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Updated: July 17, 2011 12:01 IST

For thalassaemics, life is a constant struggle

Sangeeta Barooah Pisharoty
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Anubha has been undergoing blood transfusion since the age of three. Photo: Special Arrangement
Anubha has been undergoing blood transfusion since the age of three. Photo: Special Arrangement

Many patients are pushed around from one hospital to another for transfusion

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.

I feel sorry for the adult thalassemic patients who could not get good service at the govt. hospitals. But the real truth is any kind of service provided by the govt. is sub standard. I don't need to stress nth number of times the reason for that. The real solution lies in forming the Thalassemia Charity where every patient can contribute what they can and collect some donations from the common public. Buying instruments and chelation treatment by a charity costs a fraction when compared to the govt. the reason all the indians know. They can donate those to the Govt. Hospital and get the treatment. The charity can form a voluntary blood donor lists and I am sure most of the Indian citizens are quite happy to donate blood. By coordinating between all the stakeholders, which is a mammoth task in Govt. Sector, but whereas it takes just a phone call can make a dramatic change in waiting for all the formalities.Best wishes for the prosperous future.

from:  R.Manivarmane
Posted on: Jul 19, 2011 at 14:37 IST

In Chennai Thalassaemia Welfare Assn. is functioning under Dr.Revathy Raj,Haemotologist at Apollo Hospital and ably supported by Rotary Central TTK VHS Blood Bank for requirement of Quality Blood Products to Thalassaemics. Monthly Blood transfusion is done free of cost, But chelation therapy at subsidized rate. We have 180 members out of which 90 thalassaemics have regular monthly transfusion at our Center. We also give monetary help for Pre-Natal test for expectant mothers of thalassaemics in coordination with Mediscan, and Sir Gangaram Hospital. We also carry out Blood tests to find about the carrier/non carrier Status of the parents at a nominal fee. All the above are done through donations of well wishers. If Government helps us the Blood test can be done to students at College level to decide about their future marriage partners to reduce or eliminate future birth of Thalassaemics. We have done 12 BMTs in past 3 years. We need lot of donations to achieve more donations. Help us.Contact No. Office:044 22542829/22541692 Mobile: 9444116047. Contact person. Ganesan

from:  Secretary
Posted on: Jul 17, 2011 at 14:11 IST

Educating the public and physicians about the prevalence of thalassemia, easy access to reliable testing (carrier and prenatal), and access to genetic counseling are absolutely essential to effectively deal with thalassemia. Maternal screening (followed by paternal screening, if indicated) during the first prenatal visit with the obstetrician is required in identifying couples at risk for having a child with thalassemia. Pre-martial or pre-conception screening would be preferred, if feasible. Genetic counselors have an important role in this process. They are trained in coordinating the testing process, conveying the implications of the results to the couple, supporting the family with their decision and arrange for help with needs related to their decision. However, all the above mentioned require that reliable and adequate laboratory, clinical and treatment facilities are available.

from:  Maya Thangavelu Ph.D.
Posted on: Jul 17, 2011 at 08:15 IST
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