It has been exactly a month since a couple from Alappuzha and their nine-year-old daughter saw their lives turned completely upside down at the Regional Cancer Centre in Thiruvananthapuram.
Just when they were counting down the days to when the young child would be free of leukaemia, they found out to their absolute shock that she had contracted HIV, allegedly due to a blood transfusion done at the RCC.
Even as they struggle with the shocking circumstances that have descended on them, the girl’s parents are determined to fight for justice, and to ensure that such a trauma does not fall on anyone else. On Friday, the girl’s mother approached the High Court seeking a Central government inquiry into the case. The petition has sought for an inquiry led by the Secretary of the Ministry of Health and Family Welfare as well as the Chief Secretary of the state.
While the report of the high-level inquiry by Joint Director of Medical Education Sreekumari is yet to be made public, the RCC has received a clean chit from the Kerala State AIDS Control Society (KSACS). The KSACS report said that the Centre had followed all the mandated protocols for screening blood donors, and was not at fault. But this has done nothing to quell the anger and pain of the child’s parents.
“It was a massive shock to find out that my daughter has HIV. We were sure that the cancer could be treated. But now, my wife has not a single tear left in her eyes, as she has been crying and crying since we found out,” says the girl’s father.
The RCC has claimed that the incident is an unpredictable one, since HIV cannot be detected in donors in a window period of four to 12 weeks of contracting the disease. But the girl’s parents say that the casual insensitivity with which doctors responded to their daughter’s HIV diagnosis makes them suspect that this is not as rare and unpredictable a case as the RCC claims.
“We believe that this is not the first time, that this is not a rare instance. RCC says that the last time it was happened in 2013. If so, the doctors wouldn’t have been so cool in their response. They told us that there is a capsule for it and it is just like taking a daily capsule for blood pressure. How could they have been so cold in their response if this was a rare instance?” asks the father.
He alleges that throughout the entire episode, the RCC staff has behaved in an apathetic and non-transparent manner that makes them suspect a cover-up. “What hurt us most was the behaviour of the hospital staff. Before we realized the fact, one day they asked my wife to clean the bed sheet on which a drop of blood had fallen. They kept on asking if we had a separate bucket and so on, and they were reluctant to touch my daughter,” alleges the father.
The family allege that they were kept completely in the dark until the girl’s mother noticed by accident that the column on HIV status had been kept blank on a blood test result. Even after that, they were suddenly made to undergo a blood test together with their daughter at the nearby Medical College Hospital, without any reasons being given for why the parents’ blood was being tested too.
“My wife is a graduate, and only because of that she was able to realize that something was wrong with the blood test result. I have studied till Class 10 only. The doctors were keen to know my educational qualifications, I think, because they thought that I would not take the issue beyond a point,” says the father.
“The incident has come to light because me and my wife were so keen that it shouldn’t happen again. We dared to bring the issue to the notice of the media. What if we hadn’t done that? Nobody would have come to know about it,” he adds.
While giving RCC the clean chit, the KSACS also recommended that the screening procedure at the blood banks in leading government hospitals be updated to include the Nucleic Acid Amplification Test (NAT), which drastically reduces the window period to around 10-12 days. For the family this recommendation comes as too little too late.
If the RCC is a distinguished centre for Oncology in Asia, asks the father, why do they not possess the best technology for testing blood? “Now they say that RCC does not have the most modern machinery to detect the presence of the HIV virus in blood. Why don’t they have it?”
With the father performing daily wage work, and the wife being a homemaker, the family was already struggling to deal with the long and expensive chemotherapy treatment for leukaemia. It is only thanks to the support and generosity of people from their hometown, including the members of a club there, that the family has managed to pay for the four out of five rounds of chemotherapy completed so far.
Now the HIV diagnosis has opened up a yawning chasm of uncertainty in their lives. “We were counting down the chemotherapy dates. She was eager to go back to school. Now we are not sure when the final round of chemo will happen, and when she will be able to go back to school.”
Even in the middle of all this, the parents are happy for one small act of kindness, from the girl’s teachers, who visited her in the hospital. “They brought her fruits and even kissed her on her palms,” says the father softly.
Looking ahead to the future, the father says that it is now the government’s responsibility to ensure that his child receives all the support she needs. While the Health Minister has announced that the government will bear the treatment expenses of the child, her father says this is not enough.
“We need much more support. We will have to send her to school once we are back to home. We need to ensure that she is not socially isolated, and for that we need government support,” he says.