Professional Documents
Culture Documents
Document Ngo - Jeevandeep
Document Ngo - Jeevandeep
https://www.dpcedcenter.org/quality-of-life/employment/
https://blogs.bcm.edu/2018/01/19/barriers-employment-dialysis-patients/
https://www.researchgate.net/publication/
5888283_Access_to_Health_Care_in_Contexts_of_Livelihood_Insecurity_A_Framework_for_Analysis_a
nd_Action
https://www.mohanfoundation.org/organ-failure.asp
https://dghs.gov.in/content/1353_3_NationalOrganTransplantProgramme.aspx#:~:text=Transplantation
%20of%20Human%20Organs%20Act,have%20their%20own%20similar%20laws.
https://www.donatelife.org.in/
https://journals.lww.com/transplantjournal/fulltext/2021/08000/
on_the_way_to_self_sufficiency__improving_deceased.1.aspx#:~:text=To%20increase%20deceased
%20donor%20donation,intensive%20care%20unit%20(ICU).
https://www.organindia.org/ngos-in-organ-donation/
http://www.kidneywarriorsfoundation.org.dream.website/about-us/?
_ga=2.52446440.1569193953.1673882614-
742561565.1673882613&_gl=1*dsxfgn*_ga*NzQyNTYxNTY1LjE2NzM4ODI2MTM.*_ga_TKXTMZ4DNK*
MTY3Mzg4MjYxMy4xLjEuMTY3Mzg4MjY0MC4wLjAuMA
https://www.davita.com/education/ckd-life/employment/keeping-your-job-when-you-have-chronic-
kidney-disease
https://triomph.org.in/about/atmanirbhar/
https://www.amjtransplant.org/article/S1600-6135(22)08703-2/fulltext
https://www.thehindu.com/news/national/karnataka/free-organ-transplant-scheme-karnataka-sast-
jeevasarthakathe/article65671978.ece
https://www.odt.nhs.uk/deceased-donation/best-practice-guidance/donor-identification-and-referral/
https://www.readcube.com/articles/10.2139%2Fssrn.3590916
https://sites.ndtv.com/moretogive/indias-organ-transplant-law-requires-better-implementation-as-
some-recommendations-remain-unimplemented-2177/
https://academic.oup.com/bja/article/108/suppl_1/i48/237865
https://sites.ndtv.com/moretogive/organ-donation-what-other-countries-are-doing-1297/
https://www.linkedin.com/pulse/transplantation-human-organs-act-1994-analysis-apurva-agarwal/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8128443/
http://www.ectrx.org/detail/supplement/2020/18/1/2/31/0
https://www.medindia.net/news/healthinfocus/presumed-consent-will-it-work-in-india-196894-
1.htm#:~:text=Presumed%20consent%20or%20opt%2Dout,death%20identification%2C%20certification
%20and%20maintenance
https://sites.ndtv.com/moretogive/a-case-for-presumed-consent-for-harvesting-of-organs-1760/
Organ failure occurs when an organ loses its capacity to operate normally and needs
outside assistance. Majorly can be seen as
Background of organ failure: If your kidneys have completely stopped functioning, a kidney
transplant may be an option. End-stage renal disease (ESRD) or end-stage kidney disease is
the term used to describe this ailment (ESKD). If you get to this point, your doctor will probably
suggest dialysis.
You can arrange a scheduled donation if your blood and tissues match those of a family
member. Cadaver donors are another name for deceased donors. These are individuals who
have passed away, frequently from an accident rather than a condition. The decision to give
one's organs and tissues was made by either the donor or their family. You will undergo blood
tests as part of your evaluation for a transplant to identify your human leukocyte antigen (HLA)
level and blood type (A, B, AB, or O) (HLA).
Your white blood cells have a surface covered in antigens called HLA. Your body's
immunological response is brought on by antigens. Your body is more likely not to reject the
kidney if your HLA type matches that of the donor. If your blood develops antibodies in reaction
to the donor's blood, the transplant cannot be performed.
When the heart is unable to adequately pump blood to the body, heart failure results. All of the body's
major processes break down when there is insufficient blood flow.
In a heart transplant, a damaged heart is removed and replaced with a donor heart by a surgeon. A
mechanical pump keeps the body's blood flowing as the surgeon removes the sick heart and swaps it
out for a healthy heart from a recently dead donor.
The heart is wired up to temporary heartbeat controls and connected to the major blood
vessels by the surgeon. The process takes a long time.
Thus, India needs between 25 and 30 thousand liver transplants each year, but only
approximately 1 500 are actually carried out. Similar to this, over 50000 people experience heart
failure each year, yet only 10 to 15 heart transplants are carried out in India annually.
Approximately 25000 Cornea transplants are performed annually despite a need of 1 lakh.
In many Indian states, transplants of organs are performed regardless of gender, caste, or
religious identity, and organ donations are increasingly saving lives. We should be grateful for
these acts of compassion and solidarity. However, this uplifting story contains a spoiler.
This life-saving medical treatment improvement is not helping a lot of organ failure sufferers. They are
unable to use this option because they lack the financial means to cover the cost of the transplant and
any necessary follow-up care.
Transplants are only occasionally performed in public hospitals. Over 95% of organ transplants,
particularly those involving organs like the liver and heart, are now solely carried out in the private
sector, where they can cost anywhere between Rs. 20 and Rs. 25 lakhs. Costs for even relatively simple
kidney transplants range from Rs. 8 to 10 lakhs.
Policy framework in India: The Transplantation of Human Organs and Tissues Act (THOTA), 1994,
prohibits the sale of human organs and tissues and regulates their removal, storage, and transplantation
for medical treatment. The aforementioned Act does not control the topic of artificial organs.
The National Organ Transplant Program (NOTP) has been implemented by the Government of India in
order to create a network of organ and tissue transplant organisations at the national, regional, and
state levels, connect them with hospitals that perform transplants and tissue retrievals, and maintain a
national registry of organ and tissue donors and recipients. This will allow for the creation of an effective
system for the collection and distribution of organs and tissues from deceased donors. The initiative
offers assistance for the creation of new or upgraded organ and tissue transplant and retrieval facilities
as well as tissue banks.
The Transplantation of Human Organs Act (THOA), 1994, which also legalises the idea of "brain death,"
the complete cessation of all brain activity, makes organ donation legal in India. While a person in brain
dead cannot sustain life, the ICU is able to keep their important body functions going. So that the organs
are in good shape, such patients are kept on artificial life support.
Before an individual's organs can be harvested in India, a panel of four doctors—a medical administrator,
an authorised specialist, a neurologist, and the doctor treating the patient—must jointly proclaim them
brain dead. The announcement of brain death is then made after a lengthy set of testing.
How to register to donate an organ-You can voluntarily donate your organs by signing a consent
document, which will be used if you pass away. The National Organ and Tissue Transplant Organization
(NOTTO) website has a consent form that you must fill out.
The hospital that is contacted for organ removal can also access it. The legal custodian of the body must
sign a consent document in the case of deceased donation.
Organ donation organisations can also provide a donor card to a prospective donor. The card represents
one's readiness to donate even if it is not legally binding.
Connecting with other organ procurement groups across the nation - Connecting
with hospitals equipped to handle organ transplant procedures.
Solutions: The good news is that it's simple to make money while you have a
chronic condition because there are so many part-time employment,
freelance careers, and home-based company options that let you establish
your own hours. Working for yourself allows you to work when you're
motivated and take breaks as needed.
Expand the availability of nighttime dialysis services.
Extensions of leave and frequent visits for dylaisis may enrage employers.
The Americans With Disabilities Act (ADA) of 1990 forbids employers with more than 15 workers from
discriminating against workers who have chronic renal illness. Employers might also need to make
adjustments for some CKD patients who require assistance.
The Ticket to Work (TTW) and Self Sufficiency Program is a free, federally supported job programme
offered by Social Security for those on Social Security Disability who are between the ages of 18 and 64.
(SSD). It offers assistance with entering or returning to the workforce. Services could include training,
job aid, benefits counselling, and job coaching.
The Foundation also engages with patients and families with end stage organ failure in counseling,
directing and advising on diet, medication, costs involved. Most of the people in need of this counseling
are from less privileged or uneducated backgrounds. They need to be directed in the right path.
The main aim of providing subsidized dialysis and financial assistance for transplantation, medication and
investigation costs to the underprivileged with kidney disease.
Lack of appropriate advice regarding food consumption, lifestyle, illiteracy, genetic, environmental
factors, and poverty, may all lead to Chronic Kidney Disease.
VASU was set up with the vision to create a society free from poverty, unemployment and disease, by working
in the fields of rural poverty and economic deprivation. VASU works towards removing economic inequality
and social injustice, inculcating entrepreneurship and generating livelihood and income by promoting self-
employment activities in rural and tribal areas, especially those which are highly affected by militancy. Our
vision is to infuse technologies through well designed & need based training and demonstration, providing
vocational training to the rural youth, promoting traditional crafts, formation of Self-Help Groups(SHGs) for
taking up economic activities, utilization of local resources and skills, and ensuring sustainable development
without causing damage to the environment. Help of skill India initiative
People with kidney disease may experience tiredness or weakness, and may consider the type of job they are
performing. You may want to talk to your manager or supervisor about what you can do. Is there anything that needs
to be modified for your position? Are there different departments that may be more accommodating to your physical
needs? Should you work fewer hours or maybe work on different days.
People on peritoneal dialysis (PD) have an abdominal catheter that also should be considered
when doing physical labor, such as heavy lifting. Your doctor will give you guidelines such as how
much weight you can lift if you are peritoneal dialysis.
Objectives of the foundation- liaison with Government (State and Central) to pass favorable
legislation that will help increase organ donations in India. Networking with other organ
procuring organizations in the country. Raising resources to promote organ donation efficiently.
E-learning Courses, By this initiative we help Transplant Recipients; Persons on Dialysis & Caregivers
become selfreliant & meet their livelihood needs in a sustainable manner. TRIOMPH’s objectives are
To sensitize employers about the special needs of this community and put together a Talent Pool of
persons from the community, for enabling gainful employment. To work with Employers under
‘Diversity & Inclusion at Workplace’, for gainfully employing persons from this community, basis merit
and job requirement
'transplant tourism' show that it makes up an estimated 10% of global transplantation practices.
Possible law changes- Doctors should provide a cer to think if we want to donate the organ or not
by filling legal formality, it gives opportunity to the deceased patients kin to think about it but
w/o compulsion.
News/facts- High living donors, India is second only to the US in the number of organ transplants
conducted globally, despite the buzz around organ donation in India, India has some of the lowest rates of
deceased donations—those retrieved from brain dead patients.
Until last year, the rate of organ donation in India used to be 0.5 per million
population, but today it has climbed up to 0.8, which is a positive thing. Despite this,
we are still far away from other countries like Spain, USA, China, Germany, Australia
and Brazil who are way ahead when it comes to organ donation. While Spain is
leading the cause of organ donation with the highest rate of organ donation (per
million population) at 46.9, USA has 31.96 rate, followed by Australia and Brazil at
20.70 and 16.60 respectively. China, the most populous nation in the world also has a
better organ donation rate than India by O3.67
transplant infrastructure and expertise are concentrated in private hospitals and are only
accessible to those with the ability to pay
Today, India performs the highest number of living donor kidney and liver transplants in the
world but only a small number of deceased donor transplants. In 2019, 88% of 9751 kidney
transplants and 77% of the 2590 liver transplants performed in India were from living donors.
In comparison, in 2018 only 36% of kidney and 19% of liver transplants performed
globally were from living donors.
. Indian law permits foreigners to received deceased donor transplants when there is no
Indian waitlist candidate, and a number of cases in the past of foreigners receiving
transplants in India have been reported in the lay press. The claim that no Indian patient
could be identified has fueled public distrust that the system favors wealthy foreigners
over Indians.
The current system limits the health benefits of donated organs to patients with the
ability to pay and allows private hospitals to profit without contributing much to the
system. Poor Indians who donate organs have little or no hope of ever receiving
lifesaving transplants, and there is little investment in developing the necessary
infrastructure and expertise to support deceased donation in government hospitals
where most potential donors present for care.
strong public support for deceased donation,
It is not sufficient that donated organs are equally allocated to waitlisted patients in
public and private hospitals, if only wealthy individuals are ever waitlisted. The income-
related disparities in access to transplantation undermine public trust in the organ
donation and transplantation system and jeopardize the advancement of deceased donor
transplantation throughout the country. Therefore, it is imperative that policies to
address the financial barriers to deceased donation and transplantation are undertaken
Currently private hospitals pay a nominal organ maintenance fee to the donor hospital
that is not standardized between states. The implementation of a standardized organ
acquisition fee similar to that in the United States would generate necessary funds to
help advance the development of deceased organ donation services in the so-called
nontransplant organ retrieval centers.
According to WHO, “transplant tourism” refers to patients travelling across the borders to be
transplanted elsewhere. People tend to travel for transplantation, either because it is not
available in their home country.TT has become tarnished by organ trafficking and
commercialisation and is often thought to be illegal. However, not all medical tourism that
entails the travel of transplant recipients or donors across national borders is associated
with unethical behaviour. Examples include, when travel of a related donor and recipient
pair is from countries without transplant services to countries where organ transplantation
is performed or if an individual travels across borders to donate or receive a transplant from
a relative. Any official regulated bilateral or multi-lateral organ sharing program is not
considered TT if it is based on a reciprocated organ sharing program among jurisdictions
So to bypass all of obstacles, the solution has been going outside of national border to the countries with available excuse
to buy an organ from deceased donor.
Executive Summary
In the world today, education has grown to include understanding and becoming aware of the
human components of the community and society along with theoretical and practical learning.
To achieve this social connection and awareness, it is crucial to cultivate sensitivity for society
and its members, which can only be done through educational institutions that incorporate
numerous Social Awareness Programs.
Thus, the curriculum incorporates opportunities for working with NGOs and provides
opportunities for applying managerial skills for the benefit of society in order to support the
holistic development of future business leaders.
As the part of the Social Awareness Program of the institute, I got the opportunity to work for
Sumit Foundation. The organization caters to organ failure patients and help them in getting
right and affordable treatment and develop connection and robust system for facilitating organ
transplant while enhancing awareness about this cause.
The organisation seeked for my assistance with regards to proposals for new policies,initiatives
that we might enact for the benefit of the patients in the organ transplant and donation process
and how we could make them self-sufficient by setting up systems that provided jobs.
I attempted to provide them advice on how to improve patient employment chances by utilising
the presence of other NGOs, job portals, online projects, and course providers and collaborating
with them to create a powerful network. In order to provide jobs for the patients, we can also
capitalize corporate social responsibility efforts of the corporates and social entrepreneurs.
The organisation also wanted to know what new initiatives and policy changes we could
implement for the benefit of patients. There are countless ways to make organ donation,
transplantation, and the patient's life after treatment worthwhile. Some of them include raising
awareness, developing infrastructure for vocational rehabilitation, providing additional facilities
to organ donors and their families, strengthening partnerships between public and private entities
to maximise existing transplant infrastructure, increasing the number of deceased donors, and
many others.
Intro (pointers) - Organ failure occurs when an organ loses its capacity to operate normally and
needs outside assistance. It can majorly be seen in the form of Kidney Failure, Liver Failure,
Heart Failure. The life-saving medical treatment improvement is not helping a lot of organ
failure sufferers as India is experiencing a severe organ shortage. Only 6000 kidney transplants
are performed each year, despite estimates that 1.8 lakh patients develop renal failure, similarly
about 1 500 liver transplants are actually performed each year, despite the fact that India needs
between 25 and 30 thousand. Also there are, more than 50000 people in India suffer from heart
failure each year, yet only 10 to 15 heart transplants are performed there each year. Despite a 1
lakh-per-year need, about 25000 corneal transplants are carried out annually. Added to this is the
fact that transplants are only occasionally performed in public hospitals, over 95% of organ
transplants, particularly those involving organs like the liver, kidney, and heart, are now solely
carried out in the private sector, where they can cost anywhere between Rs. 20 and Rs. 25 lakhs.
Costs for even relatively simple kidney transplants range from Rs. 8 to 10 lakhs.
Due to this menace of shortage in timely supply of organ and higher concentration of private
hospitals than public in performing transplant make patients helpless as they might lack the
financial means to cover the cost of the transplant and any necessary follow-up care.
Furthermore, the organ failure patients in India have to endure a great deal of trauma. They often
lose their jobs because of frequent absenteeism while on treatment, lack of physical ability/
strengths and plethora of precautions make them workless. Such situation of inadequate income
added with lack of insurance, complexity of the disease and no outlet for redressal of personal
problems increases emotional stress for the patients, disconnects them from the basic livelihood
and the society. They frequently struggle with inferiority complexes, end up burdening their
families and ruining their finances, the worst part is all of their lives cannot be reverted as earlier.
Therefore, the dire need of today is to develop sensitivity towards organ failure patients and help
in empowering them so that they can live their remaining lives gracefully without any
discrimination. We need a mix of policy and societal changes, so that we can break this organ
shortage crisis, make the transplant process affordable and create a robust ecosystem to
rehabilitate the organ failure patients in our country.
As part of the Social Awareness Program, I had the opportunity to work as a research intern for
the Sumit Foundation. The organization's goal is to help people with organ failure obtain and
afford appropriate medical care in order to preserve their lives.
Objectives- Patients with organ failure typically report difficulty reintegrating into daily life
both during and after treatment, they become dependent on their carers as a consequence of their
underlying medical condition, their income diminishes, and they incur mental and emotional
stress. Therefore, it is critical to empower organ transplant patients fill them with confidence and
sense of independence.
Thus, with this mission to work for organ failure patients, the organization wishes to expand into
other verticals, and one of such is creating employment opportunities for such patients and
reconnect them back to their livelihood.
The objective of my project was to assist the organization in identifying and making
recommendations for workable solutions so as to how we can create an employment opportunity
for organ transplant patients so that they can work and maintain a connection with at least the
primary means of livelihood.
Furthermore, the organization wants the new laws to be enacted and bring changes in existing
policies that are favourable to and facilitate the organ transplantation procedure in India to
support patients. In addition, I performed research on the legal and policy frameworks
governing the healthcare sector in India and other countries to assist non-governmental
organisations in utilising and strengthening the laws to support patients and working along with
the government to make radical reforms.
Description of work- Sumit foundation was founded in the year 2015. It envisions to raise
funds to effectively promote organ donation and connect with other organ procurement
organisations and hospitals across the state in order to handle organ transplant cases. It also aims
to increase public awareness among a variety of demographic groups, establish a network to
provide logistical support for organ utilisation and donation in hospitals, and work with the
government (both state and central) to pass legislation that will encourage more organ donations
in India. The organization just not want to limit itself in helping patients upto treatment but is
also planning to venture to provide rehabilitation support and connecting patients back to the
social and economic livelihood. As an intern I helped the organization in their new vertical
prospects by providing feasible solutions for their new initiative.
My work primarily dealt with planning and developing model for the NGO through which it can
provide an ecosystem to the organ transplant patients and rehabilitate them post treatment so that
they can live an empowered life.
I commenced my work by first learning about the NGO I was working for. What it does, its
mission, what it stands for, how it runs, and all it has done in the past. After this, I was given
information about the project and its objectives. The NGO wants to expand its work for organ
transplant patients by offering additional facilities of providing them with occupational,
employment opportunities and thus reconnecting them again with the basic means of livelihood
as it is frequently seen that patients on treatment lose jobs and some of them are unable to work
with full potential due to underlying disease and treatment
I initially sought to study the condition, how organ transplants work, what challenges and
complications patients have in order to construct the model. Then I did research on the different
jobs that may be offered to such patients, different employment portals, and current organisations
that operate along similar lines, as well as how we could integrate various aspects to build an
ecosystem for people who are suffering from organ failure.
Along with this I also gathered insights on organ transplant laws around as well as in India how
can we improve the existing laws as well suggest new policies that can facilitate organ failure
patients.
Key Findings –
The Transplantation of Human Organs and Tissues Act (THOTA), 1994, prohibits the
sale of human organs and tissues and regulates their removal, storage, and transplantation
for medical treatment. The aforementioned Act has no authority on the subject of
artificial organs. The Government of India has implemented the National Organ
Transplant Program (NOTP) to establish a network of organ and tissue transplant
organisations at the national, regional, and state levels, connect them with hospitals that
perform transplants and tissue retrievals, and maintain a national registry of organ and
tissue donors and recipients. This will enable the development of an efficient system for
collecting and distributing organs and tissues from dead donors. The project provides
funding for the establishment of new or improved organ and tissue transplant and
retrieval facilities, as well as tissue banks.
Transplant infrastructure and expertise are concentrated in private hospitals and are only
available to people with sufficient financial means.
Today, India performs the most living donor kidney and liver transplants worldwide, but
only a few deceased donor transplants.
People with renal illness may feel fatigued or weak, and they may reconsider the type of
employment they are doing. Peritoneal dialysis (PD) patients have an abdominal catheter
that should be considered when performing hard labour, such as heavy lifting.
'Transplant tourism' show that it makes up an estimated 10% of global transplantation
practices.
Indian law permits foreigners to received deceased donor transplants when there is no
Indian waitlist candidate, and a number of cases in the past of foreigners receiving
transplants in India have been reported in the lay press.
Some of the laws that prevail in US are -Ticket to Work (TTW) and Self Sufficiency
Program- It is a free, federally funded employment program that provides support to enter
or re-enter the workforce with inclusion to job coaching, benefits counseling, training,
and job assistance. Vocational rehabilitation (VR), a state-funded service, assists people
with disabilities with vocational services such as resume preparation, job searching, and
other related activities. In America, the Equal Employment Opportunity Commission
(EEOC) is established in the event that any employee encounters workplace
discrimination. Patients undergoing organ transplants are also included. The Uniform
Anatomical Gift Act of 1987 requires every hospital in the United States to ask every
patient on or before admission whether the person has pledged an organ or tissue
donation. It is stated that when this law was imposed in the United States, both awareness
of organ donation and the number of organ donors grew dramatically.
• All transplanted human organs provide significant risks to the recipient, either due to
poor organ function or disease transmission from the donor to the recipient, with cancer
and infectious illnesses being the most serious. There are risks to the donor, both
immediate and long-term, in the case of living donors. Consent is conditional on
understanding these dangers.
Recommendations -
The following solutions can be provided with respect to the creation of the employment for
patients-
There is need to sensitize employers about the special needs of organ failure patients. We can
rope in social entrepreneurs for it. We can construct a database of these entrepreneurs, connect
with them, and develop a network since social entrepreneurs already have an innate sensitivity
to society and its citizens. On the basis of business of the social entrepreneurs, roles available
and the patients' abilities and skills we can locate jobs that matches all three factors.
Another issue is that businesses often prefer regular employees who won't quit their positions
and want a longer commitment from their workers. To address this, we may identify short-term
paid online tasks, or we can use the gig economy concept to create jobs for certain projects or
programs. There are so many part-time jobs, freelance and home-based business opportunities
that allow patients to choose your own hours, the good thing is that it is easy to make money in
chronic ailment.
We can collaborate with NGOs that help unemployed people in providing employment such as
Vasu so that we can synergize our pool of organ transplant patients looking for job with their
network of employers and provide them jobs.
Patients frequently experience demotivation as a result of their prolonged illness and
treatment; they grow mentally tired and lose connection to their jobs and the broader
community, so it is crucial to instill a passion for working before actually placing them in a
position of employment. This will ensure that they are driven to do their work best of their
potential. We can inspire organ transplant patients by creating communities of similar patients
who have experienced the same hardship to share their respective journeys and how did they
battled with it victoriously and together they can uplift each other. Also through hiring of
experts, we can also offer counselling through our NGO, helping patients let go of their trauma
and find motivation to work.
There are some good policies pertaining to the employment of organ failure patients in
USA like-
a) Ticket to Work (TTW) and Self Sufficiency Program- This is a free, federally funded
employment program through Social Security for people between the ages of 18-64,
who are on Social Security Disability (SSD). It provides support to enter or re-enter
the workforce. Services may include job coaching, benefits counseling, training, and
job assistance.
b) Vocational rehabilitation (VR), a state-supported service, helps with employment
services, such as resume writing, job seeking and similar services for people with
disabilities. Some people with kidney disease would like to continue to work in their
previous job, but due to its physical demands are no longer able to do so. Vocational
rehabilitation offers the opportunity to test for other interests and provides job
training or educational opportunities for positions that may be more suitable.
c) Equal Employment Opportunity Commission (EEOC) is set up in America in case if
any employee finds any sort of discrimination against him/her at workplace. This also
includes organ transplant patients.
d) In the United States, the Uniform Anatomical Gift Act of 1987 compels every
hospital to ask every patient on or before admission whether the person has pledged
an organ or tissue donation. It is claimed that when this rule was implemented in the
United States, awareness of organ donation increased significantly, as did the number
of organ donors.
India can also draw inspiration from this and formulate policies that ease employment of
patients.
Government can also focus on expanding the availability of nighttime dialysis services as
the patients find it difficult to tradeoff between their jobs and treatment. By doing so
frequent absenteeism can be avoided.
Providing subsidized dialysis and financial assistance for transplantation, medication and
investigation costs to the underprivileged patients can help along with their well
implementation.
Widespread provision of donor detection units.
Donated organs are not equally allocated to waitlisted patients in private hospitals. The
income-related disparities in access to transplantation undermine public trust in the organ
donation and transplantation system and jeopardize the advancement of deceased donor
transplantation throughout the country. Therefore, we need policies to address the
financial barriers to deceased donation and transplantation are undertaken and hospital
records can be checked on regular basis by authorities to prevent such disparities.
Currently, private hospitals pay a small organ maintenance charge to the donor
hospital. Implementing a standardized organ acquisition charge, similar to that used in the
United States, would produce the funding required to advance the development of organ
donations services.
To ensure capacity to perform deceased donor transplants in poor patients, the
government could incentivize private hospitals by waiving the organ acquisition fee for
these transplants.
Right king of transplant tourism can also be encouraged by the authorities. According to
the World Health Organization, "transplant tourism" refers to patients travelling across
borders to be transplanted elsewhere. People travel for transplantation since the procedure
is not available in their own country. TT has been tainted by organ trafficking and
commercialization, and it is frequently considered unlawful. However, not all medical
tourism involving the cross-border travel of transplant recipients or donors is related with
unethical behavior. For examples when travel of a related donor and recipient pair is from
countries without transplant services or organ availability to countries where organ
transplantation is performed and is available or if an individual travels across borders to
donate or receive a transplant from a relative.
The current system does not pay heed to the health benefits of organs donors. Therefore
government should investment in developing necessary infrastructure and expertise to
support and care for living donors.
One of the biggest reasons why organ donation remains low flavor among many
individuals is a lack of information and availability of data regarding transplant status.
According to the amendment, every state must have a state-appointed authority as well as
an advisory group to oversee the organ donation situation across all hospitals in the state.
Most states lack such an entity, and in those that do, such as Tamil Nadu and Kerala.
Thus government must focus on mandatorily establishing such bodies and must oversee
their working to prevent any inconsistencies.
The type of job that is suitable for organ failure patients can depend on several factors,
such as the type of organ failure, the severity of the condition, and the patient's overall
health and abilities.
In general, organ failure patients may need jobs with flexible schedules or
accommodations that can help them manage their health needs. For example, they may
need to take frequent breaks, work from home, or have access to medical facilities
during work hours.
Some types of jobs that may be suitable for organ failure patients include those in
healthcare, customer service, administrative work, or creative fields, where they can work
on their own time and pace. However, the type of job that is most suitable for an organ
failure patient will depend on their individual circumstances and abilities. It's important
to discuss employment options with a healthcare team and consider any legal
protections or benefits that may be available
There are several ways that we can improve organ donations:
1. Education and Awareness: Educating the public about the importance of organ
donation and the lives it can save can help increase the number of donors. Public
awareness campaigns can help dispel myths and misconceptions about organ
donation and encourage people to sign up as donors.
2. Improved Policies: Policies that support and encourage organ donation can help
increase the number of donors. These can include policies that make it easier for
families to consent to donation, protocols that ensure all potential donors are
identified and evaluated, and systems that prioritize organ donation in end-of-life
care.
3. Collaboration among healthcare professionals: A collaborative approach among
healthcare professionals, including doctors, nurses, and transplant coordinators,
can help identify potential donors and ensure that their organs are properly
evaluated and managed.
4. Opt-out systems: Opt-out systems are programs that presume individuals want
to donate their organs unless they specifically opt-out. These systems have been
shown to increase the number of organ donors in some countries.
5. Living donor programs: Living donor programs, such as kidney donation, can help
reduce the demand for organs from brain dead donors and may help to increase
overall rates of organ donation.
Overall, increasing the number of brain dead organ donors requires a comprehensive
approach that involves public awareness, education, and policy changes to support and
encourage organ donation
There are two categories of organ donation:
• Living donation: This occurs when a living person donates an organ for transplantation.
The donor can be a family member, relative, friend, neighbour, or an in-law.
• Deceased donation: Here, the patient must register in a hospital that performs transplants.
They are put on a waitlist, and when the organ from a suitable deceased donor (brain
death) becomes available, the patient is informed.
In India, a panel of four doctors – a medical administrator, an authorised specialist, a
neurologist, and the doctor treating the patient – must jointly declare someone brain dead
before their organs can be harvested. A series of exhaustive tests is then performed to
announce brain death.
2. The AC scrutinizes the joint application made by the donor and the recipient
and conducts an interview to ensure there is a genuine intention among them both and
make sure that the donor understands the potential risks of the surgery.
3. A hospital can have its own AC if they carry out more than 25 transplants per
year.
The purpose of this body is to regulate the process of authorization to approve or reject
transplants between the recipient and donors other than a first relative. The primary
duty of the committee is to ensure that the donor is not being exploited for monetary
consideration to donate their organ. The joint application made by the recipient and
donor is scrutinized and a personal interview is essential to satisfy to the AC the genuine
motive of donation and to ensure that the donor understands the potential risks of the
surgery. Information about approval or rejection is sent by mail to the concerned
hospitals. The decision to accept or reject a donor is governed by Clause 9[4] of the THO
act.
Living Donors
A living donor is a person who is above the age of 18 years and has voluntarily
authorized for the removal of his organ/tissue, during his lifetime. A living person can
legally donate:
(a) One Kidney as the donor’s body is capable of functioning adequately with one
kidney.
(c) A part of his/her Liver as the other segment of the liver can regenerate after
some time for both, the donor and the recipient.
Under this category, only immediate blood relations are accepted as donors, for
example, parents, children and siblings. As per the THOA rule 2014, grandparents and
grandchildren have also been included in the list. Moreover, spouses are also accepted
as living donors under this category. However, they need to prove their relationship with
the recipient by proper legal documents or medical genetic tests.
In such a case, the donor is not related to the recipient in any way and is willing to
donate out of affection and attachment towards him/her. Permission is required in such
a case which is granted by the Authorization committee by appearing in an interview.
(c) SWAP Donors
This is suitable for cases where the near-relative donor is incompatible with the
recipient. Such a provision involves swapping of the donor when the donor of the first
pair is a match with the second recipient and donor of the second pair is a match with
the first recipient. However, is it only permissible in the case of near-relative being the
donors.
(d) Foreign Donors
In this case, only those foreign donors are permitted who are ‘near-related’ to the
recipient. However, Indian living donors who want to donate to a foreigner, other than a
near relative, are not permitted as per the act. In case a foreigner comes to India for
transplantation, the embassy of the country of origin must grant such permission and
must certify the relationship between the donor and the recipient.
2. DECEASED/CADAVER DONORS
A donation, being a source of organs, can either be made after brain stem death (brain
death) or after cardiac death (when the patient’s heart stops beating). A person can give
his consent during his/her lifetime, if he/she is more than 18 years of age and if he/she
is willing to donate his/her organs after he/she dies. After certification of brain death of
the patient, it has been now made mandatory for the medical practitioner to ask the
patient’s near relative or the person being in lawful possession of the body about their
plans of organ donation, even if the patient has already consented for the same during
his lifetime.
However, the cost of maintaining the body of the deceased person, retrieval of the
organs or the tissue, their preservation and transportation will not be borne by the
family of the donor and shall be borne either by the recipient or the institution as
already declared by the respective state government.
Also, now a person has an option to give consent for the same while applying for his
driving license. His/her preference would reflect on it.
To do a diagnosis of a brain death donor, an ICU is required because it has the facilities
to sustain the other organ system of the patient. But, the problem is, such ICUs are few
in number and are mainly located in big metropolitan cities. These are already
overburdened, unstaffed and lack a central command structure to function effectively.
So, on one side there is a patient who is dying, and on another who is already dead but
needs proper attention for successful retrieval of body organs. This situation
automatically makes the medical professionals give less priority to the brain dead
patient.
The Transplantation of Human Organs and Tissues Rules (THOT), 2014 has many provisions to
remove the impediments to organ donation while curbing misuse/misinterpretation of the rules. The
following are a few
When the proposed donor and the recipient are not near relatives, the Authorisation
Committee shall evaluate that there is no commercial transaction between the recipient and
the donor and that no payment has been made to the donor or promised to be made to the
donor or any other person
When the recipient is in a critical condition in need of life saving organ transplantation within
a week, the donor or recipient may approach hospital in-charge to expedite evaluation by the
Authorisation Committee.
Every authorised transplantation centre must have its own website. The Authorisation
Committee is required to take final decision within twenty four hours of holding the meeting
for grant of permission or rejection for transplant and the decision of the Authorisation
Committee should be displayed on the notice board of the hospital and the website within
twenty four hours of taking the decision. The website of transplantation centre shall be linked
to State/Regional/National Networks through online system for organ procurement, sharing
and transplantation.
There would be an apex national networking organization at the centre. There would also be
regional and State level networking organizations where large of number of transplantation of
organ(s) or tissue (s) are performed. The State units would be linked to hospitals,
Organ/Tissue matching Labs and Tissue Banks within their area and also to regional and
national networking organisations. Such networks shall coordinate procurement, storage,
transportation, matching, allocation and transplantation of organs/tissues and shall develop
norms and standard operating procedures.
A National Registry on Donors and recipients of Human Organ and Tissue accessible on-line
through dedicated website having National, Regional and State level specificities will come
into force. National/Regional registry shall be compiled based on similar registries at State
level. The identity of the people in the database shall not be in public domain.
Transplant Systems
Consent Mechanisms
In 2005, a national organ registry was established as a result of the efforts of the Indian Society of
Organ Transplantation.6 The first 12 years of the program was sustained by efforts of the
governments, nongovernmental organizations (NGOs), civil society, religious leaders, and other
stakeholders in creating awareness, and this continued until 2010. 7
The Australian Government has developed a professional education family donation conversation
program to increase organ donation rates; program includes introductory donation awareness
training and an online learning family donation conversation workshop. 67
The green corridor system is one way to expedite organ transplants and save lives.
In this system, the traffic department collaborates to transport a vital organ in less
than 60-70% of the time that is usually taken to go from place A to place B.
While this system was first devised to handle medical emergencies, it is widely used
for the purpose of transfer of donated organs.
A ‘green corridor' is a special route that is managed in a way that all the traffic
signals that come in the route of the hospital where an organ is harvested and the
hospital where it is to be transplanted, are green and controlled manually.
By adopting this method, all the red signals on the way are skipped thereby
speeding up the travel time by several minutes - minutes that are enough to save
someone's. For instance, in cities like Mumbai, Delhi, Bangalore, it is extremely
difficult to deal with traffic. Should there a need arise to transplant an organ during
the peak traffic hours, it gets extremely difficult and virtually impossible to get to
the destination in time. The earlier an organ is transplanted, the more chances of
success.
Green corridor makes sure that there is no organ wastage. It is an extremely useful
system of managing traffic that requires a very strong coordination among the
traffic officials. When a heart is donated, it needs to be airlifted as it is a race
against time. There is a time of only 4 hours between harvesting and transplant, in
which the transfer must happen. It is extremely necessary to get the organ to the
recipient in time. That is where green corridor comes in handy.
In India, the concept of green corridor has been in use since 2014. Chennai was the
first city to incorporate this concept. An ambulance carried a heart to save the life
of a 21-year old and covered a distance of 12kms in just 14 minutes in
ChennaiGovernment General Hospital to Fortis Malhar Hospitals in Adyar.
Otherwise, the time taken for travel would have been more than 45mins.
This system has also helped save lives in cities of Mumbai, Gurgaon, Hyderabad,
Bangalore, Kolkata, and Indore in the last two years.
Surat has become the first city in India to have incorporated the system of black
and white notification which make sure that no time is wasted in created a green
corridor. Donate Life initiates the process by calling the police department, after
which every necessary thing is taken care of to transport the organ on time. Organs
would not have reached the recipient on time without the support of Surat Police
Department and contribution of the Airport Authority Of Surat in facilitating speedy
takeoffs and landing and also night landing and takeoffs in a very short time.
Apollo Hospitals, Delhi held a special felicitation celebration with more than 60-70 patient families
having undergone a transplant • Event highlighted the sacrifice made by spouses, relatives and near ones
to save the life of a loved one As the world celebrated Valentine’s Day, the day of love and togetherness,
Indraprastha Apollo Hospitals organized, a unique event to celebrate the essence of the day. While some
shower gifts to their loved ones, others offer something more priceless. The donation of an organ - the
proverbial gift of life - was celebrated with doctors, patients, donors and loved ones celebrating sacrifice
and eternal love at the event.
Earlier, organ allocation policy of states required needy patients to have domicile of that
particular state to be registered as a recipient on that state’s waitlist. Only state
residents were eligible to be put on the organ allocation waitlist.” The government of
India has taken a decision to remove the domicile requirement, and informed
all states about it. Now a needy patient can register to receive an organ in any
state of his or her choice, and will also be able to get the surgery done there,”
it added.The Centre has also asked states that used to charge for such
registration to not do so. Among the states that sought money for registration
were Gujarat, Telangana, Maharashtra, and Kerala.“It was brought to our
notice that certain states asked for anything between ₹5,000 and ₹10,000 to
register a patient on the organ recipient waitlist. The government of India has
asked those states to stop the practice with immediate effect,” the document
said. Some states used to give preference to their own residents and would not allow
patients living in other states to register for organ allocation. Now we have asked the
states to do away with that requirement.
Process of donation-