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Patient Advocacy: Organ Donation Laws, possible changes.

In our endeavour to address long waiting lists, and get more patients on dialysis to achieve their transplant goals, we undertook a close study of the existing transplant laws. It was necessary to check if any tweaking in laws could add more dimensions to increase organ donation.

The meticulous introspective exercise showed us many ways to improve laws:

  1. Kids whose family had tested, should get priority on transplant lists. If there was a funds issue, some assistance to bridge gaps in funding through hospitals, Trusts and Government must be explored and made possible.
  2. Mothers on dialysis, with a kid who was special with some challenges, should also be helped with an early transplant.

To get some in-depth information, a special session was held during our 2nd Virtual Conference on 19th December 2021. Prominent speakers were given topics based on their work and experience.

Dr Vasanthi Ramesh, Director of NOTTO (National Organ and Tissue Transplant Organisation) spoke on the role of a patient body like KWF to bring about a Single Unified System in India for organ donation.

In a detailed presentation on One Nation One Allocation, Dr Ramesh explained through references to Clause 13C, THOT Rule 31; Clause 13D, THOT Rule 32, Rule 31, subrule 4 – Broad principles of organ allocation. The Law aimed for a single allocation system for the country. The actual implementation needs to be sought for by the patient body so we can create a single policy ensuring equal rights for all patients.

Dr Sanjay Aggarwal, AIIMS Delhi, talked about expanding the donor categories to bring more close relatives into the donor pool.
According to “The Transplantation of Human Organs (Amendment) Act 2011” a “near relative” includes parents, children, siblings, spouse, grandparents, and grandchildren as eligible for being a living donor. The process of approval is much simpler as the relationship is authenticated documentarily and the testing of the HLA (human leukocyte antigen tests) also becomes proof.

The law also permits donation because of “affection or attachment towards the recipient or for any other special reason”. The donor in such cases could be a distant relative or a friend.

The third option popular in recent years is a “swap transplant’, where an incompatible donor-recipient pair can swap with another incompatible pair. Such donations are closely screened for commercial motives.

According to Dr Agarwal, there is no controversy in the act. He suggested that the near relation list should be widened. The maternal and paternal relatives and in-laws should be included in the near relation list.

Dr Sanjeev Gulati, Fortis Hospitals, President, Indian Society of Nephrology, spoke on Organ Donation Laws, Limitations and Reforms needed.
India’s Human Organ Transplantation Act was enacted in1994, but our organ donation rate is a meager 0.01% while India sees highest road traffic accident rates where close to almost 500,000 deaths (read as organs) occur each year, yet the gap between availability and donated is increasing every year. In contrast, other countries like Croatia and Spain have organ donation rates close to 35%. Our research shows 200,000 new patients of chronic kidney disease are added to this pool each year. The 1994 Act needs reforms. He added with rising prevalence of diabetes, obesity, hypertension and with the breakdown of the joint family system, it is becoming hard to find organ donors.

Some aggressive thinking is needed to advocate changes under four headings:

  • Cadaveric donation, Opt-Out model : Every Indian citizen above 18 years, while getting a driving license can opt to donate – then every road accident death victim, who is brain dead automatically becomes a donor. This prevents family members from getting emotional and prevents organ donation, oblivious of donors wishes. Spain started an “opted- in”model, and many countries – France and Britain have followed and found improvement in conversion rates.
  • Clause in the law does not approve live donors with financial disparity. Some sort of incentivisation must be done to improve rates of transplants and such clauses must be removed.
  • Rewarded gift: fair to compensate donors for time spent and loss of income for leave during evaluation and surgery. This is not mentioned in the Act.
  • Regulated and paid unrelated donations. Iranian model gives organ recipients registers with an NGO for a fee. The fee is used to pay for donors and insurance for recipients.

We need to look at these options closely and move forward to bridge the gap between organs needed and availability.

Patient Advocacy for prioritizing kids for transplant:

For kids who are on dialysis, chances of waiting on transplant lists are very tough. Though there’s a separate list for kids, it is tough to create any priority. Dr Uma Ali took a case of parents who tested to donate, but due to mismatch in blood group, the kid, Kushi was on peritoneal dialysis. The parents were unable to manage costs, so they sold their property to manage hospitalization and treatment for peritonitis. Such a remarkable case was an eye-opener.

The plea was transplant laws should incorporate a clause that kids who had willing donors must get a top priority for deceased donor transplants.

To make this a strong case Dr Reeta Dar, KWF’s Advisor for Organ Donation interviewed the father. Dr Uma Ali made a strong case for such a change in Law through a video recording.

KWF Virtual Conference: Patient Interviews by Dr Reeta Dar on Wait time for transplants.

KWF Virtual Conference:

Dr Uma Ali talks about Organ Transplant a Priority for kids

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