Internet + Imagination = A new life
When Tulika Verma checked into a Delhi hospital for her second delivery, she was calm and relaxed, looking forward to taking her second baby home to bond with their two-year-old daughter.Moments after Arjunuday was born, though, the doctor told her he had multiple congenital defects. And a very rare blood type. "All I can remember of those first few weeks," says Rahul, Tulika’s husband, "is the endless phone calls and SMSes as we tried desperately to find matching blood donors for our baby."delhi Updated: May 02, 2013 15:31 IST
Moments after Arjunuday was born, though, the doctor told her he had multiple congenital defects. And a very rare blood type.
“All I can remember of those first few weeks,” says Rahul, Tulika’s husband, “is the endless phone calls and SMSes as we tried desperately to find matching blood donors for our baby.”
The couple would stay up all night, sending out text messages to friends, radio stations, TV channels. “With all the stress of an ailing infant, it was almost more than we could take,” says Tulika.
For the Vermas, the nightmare ended when Rahul set up his own online registry of donors, through website rarebloodgroups.org. But the MBA in finance marketing had to give up his job to run the site.
With their limited finances and virtually no expertise, the Vermas have raised a bank of 5,000 committed donors in a little over two years. They even have 20 donors registered for the Bombay blood group, one of the rarest in the world. If Verma could do it, so can the government.
Finding blood and organ donors is always hard.
From 1990 to 2000, the number of patients on the transplant waiting list rose by 14 per cent per annum, while the increase in donors has averaged just 3 per cent a year.
But in most countries, in the 21st century, it isn’t this impossible.
Around the world, governments in countries from Spain to Singapore play an active role in connecting blood and organ donors with recipients, offering counselling and conducting awareness drives to attract more donors.
Since shortage of blood is never listed as a cause of death, there are no statistics available for how many lives could be saved. But it’s time the government of India used the funds, expertise and technology at its disposal to set up a national donor registry. View Larger Map
“It is an area where the government has a great role to play,” says Dr Debashish Gupta, head of Transfusion Medicine at the government’s National AIDS Control Organisation (NACO).
Dr Gupta should know. NACO submitted a plan two years ago, detailing how a cental database of blood donors would function. The plan it is still awaiting approval. The framework already exists: NACO regularly conducts blood donation drives and screens the blood to ensure it is safe.
So here is what we propose:
Regular donors from across the country could be compiled into a central database.
This resource could be made accessible only to public hospitals, trusts and non-governmental organisations like Red Cross and the Rotary Club, to minimise the risk of misuse.
“A national donor registry is a good idea. It would save lives,” says Dr Vanshree Singh, Director (Blood Bank) with the Indian Red Cross Society. “And NACO is the perfect agency for such a database.”
Those signing up to donate blood be offered incentives, like a free medical test for the family — and be referred to the database.
The database could be expanded through awareness campaigns and blood donation drives.
In emergencies, donors could be picked from the database and called upon.
Each regular donor could be given an ID card to entitle him to any amount of blood in case of emergency, anywhere in the country.
As an added incentive, the government could even throw in perks like free train travel or payment of health insurance premiums for a limited period.
A similar plan was mooted for organ donors four years ago, by then additional secretary and director-general (NACO) Dr S.Y. Quraishi, now an election commissioner.
“Our report had suggested a two-pronged approach to the problem of insufficient organs and the resultant black-market trade: Make illegal organ transplants punishable by life imprisonment; and empower the ORBO [Organ Retrieval and Banking Organisation] to maintain a database of all those waiting for organs — and real-time records of organs available and people who have signed up as donors,” says Dr Quraishi.
The ORBO — already in place at the All India Institute of Medical Sciences, but largely ineffective outside of Delhi — was to network with hospitals across the country through a nationwide chain of regional hubs.
These hubs would make families of deceased or brain-dead patients aware of their options and the importance of donating organs. When an organ became available, the hospital would log into the central database to ensure it was transplanted as soon as possible to avoid wastage.
To encourage more families to donate, the report even suggested that the government — through the ORBO — offer compensation to live donors, or the families of deceased.
This could include free health insurance and railway travel and compensation for loss of wages.
“More people may be willing to do the right thing if they get something in return,” says Quraishi.
People in need of organ transplants could register online for a token fee, ensuring that there was a paper trail and accountability. A vigilance wing could perform periodic checks on whether the organs had gone where they were supposed to go.
The report, tabled before the Health Ministry in 2005, has so far been ignored. Meanwhile, the need for organs has grown nearly five times faster than number of cadaver donors.
“Awareness is the key,” says Dr Gupta of NACO. “Eye donations jumped after the Aishwarya Rai ad campaign. But for something as essential as a kidney, there are no banners, no celebrities, no effort.”
Out of the Vermas’ New Delhi home, Rahul now operates a Facebook page too, creating an online community of support. “The youngest member of our network is four months old, our oldest is 80,” he says. “The online community reminds them that they are not alone in their struggle.”
At their home, where Rahul's second cellphone doubles as the official helpline number, calls come in from desperate families across the country.
“We are trying to expand our base to help these people,” says Tulika, “But we need help too. The government must step in.”
The Internet and IT are connecting people across continents in real time, but the government is still depending on bulky files, reams of paperwork — and sheer luck. People in need of blood are forced to use SMS and radio stations in emergencies; desperate job-seekers fill up cards manually at employment exchanges and then wait and hope someone will stumble upon them.
Use technology to connect people better. Use existing resources, like NACO, to set up a national database of blood and organ donors. Makes this database available only to government hospitals, trusts and NGOs, to minimise the risk of misuse.
Computerise all employment exchanges and digitise all data. Then link all that data virtually, so anyone logged in can search online in any region of the country.
Grant access to all government undertakings and all registered private companies, creating a virtual national employment exchange where a firm can search for specific skills in a specific district, state or countrywide.
(With inputs from Shubhi Vijay)