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Project Pakistan



Background

In Pakistan (photos) Cure2Children is supporting the cure of children with thalassemia major, the most common deadly genetic disease. This target was chosen as a priority for several reasons:
 

a) a huge case load with approximately 50,000 children suffering of this disease in Pakistan;

b) a high curability of low-risk cases with a compatible sibling donor;

c) well recognized expertise from Italy thanks to professor Guido Lucarelli;

d) a chronic disease which allows time for appropriate preparation of the transplant procedure;

e) families generally aware of the severity of the disease and thus very committed to its treatment;

f) a strong involvement of a very active Pakistani couple whose daughter was cured from thalassemia in Italy.

The preparation phase started in February 2007 with the first local visit. Since than, several meetings and workshops have been organized to share recommendations and procedures as well as institutional agreements. In April 2008 the first patients have been identified and in September the actual transplant activity was started at the National Institute of Blood Diseases in Karachi according to the same protocol applied in Italy. In January 2009, two new centers were inaugurated and have started bone marrow transplantation, one at Shifa International Hospital in Islamabad, and the other at the Pakistan Institute of Medical Sciences. The latter was fully supported by the Cure2Children Foundation, and is the first bone marrow transplant unit in the public civil sector in Pakistan. This project is also aimed at the support of involved families as well as at screening and prevention of thalassemia.

The ultimate goal is not only to save the lives of many children and help their families but to contribute to professional independence, scientific visibility, and local ownership of transplant centers in Pakistan.

 

Aim

Support financially and professionally local institutions and families in order to provide the best available treatment to children with severe diseases such as thalassemia and prove that in many instances the same procedure performed in Italy can be safely and successfully applied in Pakistan. The focus is on promoting sustainability, local ownership and professional self-reliance.

 

Means

  1. Shared guidelines and procedures pertinent to local reality
  2. Diagnostic support
  3. Daily communication via web-based tools
  4. Monthly visits of health professionals
  5. Procurement of drugs and other supplies for the management of affected children
  6. Financial support and counselling of involved families
 

Activity summary as of September 2009

Training courses

Local employees

Children assessed

Family members assessed

Children transplanted

Current status

Supported families

(500 euro/month)
3
15
160
340
20
83% probably cured
8
 

Overall expense: so far approximately 400,000 Euros

 

Milestones

1.    February 2007: first visit to Pakistan (read) (photos). 

2.    June 2007: second visit to discuss plans and memorandums of understanding. (photos)

3.    March 2008: given the tense and uncertain political situation in Pakistan at the end of 2007 (emergency state declaration of November 3rd 2007, assassination of Mrs Benazir Bhutto on December 27th 2008) a workshop was organized in Siena with key representatives from Pakistani and Italian institutions to discuss general principles as well as treatment guidelines, procedures, and administrative aspects (read) (photos). 

4.    July 2008: meeting with the first families supported by Cure2Children (read).Visits to Badin, a rural area with a very active and well organized thalassemia center (read), to the National Institute for Childhood Health in Karachi (read), Pakistan Institute of Medical Sciences (read), and Shifa International Hospital (read). In Lahore meeting with possible supporters of the project (read) and training course at the Shaukat Khanum Memorial Cancer Hospital (read) (photos).

5.    August 2008: the first child undergoes bone marrow transplantation from his compatible sister at the National Institute of Blood Diseases in Karachi (read) .

6.    September 2008: training course for nurses in Islamabad (read).

7.    January 2009: inauguration of two bone new marrow transplant units in Islamabad at Shifa International Hospital and Pakistan Institute of Medical Sciences (the latter completely covered by Cure2Children) (read and first bone marrow transplant in a public hospital in Pakistan (read) (photos).

8.   September 2009: the first 20 bone marrow transplant procedures suported by C2C in Pakistan. Outcomes are comparable to those obtained in rich countries with one tenth of the cost.

 

Future plans: to extend the network offering screening, prevention and treatment of thalassemia major in Pakistan and to developp a local state-of-the art laboratory.