Want law changed for unrelated live donor transplants! Law should support life!

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 2 lakh die of kidney disease every year in India!

The Human organ Transplantation law made in 1994 has to be made more relevant to today!

Kidney failures are on the rise and the law does not help make things easier. In India only blood relatives can donate organs to their loved ones. Which is not possible always as many forms of kidney diseases run in families or there are other diseases like BP or Diabetes or age which makes family members ineligible. Families are also now much smaller! And trying to include a few more relatives like uncles and aunts or cousins will also not provide any relief and increase the supply. It will be just a cosmetic change. There is an amendment being proposed to the law on these lines but I don't think the law makers have understood the gravity of the situation! Cousins and aunts did not know this law restriction and they did not come forward earlier also and some of the factors of age, disease debars them also as they carry the same genes! 

The problem is now looming large and growing. If this doesn’t move you, nothing will!

  • 17% of Indians have some form of chronic kidney disease.
  • 2,00,000 new patients need dialysis treatment every year in India.
  • Statistics suggest that there should be almost 20,00,000 Indians on dialysis as of today.
  • There are  60 million people with diabetes in India.
    At least 30% of diabetics will develop chronic kidney disease because of diabetes. This disease is only going to grow...
  • There are 0.4 dialysis centers per million population in India.
  • Only 4,000 kidney transplants are performed every year in India legally. So many have to move out of the country or get it done at B Grade hospitals quietly endangering both the donor and the recipient.
  • Some people who are willing to donate but the law and the paperwork makes it very hard for them. There is lack of education on donating while one is alive. So fear and lack of knowledge holds people back. 

 As per Dr Sanjay Kumar Agarwal, head of the nephrology department at AIIMS, CKD is more common in India than strokes and almost as common as diabetes, but the treatment costs 15 times more. Dr R P Mathur, head of the renal transplant services at ILBS, said, "There is need of around 1,75,000 kidneys for transplantation every year." But only a few thousands happen legally!!!!

The severe organ shortage has generated desperation among people awaiting transplantation.

Cadaver kidneys (of those dead or brain dead) are much lesser, also not as successful as live donor kidneys. A number of countries have a system of presumed consent which means that unless the deceased has expressed a wish in life not to be an organ donor then consent will be assumed. This approach also has its pros and cons. Organ donation in our country is being promoted but we are lagging far behind

Even the brain dead, if incentivised will be ready to offer the organs more readily! 

Dialysis is no solution; it is a slow death of a person and his family. It is one of the options to add years to one's life and if certain factors do not permit a transplant, the only option. In the long term, it costs more than a transplant and reduces quality of life drastically making it hard for the person to get back to normal routine and earn. So opening more dialysis centers is also not the real solution. It drains the person and the family. There is so much misery in this. Statistics says that it adds only 5 more years to a person on an average. There are exceptions, of course! 

Also chances of the transplanted kidney lasting longer are reduced if one stays on dialysis for a longer period. Still the wait continues and dialysis centres keep mushrooming.

And while live donor kidney donation is considered safe, it has an illegal stamp to it. A person can live on one kidney and lead a healthy life, says medical research. God has given us two kidneys but in our lives we need just one. 

Now if there is a person who is willing to donate his kidney but in return wants some favor or money from the recipient, the entire transaction could be legalised. And since the Dr and Police do check for any coercion, why should all such unrelated transplants be given the name of illegal trade? If the donor is poor, why is he/she presumed to be acting under coercion?

Coercion needs to be redefined! As per some figures by AIIMS, in 2015, 75% of donors are women and 79% of recipients are men. Why is a wife not tested for coercion? She may not voice it but may have little choice but to give the kidney even if she does not really want to?

A son or daughter under moral pressure may also be giving it unwillingly. But here the question of coercion is not raised. Very often amongst related donors also there is an understanding of giving some property or some monies. But that is not called illegal trade because there is a relation that can be established. As though, relatives do not fight, go to courts?

We cannot make family members donate if they are unwilling and the law makes you ineligible for a transplant from another if there is a person who matches your blood group but unwilling to donate! How justified is that? Shall we use force or coerce that family member? Make the law relevant as per changing times please.

We do donate blood; that is also a part of our body. There are blood donation camps to facilitate. We buy blood from blood banks in case of need. So why is another part of the body looked at with a different eye? Please facilitate, create systems.

The constitution imparts a right to live to all. Then why are we not allowed to live? God gifted us this disease. But if medical science is able to solve this problem, why are these laws barring us to live?

The best example of kidney transplant vs dialysis :

Sushma Swaraj ji was transplanted right after she was detected with Kidney Failure and within 2 months she was back at handling external affairs Ministry. And it was an unrelated donor! And the paperwork was quick allowing her to come back to serve the country with fervour, commitment and energy! We need this privilege for all as life is precious to all.... the need for speed in paperwork, removing fear from the hearts of possible donors and promoting organ donation including live donation.

There just needs to be openness to the issue and not see anything relating to the poorer sections to be seen with only one lens...i.e.. exploitation! Look at it from the betterment sense and ensure policies to make it better for them too if they come forward.

Can the country do something for these rising lot of kidney patients who could live if the law took a more lenient view? Can the DGHS, the Ministry of Health & family welfare, Govt of India, the various DGHS of various States, the NOTTO and all put together find a solution to this devastating disease?

There is a black market for kidneys that exists despite prohibitory laws. Regulated, legal unrelated donation is likely to improve safety for both donors and recipients. Currently donor gets nothing, is not counselled on how to better his living standards and use the compensation sensibly. Study the results of Iran and Singapore after they took a lenient view on unrelated transplants and let's benefit from the same! Taking a high moralistic ground that it will promote organ trade and the poor will be exploited is easy to take but not prudent or relevant in today's real scenario!

Kidney failures are increasing! Cadaver organs are less, wait too long, success lesser than live donor. If Singapore, Iran, Turkey, etc changed the living donor unrelated transplant laws, so can we!

Please review this law this Parliament session and give so many lakhs a hope to live! Urge the health ministry to take this up on urgent basis! And all the learned MPs, MLAs, doctors to review the situation and support this change of law! 

The new artificial kidney is still a distant dream and needs funding. If you know the kidney disease closely, you will know what it entails and the havoc it plays in a family, ruining the entire family, draining them of money and seeing the loved one go down in health after each dialysis! Life expectancy on dialysis is 5 years on an average. And it costs a fortune! If God has given an extra kidney to all, let mankind help each other and not make laws that intervene with the law of nature!

The recent Kerala High court judgement is landmark and should be the way forward for us. Let us not wait for good judges to do this sparingly! Change the law! Here is the link to that judgement:

http://www.livelaw.in/kerala-hc-personally-questions-organ-donor-ascertain-genuineness-offer-permits-organ-transplant-read-judgment/#.WTpGOBgzLyc.whatsappA

 



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