The life of thalassaemia major patients is an uphill struggle. The recent case of IAS aspirant Sukhsohit Singh being refused a job because he is thalassaemia major has brought the attention back on the patients here suffering due to the indifference of authorities.
The patients suffering from this genetic blood disorder need blood transfusion every 15-20 days. Most Delhi government hospitals have dedicated thalassaemic wards for this but the service is not able to keep pace with the rising numbers. Many complain of being pushed around from one hospital to another for blood transfusion, some even talk of landing up next to bodies at the emergency ward.
Anubha Taneja (30) says: “I have been going to the thalassaemia ward of the Kalawati Saran Children's Hospital (KSCH) since the age of three for blood transfusion. In 2008, we were told we can't avail ourselves of the service anymore as it is a children's hospital.”
Anubha, along with 18-20 other patients, “didn't know what to do suddenly” as getting entry to thalassaemic wards in other government hospitals “is difficult considering they already have their regulars.”
“So, the KSCH sent us to Irwin Hospital. Since it doesn't have a dedicated ward, they told us to get admitted for two days for blood transfusion, which is not practical,” says Anubha, a practising lawyer. On request, the KSCH referred them to its affiliated institution, Lady Hardinge Medical College (LHMC)'s Srimati Sucheta Kripalini Hospital (SSKH).
“Horrible experience”
Though they did not have to stay overnight at SSKH, a new problem popped up. With no dedicated ward, patients are to report at the emergency.
“It is a horrible experience, once I had a body lying next to me. Since there are always urgent cases, we have to wait for long. As such we need the whole day, first to source the blood either from Red Cross or from the hospital's blood bank, get it cross matched and then get the transfusion done,” says Anubha.
Another former KSCH patient, 19-year-old Prateek Arya, who comes from Hissar for the transfusion, also complains of delays at the SSKH. “Earlier, I used to take the 5 o'clock train back, now I can't.” In frustration, he sometimes goes back to KSCH and pleads with the nurses there for transfusion.
Separate ward sought
Patients had petitioned the then LHMC director in February, 2009, seeking a separate ward following which Dr. Anupam Prakash, Department of Medicine, LHMC and SSKH, wrote to the director in April 2009, recommending it with “six to eight beds.” Since this didn't bear fruit, Anubha's father, A.D. Taneja, filed an RTI application in October 2009.
“LHMC's response to the application was non-committal,” says Anubha.
This year, she has given a fresh petition to the new LHMC director Atul Murari, following which the Ministry of Health and Family Welfare wrote a letter this May asking him to look into the matter. “Since then I have been trying to fix an appointment with him,” rues Anubha.
However, A.K. Dutta, head of Paediatrics, KSCH, and additional director at LHMC, says, “I have been told that four dedicated beds will be arranged by the LHMC soon.” Attempts to get across to the LHMC director failed.
Patients availing themselves of the service at other government hospitals have similar stories to relate. Says Avneet Dhingra: “I tried the AIIMS and LNJP hospital. The service was not good. Since I can afford it, I opted for the Ganga Ram Hospital.” Every fortnight, she spends Rs. 3,500-4,000 in blood transfusion. “At times I take free blood from Red Cross to lower the expenses,” she says. Since the ward is small, Avneet has to book in advance.
However, not all are as lucky. Take Sangeeta Vohra, an orphan, “I am forced to take the free service at a government hospital because I can't afford that kind of money.”
Shruti Khamboj, a regular at NDMC Hospital, talks of the lack of space for new patients. “There are 12 beds there, I've not seen anyone new coming.” Adds Anubha: “The KSCH has over 200 thalassaemic children at present. With no system in place I wonder where they will go after they turn 18.”
Preventable
Looking at the bigger picture, Shobha Tuli, Secretary, Thalassaemics India, comments, “Our government needs to learn from other countries.”
Among things that Ms. Tuli is asking is a mandatory pre-pregnancy test for thalassaemia. “It is a preventable disease. Why does not the government do something?” There is also an urgent need to introduce NAT testing of blood samples and make available both oral and injectable chelators with pumps at government hospitals. “Due to regular blood transfusion, high doses of iron get accumulated in the vital organs, which can lead to fatalities. It also affects normal growth. So it is important to have NAT technology at blood banks,” states Ms. Tuli.
At their Thalassemia Day function on May 8, Delhi Health Minister A.K. Walia promised to look into it. Ms. Tuli says, “Since then, we have been trying to meet him.”
At present, there are around 6,000 thalassaemic children in India out of which 2,400 are in the NCR. “There are about 200 births of thalassaemics a year in Delhi. Many die before they turn 20 and this is preventable,” Ms. Tuli points out.
