We, the Organ Transplants and Donors of India, kindly request our Health Minister, the Hon. Mr. JP Nadda, to take immediate action to support us and provide us with Financial Aid for our healthcare. The government’s role in spreading awareness about organ donation, and regulating a fair allotment through National Organ & Tissue Transplant Organisation (NOTTO) on Cloud, is indeed laudable. 

 The NOTTO Transplant Manual (2022; p.12) states it “plans to support donor families for funeral, and transplant patients for immunosuppressive drugs.” But it also adds that the procurement of the organ and the transplant is the recipient’s responsibility, and justifies the high cost by linking it to the quality of the treatment provided. This is grossly unfair to this group.

Because of the nature of the intervention, the community has to spend not only on the transplant but also on immunosuppressants, blood tests, regular checkups, and biopsies post-transplant to prevent further complications, causing continued mental and financial stress.

Aarti’s child was transplanted with a donor heart two years ago. Not only did she and her husband borrow Rs. 3,500,000/ for the transplant, but they have to spend Rs. 25,000/ on her medicines every month. Aarti is worried, “I have a son studying in Std. 12. I have to provide for his education too.”

As a person transplanted with a donor organ, I have personally experienced the challenges and barriers that arise due to limited access to funds. It is disheartening that neither insurances are willing to issue us medical policies, nor does our government provide for our healthcare. 

All transplants are leading active lives and contributing to the development of the country, yet we are left alone struggling for funds to survive after the transplant. 

Our collective experience has highlighted the urgent need for change.

The number of people suffering from last-stage chronic diseases is increasing; so is the need for organ transplants. Organ transplants have increased to 15,000 in a year (27% increase) in 2022 according to the statistics released during the Scientific Dialogue organized by NOTTO under the aegis of the Union Ministry of Health & Family Welfare on 19 Feb 2023.

This is the time to act, failing which organ donation and Transplants will  receive a setback.

The government is well aware of this situation, and its efforts to increase the number of organ donations on a war footing are appreciable. However, it must take robust steps to improve the Transplant scene holistically. 

Call for Action:

We request the Hon. Minister of Health and Family Welfare to take the following steps:

1. The government must honor its commitment and provide support to donor families for funeral costs and transplant patients for immunosuppressive drugs without delay, offering some relief to this beleaguered community.

2. Insurance companies arbitrarily reject applications for medical policies to organ Transplants/Living Donors in writing, stating: “Rejected because Heart/Kidney/liver/ Lung Transplanted,” describing them as “High-risk clients”. Insurances defy the revised IRDAI regulations (April 2024) to provide insurance to all, which is the right of every Indian citizen. The government must correct the anomaly soon, or they should revoke their licenses. 

3. We request the government to review its policy and change it to provide financial assistance in all aspects of the Transplant process for recipients, irrespective of their income. It’s a misconception that Transplants are a wealthy community. 

4. It should systematize the legal aspects of cadaver donation and the declaration of brain death across states, a point conceded by the Ministry in the NOTTO Transplant Manual (p.12).

5. The government must Honor Donor families and Living Donors nationally on India’s Organ Donation Day. 

By undertaking these measures, the Ministry of Health and Welfare will demonstrate its commitment to saving its citizens’ lives through organ transplantation.

It will make the right impact by announcing the requested actions on India’s Organ Donation Day, 3 August 2024.

Conclusion: 

I urge you all to sign the petition to make a significant impact on the lives of transplant recipients and donors.

Thank you.

Viney Kirpal, on behalf of Organ Transplant Recipients from across India.