministry of National Health Services Regulation & Coordination, has initiated consultations with Thalassemia Federation of Pakistan to lead the national effort to work on the above proposed strategy. The SBTP is also coordinating with the Thalassaemia International Federation and seeking its technical assistance to develop a National Policy and Strategic Framework on Thalassaemia prevention and management preceded by a rapid situational assessment by TIF experts. The World Health Organization is also supporting these SBTP efforts. The Pakistan Red Crescent Society and the resident mission of the International Federation of Red Cross & Red Crescent in Pakistan are also expected to join in this effort soon.
It is expected that the coordinated and dedicated efforts of all concerned will bear fruit soon and the partners will be in a position to present their recommendations to the government to initiate national efforts to prevent, control and manage thalassaemia in Pakistan in a holistic manner.
