Lalitha Raghuram

Before 1997, there had been only one documented case of successful organ donation in India. Lalitha Raghuram has paved the way for a new system that manages organ donation in India and delivers them to the last stage organ failure patients most in need. Over the last 13 years, she has created a chain of responsibility in which trained doctors, nurses, transplant coordinators, counselors and social workers play clearly defined, but complementary roles to enable organ transplant in a safe and sensitive way.

Lalitha has pioneered the system for organ transplant in India both by building the enabling policy framework for organ donation, transplant procedures and accreditation of hospitals, and by equipping medical and non-medical professionals to ensure organs are transplanted in a timely and sensitive manner.

Lalitha’s role as a catalyst has brought together public and private actors, connecting cadaver donors to wait-listed patients, enabling hospitals, families, medical staff and the public at large to take responsibility for organ donation. She is building a culture of organ donation in India by engaging mavens- religious leaders and celebrities, in creative ways. To identify potential donors and counsel their families to encourage them to donate organs, she has also created a dedicated profession of ‘transplant coordinators’ in accredited transplant hospitals. Lalitha’s most valuable contribution lies in the way she has streamlined the process of organ transplant in accredited hospitals.

There are now over 320 trained transplant coordinators in 250 accredited hospitals. By systematizing the entire chain, Lalitha has managed to maintain an 80 per cent success rate in convincing families to donate, and has successfully coordinated 958 full body organ donations since 2002.

Organs can be donated only in a very specific context; in the eventuality of brain death. Brain death is a condition where oxygen has been cut off to the brain for a period of three minutes or more and is the only circumstance in which a person can be considered an organ donor. Brain deaths account for 3-4% of all deaths: 60% of which are caused due to road accidents and the remaining 40% are due to strokes and brain tumors.

Despite the high fatality in road accidents and strokes in India (there were a total of 142,485 deaths due to road traffic accidents alone in 2013), only a handful are successfully transplanted. There are an estimated 150,000 patients in critical condition that require life-saving organ transplants, of which 5,000 receive donated organs. Amongst these 5,000 donated organs, currently only about 200 are cadaver donations. Often a single patient waits for a period of 3-4 years for an organ in vain. In fact, prior to 1997, there had been only one documented case of successful organ donation in India.

Organ donations have been low in India due to several reasons. First, there is an acute lack of awareness among the public, patients and physicians on the conditions under which organ donation is possible. As the issue is often not even discussed under the appropriate context, few are encouraged to consider organ donation as an option. Second, very few hospitals in India are qualified for organ extraction and even less have the skills, facilities and equipment to carry out transplants.

Few medical professionals and staff themselves understand the process of declaring brain death and the conditions in which it occurs. The lack of standards for declaration of brain death, organ donation and transplant procedures also prevent medical professionals from confidently declaring brain deaths and undertaking transplants. There is also a glaring lack of bedside manner from the medical community when communicating about brain death to families of victims, thereby making the conversation about organ donation inappropriate or uncomfortable.

Further, organ failure is often not detected until the last irreversible stage when transplants are the only remaining means of treatment. While there are a large number of potential donors because of cadaver deaths, there is no system to match them to patients waitlisted for organs quickly.

Lalitha is building the system for organ donation in India by firstly building a culture of organ donation, secondly introducing an enabling legal framework and finally equipping medical professionals with the knowledge and skills to handle organ transplants.

To build the culture of organ donation among members of the public to pledge and donate their organs, Lalitha launched campaigns that spread awareness on situations in which organ donation was possible and the number of lives that can be saved through effective and timely harvesting of organs. She has undertaken workshops and talks in schools, colleges, and corporate offices across India targeting people from a spectrum of socio-economic backgrounds. To recognize donors and their families, Lalitha began attending funeral services of organ donors and speaking to family members, friends and relatives of the nobility and value of organ donation. This in turn encouraged more people to donate their organs. Lalitha also identifies religious leaders and celebrities, those held with the highest regard in society, to endorse organ donation. More particularly, she has capitalized on India’s deep religious sentiment, by identifying verses from sacred texts that sanction saving lives and communicated this message through respected religious leaders.

To systematize the growing number of donors, Lalitha introduced the first organ donor card in India. This was written in various local languages allowing pledged organ donors to make people aware of their donations. Lalitha has also collaborated with hospitals and medical professionals to inform her organization, MOHAN foundation, whenever a patient was referred for an organ transplant. This system helps to build and manage state-wise databases of waitlisted patients. These lists have now been taken over by the state governments, moderated by the MOHAN foundation.

To influence policy on a larger level, Lalitha played a key role in introducing the Transplant Act of Human Organs 1994 that codified standards for organ donation and transplant procedures. It is now policy in India that brain death needs to be confirmed by a minimum of four doctors, independent of the treating physician for a patient to be declared brain dead. She also established an accreditation system under which only hospitals equipped with the required infrastructure, skills and resources to conduct transplants, were licensed to do so.

Recognizing the need for better coordination, Lalitha created a dedicated ‘transplant coordinator’ profession in accredited transplant hospitals to recognize potential donors and encourage them and their families to donate organs. Building on this, Lalitha has allocated clear roles and responsibilities to different medical and non-medical professionals to ensure organs are transplanted in a safe and sensitive manner. For example, doctors are trained to understand and follow legal outlines for declaring brain death and informing the nurses. Nurses act as crucial communication links between the families of patients and the hospital staff, including the transplant coordinator. The transplant coordinator is trained to liaise between the hospitals with patients waiting for a donated organ and the families of declared brain death victims. Finally, social workers and counselors trained through the MOHAN Foundation are brought in to guide the family through grief counseling procedures and rehabilitation of organ recipients. Each of these stakeholders are trained for differing periods-one month, three months, six months, through training modules created by Lalitha.

Lalitha believes that with the increase in pledged legal organ donation the costs associated with the transplant will reduce by virtue of there being a higher supply. As a result, she hopes the desperation for illegal organs in the black market and the underground trade in organs will be reduced.

After suffering a personal tragedy that resulted in the death of her son in January 2004, Lalitha recognized the glaring need for witnesses of road accidents to understand how to deal with victims and quickly mobilise them to react to road accidents. She initiated a national programme to address this. The programme aims to educate members of the public to react to road crises and engage with the system to quickly facilitate the best possible care for the victim. In the worst possible case, where the victim succumbs to brain death, it is at least possible to salvage the organs for donation. The programme is named in memory of her son.

Lalitha has been trained internationally by leading medical universities including Kings College London. She began her professional career with L.V. Prasad Eye Foundation.

Working in the field of eye donation, Lalitha begun to identify mavens in the field and convince them to champion the cause of eye donation. Her campaign with Aishwarya Rai (a leading Indian filmstar), went viral on television causing thousands of people to sign up and pledge their eyes. Soon after, a national newspaper covered the campaign leading to 55,000 pledges immediately after the campaign. Lalitha was key in vetting all the existing eye banks and pushing for an accreditation procedure to ensure that all the eye banks listed in India were functional and efficient. As a result, many of the leading medical professionals in the field recognized Lalitha as a leader in the field.

After successfully working in the Eye Bank Association, Lalitha grew restless and approached her mentors looking for an opportunity to do more. She was introduced to the idea behind MOHAN Foundation, a nascent organization that had just begun in Chennai at the time on increasing awareness about organ donation. Lalitha’s previous work earned her the credit and recognition she required to manage the Hyderabad chapter of the MOHAN foundation.

Her first case involved a woman killed in a road traffic accident. Lalitha appealed to the woman’s family urging them to consider organ donation, explaining that the deceased woman’s organs would go on to help nine other patients. After much deliberation the family agreed. Lalitha took the woman’s body to the hospital and handed her over to the transplant doctors. After completing the surgery, the doctors handed the patient’s body back to the family, stark naked and several hours late for the funeral service. Lalitha quickly understood that hospitals and trained medical professionals did not have the experience or sensitivity to counsel families of the deceased or treat departed donors as little more than a resource. She began to train doctors and medical professionals to understand the circumstances in which a person can become a donor and on methods of grievance counseling for families of the deceased.

Later in 2004, the untimely and tragic death of Lalitha’s son in a grave road traffic accident led her to become even more deeply and personally involved in the cause of organ donation. Despite members of the wider medical community telling Lalitha that they would understand if she did not, Lalitha donated all nine of her son’s eligible organs. She and her husband continue to work to increase awareness of road traffic accident response systems.