Islamabad - The reports of infecting thalassemia children with HIV/AIDS through contaminated blood transfusions have turned out to be a hoax, says a preliminary inquiry of ministry of national health services regulations & coordination. A two-member probe committee in its report has declared as baseless the allegation of detection in Lahore of HIV infection among 14 thalassemia patients through contaminated blood transfusion.
The inquiry was ordered by the Minister for National Health Services Saira Afzal Tarar to investigate media reports about the detection of HIV infection, through contaminated blood transfusion, in 14 thalassemia major children in Lahore.  In its findings it has been declared that “the reports were baseless and there is no existence of any thalassemia patient with HIV infection.”
“It was an irresponsible sweeping statement given by Prof Yasmeen Rashid, Thalassemia Federation of Pakistan (TFP) General Secretary and Pakistan Tekreek-i-Insaf (PTI) leader, without any proofs which she has regretted now,” said Prof Hasan Abbas Zaheer, National Coordinator Safe Blood Transfusion Programme, who was also one of the members of the inquiry committee. Dr Sarfraz Jafri, Vice President of TFP, has also maintained that the federation had no knowledge about the issue and it was a statement issued by an individual.
The ministry in a statement issued on Saturday maintained that the committee in its findings reported that “the Thalassemia Federation of Pakistan has failed to provide the list of the 14 patients and their laboratory reports. The Federation has actually disassociated itself from this controversy and denied any knowledge about these HIV positive thalassemia patients. Not a single name or thalassemia patient out of the 14 could either be found by the inquiry or presented by the foundation.”
The Punjab government had also constituted a four-member investigation team to probe these unconfirmed reports. And the Punjab health department investigation team has also failed to locate any of these 14 alleged HIV positive cases.
Furthermore, National AIDS Programme has also informed that no samples of any suspected HIV-positive thalassemia case has been received in the recent past from Lahore or Rawalpindi/ Islamabad for confirmatory testing in their national referral laboratory in Islamabad.
According to the National HIV Testing Policy and the World Health Organisation (WHO) recommendations, HIV infection diagnosis is only established after confirmatory testing through western blot test, an expensive and sophisticated laboratory investigation which is available free of cost at the National AIDS Programme National Referral Laboratory. All stakeholders working in the HIV/AIDS sector in Pakistan are familiar with this protocol and coordinate with the NACP and utilise the services of the National Referral Laboratory for the management of their suspected cases.
The findings also advised exercise of caution in such matters as the patients suffering from thalassemia disorder already suffer from stress and emotional issues due to chronic shortages of blood and lack of access to treatment. The report expressed serious concern at issuance of statement which was later not owned and those issuing such unsubstantiated statements have caused serious harm in terms of shaking the confidence of thalassemia patients who require continued transfusion of blood and caused them irreparable stress and torment. Those responsible for issuing such unsubstantiated statements must apologise to all thalassemia patients and be held accountable for their actions, it recommended.
Though this particular assertion was unfounded, all is not well. Officials say the state of blood transfusion settings across the country is not up the standards and blood screening is not performed according to the quality system requirements and availability is also not according to the needs of population.  
Although at the federal level blood transfusion authority ensures screening of blood and blood products for infections prior to use, transfusion authorities under the provincial governments are not working properly and there is a need to enhance the capacity of provincial blood transfusion authorities to maintain minimum standards. And screening should be mandatory for HIV, Hepatitis B, C and syphilis, said Prof Zaheer. And import of substandard kits must be ended and the government should formulate national thalassaemia policy to control the rising disease, he stressed.
The controversy had erupted when during the 9th National Thalassaemia Conference & Workshops held in Lahore from Nov 29-30, 2014, Prof. Dr. Jovaria Mannan, Chairperson, Medical Advisory Board, TFP informed the participants that there is a very high incidence of Hepatitis B and C in transfusion dependent Thalassaemics in the country as up to 80 percent of Thalassaemia patients are Hb B or C positive. She also said that recently a small number of Thalassaemics have also been found to be HIV positive.
But the information was not specific to any particular Thalassaemia center or city but highlighted the deteriorating blood screening throughout the country, the TFP had clarified later.
At Pakistan Institute of Medical Sciences (Pims) out of registered Thalassemia children around 150 are infected with Hepatitis C and one with HIV, according to Dr Nalia Yaqub, pediatrician at Children Hospital-Pims. The children coming from far-off areas have contracted the infections through multiple transfusions where even blood is not screened either, she said.  
The life expectancy of Thalassemia major patients has increased up to 40 to 50 years in developed countries but here Thalassemia children are born to die at early age, according health experts. It has been observed average life of Thalassemia patients is 20 to 25 years due to lack of proper blood transfusion and other medical care facilities they need.   
According to estimates currently over 1 lac people suffer from thalassemia, a hereditary disorder in which life of patients depend upon frequent blood transfusions. And 5000 to 7000 thalassemia children born every year with this disorder are adding up to the number, says Ayesha Abid, President Thalassemia Awareness and Prevention in Pakistan (TAPP). Ideally, HB Electrophoresis test should be done before marriage to avoid marriage between two Thalassemia carriers but if they marry then in every pregnancy a woman should consult doctor in first three months of pregnancy for Chorionic Villus Sampling (CVS) to avoid thalassemia major baby, she suggested. “The ultimate solution is to get yourself tested for Thalassemia before it tests you.”