LAHORE: The Punjab Thalassaemia Prevention Programme (PTPP) has been found lacking in various vital areas concerning children suffering from the condition as well as their parents, since it was established in 2009, an evaluation report points out.

The report prepared by the Director General Monitoring & Evaluation Planning & Development Programme of the Punjab government took a detailed overview of the project and identified ‘extreme operational gaps and mismanaged allocation of resource (both human and capital) in the PTPP’.

The report made many alarming revelations, besides identifying several small-scale scams within a “mega scandal”, while analysing the project.

One of the most disturbing parts of the report is that the PTPP has been procuring and using expired medical items -- vials, syringes, reagents etc for the thalassaemia children all over the province.

“Out of 96,000 vials about 67,000 have expired or near expiry and the PTPP has forced the field officers to use them”, the report says.

While only 30,000 vials and syringes were needed, the project administration procured 96,000 vials and 200,000 syringes. “All vials had expired or near to expiry which needs justification from PIMU office” (sic), it said.

Since its establishment, PTPP used only 30,000 syringes and vials but in 2014 ignoring the past consumption pattern (i.e. 7,500 per year), the project procured 173,000 syringes and 84,000 vials. The PTPP directed the regional offices to use these expired vials, it says.

About Rs17 million were spent on DNA lab but it was not made operational since its establishment in 2010. Instead, The DNA analysis facility was outsourced by giving a huge amount of Rs5.7 million to a private lab -- Genetic Research Centre (GRC), Rawalpindi, the report says.

“An inquiry needs to be initiated by admin department into non-operationalisation of DNA lab and loss (caused) to public in general in shape of fees paid to private labs and public exchequer in particular in shape of salaries paid”, it says.

Titled “Evaluation Report on PTPP June 2015”, the report has been forwarded to the chief minister with evidences, recommending ‘merciless’ action against some officials, holding them responsible for the injustice meted out to the thalassaemia children.

It has also proposed a high-level probe by the Chief Minister Inspection Team into the “scam” to fix further responsibility. (A copy of the report is also available with Dawn)

The report mentions thalassaemia is the most common genetic disorder in Punjab with a gene prevalence rate of 6pc. This means six out of every 100 people in Punjab carry this mutant gene. An estimated amount of Rs180,000 is required for treatment of each child patient per year, it adds.

The bone marrow transplant, the only permanent treatment to the disease, was currently not available in any public sector hospital in the country.

“The PTPP can only be ranked as failed intervention keeping in view poor performance, implementation and willful negligence by project staff, though the purpose was noble and design of the project was excellent,”the report says.

The PTPP started in March 2009 with a cost of Rs147.4 million. Later, it was revised on Sept 2010 with a cost of Rs162.358 million at Departmental Development Sub Committee (DDSC) forum and second revision was done in December 2014 with cost of Rs196.835 million with the objective of introducing thalassaemia preventive measures by intervening in 22 districts through four regions.

Four centres were established in Punjab under the PTPP, including Lady Willingdon Hospital Lahore, Children Complex Hospital, Multan, Bahawal Victoria Hospital, Bahawalpur and Holy Family Hospital, Rawalpindi.

An executive agency was also established as ‘Project Implementation and Monitoring Unit (PIMU) at the Lady Willingdon Hospital, Lahore.

The report says the PTPP could detected only 1pc of total prevalence in Punjab. “Out of 6,000,000 carriers in Punjab, the PTPP detected only 7,837 people”, the report says.

Report points out flaws in Punjab Thalassaemia Prevention Programme

Out of approved list of human resource, only 47 posts were filled while 41 remain unfilled. “It is pertinent to mention that most of the districts as per PC-I supposed to be operational but on ground they were non-operational. Only one field officer was working in entire Bahawalpur region while rest of districts were left at the mercy of Allah”, the report shared with regret.

It says senior molecular biologist and molecular biologist were supposed to operationalise the DNA lab set up at a cost of Rs17 million but due to lack of interest of the project’s director, the facility, till June 2015, did not generate even a single report, it says.

As per PIMU record, a total of 1,035 Chorionic Villus Sampling (CVS) tests have been conducted so far, out of which 311 fetuses were declared having thalassaemia major, 494 thalassaemia minor and remaining 230 as normal. It was unfortunate that termination of 311 fetuses has not been ensured through any documentation or written evidence.

These results seem to be doubtful, hypothetical without the formal record, it says “Hypothetically if single child out of 311 fetuses, has born then complete exercise of CVS leading to DNA testing will be futile”, the report says.

Samples for carrier screening supply chain management (from regions to PIMU Lahore office) also seemed an area that lacked proper strategy.

It says a private courier service was hired by PIMU that delivered the blood samples to its Lahore office from regions in the summer heat of 45-50 degrees C in paper cartons. It raises question about validity of CBC and HPLC tests conducted and their reports at PIMU level.

The report also gives a region-wise overview of the project, showing scale of mismanagement and criminal negligence in treating thalessemia patients.

About Multan Region, it says: “It was observed by evaluation team that Chorionic Villus Sampling (CVS) sampling facility was not operational which as per PC-I was supposed to be managed at regional office despite the fact that highest prevalence of thalassaemia disease was in this region which has also been recorded in PC-I”.

Till the time of evaluation only 158 pregnant women were referred to Sir Ganga Ram Hospital, Lahore, for CVS. Most of these women from the region could not avail the opportunity as they could not afford the cost of traveling, accommodation and food, which accumulates to approximately Rs20,000. Out of these 158 CVS tests, 35 fetuses were diagnosed with thalassaemia major.

“The Regional Office Multan has no record of these 35 patients, leading to conclusion that the Region has no idea that whether abnormal pregnancies have been terminated or otherwise”, the report says.

Even sensing the acute need of CVS in Southern Region, no gynecologist has been trained or hired which shows clear violation of PC-I. It was observed that CVS reports with final diagnosis reached Multan Region quite late i.e. after one month.

Evaluation team noted that even after CVS test diagnosed a fetus with thalassaemia major, a child (of Mr Ghulam Yasin) was born due to lack of assistance by the PIMU for termination of abnormal pregnancy.

“The child is of six months now and he will again go through the painful blood transfusion and chelation”, the report says.

After stock verification, the regents and vials provided by the PIMU to Multan region were found expired or neared expiry. On an inquiry, the evaluation team was informed by an official that the PIMU had been informed about the situation through an email but it did not bother to terminate the stock as per rules.

As per PC-I the PIMU was supposed to provide HPLC (a tool for detection of hemoglobin variants) facility at regional level but it was not done. Due to this very reason the results of tests were delayed leading to agitation by patients. However, a new HPLC equipment was provided on May 4, 2015, but it again could not be operationalised, the report says.

In Bahawalpur region, the team observed that CVS sampling facility was not operational. The women with their first trimester (when major development of their fetus occur and profound physical and emotional changes happen) had to travel about 1,000 kilometer for their CVS tests in Lahore.

The report says only 41 pregnant women were referred to Sir Ganga Ram Hospital Lahore for CVS from the region. Many of them missed the opportunity as they could not afford the cost of a visit to Lahore.

“Had CVS facility been provided to the people of Bahawalpur, about 2,000 CVS procedures would have been done so far”, the report says.

Out of total 37 CVS tests, the regional centre had no record of termination of 10 pregnancies where fetuses were diagnosed with thalassaemia major.

Despite sensing the acute need of CVS in Southern Region, no gynecologist has been trained or hired in clear violation of PC-I, it says.

The DNA analysis was being performed in a private lab (Genetic Research Centre) in Rawalpindi and each test costs about Rs5,500 – Rs7,500. The report deplores that the Rs17m DNA lab, since its establishment, failed to generate even a single report.

It points out that no complete blood count (CBC) tests were conducted at the regional office as the machine reached there on June 4, 2015 and was still lying packed because the regent for it was not sent by the PIMU.

The report says that out of five district of Bahawalpur region, only one was found operational. The rest were nonoperational due to shortage of field officers.

“As per discussion with Regional Coordinator, only Rahim Yar Khan district had more than 800 registered thalassaemia major children but no one approached them to screen their families”, the report says.

It says over 266 families had carrier screening which was very low against the prevalence in the (RYK) region. Not a single family was screened from RYK district which needs to be explained by PTPP mangers.

“At the time of visit, almost all the vials were found either expired or neared expiry but were being use by the field officers”, the report says.

The PIMU again failed to provide HPLC in the region, resulting in delay in tests results. HPLC equipment was provided to the region on May 4, 2015 which was not in use till the time of visit of the evaluation team.

It was also observed by the team that no hematologist for consultation was hired till the time of the visit.

similarly, the Rawalpindi region, the report says, was providing CVS facility and related accessories to the patients from its own resources.

In the region, out of total 405 CVS tests performed, 114 cases of thalassemia major were diagnosed. But the regional as well as PIMU office had no evidence of termination of pregnancies.

Again, no CBC equipment was provided to the region, while the vials for blood screening were also expired. PIMU did not tell the staff concerned in the region to discard them or return them back, it says. It too lacked HPLC facility and a hematologist.

With regard to Lahore region, the report says the CVS procedures were not performed here till August, 2014 and the pregnant women were shifted to various private clinics.

The report sough justification for non-provision of the facility before August 2014.

Out of total CVS tests performed in the region, several cases of thalassaemia major were diagnosed but the PIMU office had no evidence of termination of these pregnancies again.

Only PIMU office (in Lahore) was providing the HPLC facility. Due to non-provision of HPLC facility in other regional centres, the target of screening 800,000 people could not be achieved, the report deplored.

Published in Dawn, June 29th, 2015

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