Early last year, rumours flew that Apple CEO Steve Jobs was seriously ill. Not until April did Jobs finally confirm that he had undergone a liver transplant. Emphasizing the importance of organ donation, Jobs publicly thanked the donor (a person in the mid-20s who died in a car crash) and encouraged others to donate their organs. Apple's CEO indeed owed his extended life to the organ transplant. Job's message would be aptly valid in India.
"Annually, more than 100,000 Indians are newly-diagnosed with End Stage Renal Disease and of those who wish to have an organ transplant, many would require to be wait-listed for an organ. Many of them could live for many years if donor kidneys were available. Barely 3000 receive a donor kidney and only a small percentage of these are cadaver organs. In India only around 1400 have received cadaver organs in the last nine years. There is a critical shortage of available organs for transplant surgery", says Dr. Alan Almeida.
Indians are reluctant to accept brain-death as the end of the road since they believe that till the heart beats, hope still beats. This is not true, however, since brain-dead patients suffer irreversible loss of all brain function. Such people are clinically as well as legally dead.
Globally, around 50,000 organ transplants are performed annually. Doctors worldwide have accepted organ transplant as the best, and often the only, treatment for many fatal diseases such as End Stage Renal Disease (kidney failure). Transplantation is now considered established therapy by the WHO.
In 1994, Govt of India introduced Human Organ Transplantation Act 1994. To combat the kidney racket, the Act ruled that only a near relative (father, mother, brother, sister, son, daughter and spouse) can be a living donor without the government's pretransplant authorisation and legalised the definition of 'brain death' to encourage cadaver organ transplants.
This concept has not taken firm root in India, though, due to low awareness and multiplicity of myths. For instance, believers in reincarnation fear being born without the donated organs in their next life! Experts say celebrity endorsements would be best to dispel myths and create national awareness on donating organs.
Some down-to-earth facts to bust common myths
Myth 1: If ICU doctors know I'm an organ donor, they won't work hard to save me.
Fact: If you are admitted in hospital sick or injured, the first priority is to save your life. The doctors will do the utmost to save your life. Organ donation can only be considered after brain-death occurs. Moreover, the medical team treating you is distinct from the transplant team.
Myth 2: What if I recover from brain-death?
Fact: Although it's a popular scenario in the movies, in real life people don't wiggle a toe after brain death occurs. The standards to determine a person is brain dead are very strict and people who have agreed to organ donation are given additional tests to be doubly certain they are truly dead. The tests have to be repeated after an interval of at least 6 hours and the brain death has to be certified by 4 medical practitioners.
Myth 3: When awaiting transplant, financial or celebrity status is as important as medical status.
Fact: What really count is the severity of illness, time spent on the waiting list, blood type and other important medical information. The organ allocation system is blind to wealth or social status. Factors such as race, gender, age, income and celebrity status are never considered when determining organ recipients.
Myth 4: Organ and tissue donation mutilates the body.
Fact: The donor's body is clothed for cremation, so there are no visible signs of donation. After eye donation, an artificial eye is inserted, the eyelids are closed, and no one can notice any difference. After bone donation, a rod is inserted where the bone has been removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back. Again, because the donor is clothed, nothing is noticeable.
Myth 5: Religion bars organ donation.
Fact: Most religious beliefs - including Hinduism, Catholicism, Protestantism, Judaism, and Islam - permit organ donation or leave it to the individual's discretion. All religions in India consider organ donation as an act of charity and support it. If you're unsure of your faith's position, clarify this from a member of your clergy.
Myth 6: As a Hindu, if I donate organs, I will be born without them in my next birth.
Fact: This is not true. When a Hindu is cremated, the entire body is consigned to flames and destroyed by fire. The only element not destroyed is the soul. The physical body does not survive death anyway, so the organs hold no relevance in rebirth as they are destructible. It is the everlasting soul that is reborn.
Myth 7: The donor's family is charged for donating organs.
Fact: A donor's family is never charged. If a family believes it has been billed incorrectly, it should immediately contact and rectify matters with local organ procurement organization.
Myth 8: Anyone can be an organ donor.
Fact: Surgeons harvest organs from patients with strong and still 'beating hearts'. Organs from donors whose heart has stopped (no-heart beating) may not be suitable for transplantation. Therefore, only 1% of prospective donors finally donate vital organs. Donation of eyes, bone and skin is possible from non-heart beating donors.
Myth 9: If a prospective donor has health problems, nobody would want the organs.
Fact: Few medical conditions automatically disqualify one from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, while other organs are fine. At the time of death, only medical professionals can determine whether a prospective donor's organs are suitable for transplantation.
Some diseases though, including active cancer, active HIV or active infection, rule out donation. For a person with a history of hepatitis, more information would be required at the time of death. Persons with Hepatitis C may still donate organs to a patient who also has Hepatitis C.
Myth 10: Old people cannot donate organs.
Fact: There's no defined cut-off age. Organs have been successfully transplanted from donors in their 70s and 80s! However, in a donor above the age of 70 years, the matter needs to be reviewed by the authorities concerned before organ donation is permitted. At the time of death, only the doctors can decide whether the organs are suitable for transplantation.
Myth 11: Only the heart, liver and kidneys can be donated.
Fact: Other organs such as the pancreas, lungs, small and large intestines, and the stomach can also be transplanted. Moreover, tissues such as skin, bone, heart valves and tendons can be donated too.
Myth 12: Having "organ donor" noted on the driver's licence or carrying a donor card is all that's required to become a donor. I don't need to tell my family I want to be a donor because it is written in my will.
Fact: Signed donor card and a driver's licence with an "organ donor" statement are an expression of your desire to be a donor. Organ donation is usually discussed with family members prior to the donation. To ensure your family understands and respects your wishes, it's important that you tell them about your decision to donate Life. By the time your will is read, it will be too late to recover your organs. Informing your family in advance is the best way to ensure your wishes are carried out.
(The author is Nephrologist, P. D. Hinduja National Hospital)