Obstacles to Organ Donation in India: Q&A With Anika Parashar, Co-founder of ORGAN India

Organ donation gives people a second chance to live. A single deceased donor can save up to nine lives with organ transplantation and help over 50 patients with tissue donation. However, the status of organ donation is dismal in India, and a lot of work has to be done in this field. The life-saving practice has been hampered in the country by lack of awareness, myth and misinformation.  

Anika Parashar is a Trustee of Parashar Foundation, who initiated The Organ Receiving & Giving Awareness Network (ORGAN) India. ORGAN India was launched to address the dismal state of deceased organ donation in India in March 2013. To fulfill the mission, the organization has launched several initiatives across the country in association with the government, private hospitals, and non-profit organizations.

In an exclusive interview with Medindia, Ms. Parashar talks about obstacles to organ donation in India and ORGAN India's approach to increasing the number of donor pledges in the country. Agreeing with the comment of Prime Minister Narendra Modi on Tamil Nadu's efforts to improve organ donation, Ms. Parashar said that the state had shown the way for the future of organ transplant in the country. Modi recently said the state has done "extremely well" in this field. Excerpts from the interview:

1. Could you tell us briefly about your life experience that has motivated you to begin the organ donation awareness initiative in India?

In 2011, my mother Kirti Parashar was told that there was nothing else the doctors could do about her heart condition and that she would need a life-saving heart transplant within 18 months. We went around all of Delhi figuring out what to do. There was no one really to guide us or to tell us what the possibilities were. Also, the organ donation rate in Delhi was and is still dismal, and there was no point waiting around for a donor. Few donors plus a lack of an allocation system left us with no choices. Finally, we figured out that Chennai was the best place to go, and people are more aware about organ donation there and Tamil Nadu has a proper government run organ allocation network.

As a result of the problems we faced, we decided to start ORGAN (Organ Receiving & Giving Awareness Network) India, as an initiative of our family foundation – the Parashar Foundation. The aim is two-fold; to raise awareness across India, especially in the North, and to help people facing the same problems as us to find their way around a transplant.

2. Is India in a dire need of organ donation? What is the current rate of organ donation in India?

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India has what you can call a blind spot when it comes to organ donation. The possibilities are huge, but nothing is done because the organs are not retrieved from thousands of brain dead patients and allocated in a timely fashion to critically ill patients. While it's tough to say exactly what the figures are (because no one has really done a proper census), it is estimated that there are almost half a million people who are suffering from organ failure, and less than 3% of those will receive a life-saving organ.

In the last two years, the deceased organ donation rate has doubled from 196 donors in 2012 or 0.16 per million population (pmp), to 411 donors in 2014 or 0.34 pmp. A total of 1150 organs were retrieved from 411 multi-organ donors in 2014 which resulted in an increase in the national organ donation rate to 0.34 per million population. While that is positive news, we are still lagging behind countries like the US, which has an organ donation rate of 26 pmp, and Spain which has an organ donation rate of 35 pmp.

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3. Why is India so far behind in organ donation compared to Spain and the United States?

India is far behind because of many reasons. Firstly, here has been no ad-campaign to sensitize the public in India about organ donation. In the past, eye donation campaigns have been quite successful. Unfortunately, no such effort has been made for organ donation. Secondly, people run far from the phrase ‘organ donation' because it has been traditionally associated with organ rackets. I would like to clarify here that those exist only for living donations and not deceased donations. However, the negative connotations persist. Thirdly, there are religious issues, but more than that it is just that people don't know about organ donation. They are myths associated with what will happen with the organs that are donated, general distrust of the hospitals and doctors, and no awareness to alleviate peoples' fears.

On the other side, many hospitals and medical professional themselves are unaware of the concept of brain death declaration and organ donation. Add to that, the allocation and delivery system requires a lot of coordination and work, and that has still not happened in many parts of India, especially the North.

4. Tell us about initiatives of ORGAN India. How are they improving organ donation rate in India?

People who need to know about organ donation can be divided into two categories: Those who need to be aware of the concept of organ donation, and those who are suffering from organ failure and have no idea what to do about it.

ORGAN India is the first stop on both journeys.

We have helplines dedicated to helping these people figure out where they can best hope to get a transplant, clear their doubts on the law, give them information, and we have a database of transplant hospitals, doctors and transplant coordinators that we send them according to their needs. We get 10-15 calls a day from people all over the country asking about what they should do, where they should go and what the situation is in the cities around them. We guide them to the correct place, help them get clarity and go as far as calling people on their behalf so that they can sort out their plan of action.

Awareness activities include talks at various platforms by the head of ORGAN India, testimonial films, short promotional films, online advertising, a robust website that answers all your questions, a blog on organ donation and transplantation and dispersal of donor cards across India. We send all our material to far flung areas of India, so that even if we can't physically go there, we can still send all our movies, brochures, posters, cards, etc. Our donor database is routinely forwarded to the National Organ & Tissue Transplant Organization.

5. Could you share with us some significant achievements of ORGAN India?

Listed below is a list of our achievements so far and some of the activities we are considering for the next year

Research Report On Organ Donation: Carried out comprehensive research and collate data on Transplants in Delhi/NCR after interviewing respondents in all the major hospitals in the area. The report analyzes the successes, failures and glitches in the current system and provides suggestions for future plans. It is the first of its kind in North India. The report was released in July 2014 at the Habitat Center, in the presence of Additional DGHS, Dr. Dharamshaktu, President Fortis Healthcare, Mr. Daljit Singh, Dr. DS Rana, Chairman, Gangaram Hospital, etc. There was a concert by Ms. Sonam Kalra at the event. 

Films On Organ Donation: We have produced several short films to be screened at various awareness sessions and to be put online. These films have been well received and have been shared with the government bodies, NGO's, hospitals free of charge to promote organ donation. Some links are given below

We are setting up a section on our website called the Transplant Guide, whereby anyone across India who needs a transplant or needs to see a doctor or go to another city, will have all the information available to them through our website. This is partially complete. This will not only include the hospitals, doctors, and transplant coordinators (along with their contact details), but also accommodation, taxis, chemists, medical suppliers, labs, restaurants, ambulances services, etc. all near the hospital they plan to visit. We are in the process of collecting this information. Most of the calls we get are from people needing guidance on where to go and what to do. We plan to make our website the home for all such people across India.

On the Ground Awareness Drives: Drive across Delhi and the NCR at colleges, clubs, corporate houses, RWA's, housing societies and schools to make people aware of organ donation and encourage them to pledge. Some of the places we have visited for presentations are Mercer, Deloitte, Yatra, PWC, Aegon Religare, Select Citywalk, Egon Zehnder to name a few.

Social Media Campaigns: We use social media platforms such as Facebook, Twitter, Google Ads to effectively launch regular campaigns to create awareness on organ donation. We have a very active Facebook page.

ORGAN India has been accepted into the Google Ad Grants program and has been sanctioned $10,000 worth of Google Adwords to spread awareness of its activities on the internet. The AdWords grant will help us find additional support for our non-profit.

Our Online Pledging system has been very successful. We have a robust pledging facility and receive at least 20 sign ups every day. Within two weeks, we courier a donor card and a brochure to everyone who signs up with us. All the information of the pledges goes weekly to the National Tissue & Transplantation Organization, the apex body in India.

Our website is the hub of all the activity. Through the website and Helplines we answer queries from people, disseminate information, info-graphics, and other material relevant to organ donation.

Engagement with Opinion Leaders & Celebrities: Engaging celebrities, sportspersons, actors, singers, musicians, politicians and others, especially those who are seen as role models, to create awareness and spread the message to all sections of the population, who will be encouraged to sign up as donors. We have already short clips with Shri Javed Akhtar, Shabana Azmi and Subhash Ghai.

ORGAN India ran in the Airtel Delhi Half Marathon on Sunday the 23rd of November 2014 to raise awareness on organ donation and funds for our continuing efforts. Mamta & Arun Jain (who had donated their son's organs) participated in our run along with 15 others. We are proud, out of the 95 NGO's participating in the marathon, Mamta & Arun Jain's personal story on organ donation was one of the five stories that ADHM and Star TV chose to highlight during the marathon. The story was telecast on 23rd November, on Star Sports during the live telecast of the marathon between 6-10 am.

ORGAN India recently tied up with Saroj Super Specialty Hospital and the MOHAN Foundation to launch CORD (Campaign On Organ Donation).

As part of the campaign, we will go to schools, offices, clubs, RWA's and other events set up by the hospital, and start a campaign to make organ donation a part of the school curriculum.

6. What are the future short term and long term goals of your organization?

The short term goal of the organization is to become the first port of call for anyone needed information on organ donation and transplantation. To reach out to those who ask for our help in any way possible and to continue our awareness sessions and online and offline initiatives. We need to gather funds to be able to do that, and a significant amount of our time is spent on fundraising. We are having an Anup Jalota Live Concert at FICCI on the 12th of December to raise awareness about organ donation. The Chief Guest will be the Director General of Health Services, Dr. (Prof.) Jagdish Prasad. Shri Anup Jalota's wife Medha Jalota passed away a year ago after her second heart transplant in the US. Medha ji was Mrs. Kirti Parashar's sister. Anupji is the Chief Patron of the Parashar Foundation and is at the forefront of promoting awareness on organ donation

Our long-term goal is to release an ad campaign India-wide that we have already created with the ad firm Wieden & Kennedy, rope in lots of celebrities into the promotion of organ donation. We also hope to make IEC material for the government. The ultimate aim is to bring organ donation into the public consciousness and make it a routine concept that it is in other Western countries.

7. Even Prime Minister Narendra Modi is lauding the efforts of Chennai in organ donation. What is this Chennai model for organ donation and what should other cities learn from the model?

Tamil Nadu is the leader in cadaver organ transplantation in the country, thanks to the awareness generation campaigns mounted to spread the message of organ donation over the past decade and the efforts of the Tamil Nadu Government in setting the example of a successful public-private partnership program on organ donation.

The Government of Tamil Nadu also passed several government orders to promote organ donation which if followed by others, will lead the way to many more deceased donations across other states. These are:

• Mandatory declaration of brain deaths
• Procedure to be adopted for cadaver transplant
• Criteria for non-transplant centers to retrieve organs and send them to Transplant Centers
• Postmortem procedures and a counseling center for all registered hospitals
• Organs obtained from hospitals are distributed to patients via common waiting list registered in Tamil Nadu Network for Organ Sharing

8. Finally, what are your suggestions for policy makers and the government in India to improve organ donation rate?

Our suggestions to policy makers are the following:

• To without any further ado release a national-wide call to action to pledge organs. They need to tie up with NGO's and both Government and private hospitals all across India to push the concept of organ donation in all levels of society.
• To make pledging of organs an option on all Government Id cards like drivers license, Aadhaar cards, PAN cards, etc. and provide promotional material at all these centers.
• To rope in celebrities and opinion makers to promote organ donation.
• Make the declaration of brain death mandatory in all states.
• To reverse the lack of initiative taken by government hospitals, which have the largest pool of the brain-dead.

References:

1. www.organindia.org

2. http://www.organindia.org/stories-of-hope-transplant-recipients/

3. https://youtu.be/l5jpsMjOHd4

Source-Medindia