By Busiku Esther Sharon
In the wake of healthcare advancement that has seen the rise of human organ donation and transplantation to cure non-communicable diseases (NCDs), Uganda has joined the list of countries in the world with comprehensive legislation governing the complex trade.
A 2021 report by Ankita Meghani et al on curbing the rise of NCDs in Uganda notes that NCDs are likely to become a major healthcare concern in Africa as they are predicted to become the leading cause of death by 2030.
The same report reveals that in 2016 alone 97,600 deaths owing to NCDs occurred in Uganda which is a significant number accounting for at least one death in every three occurrences.
The report calls for Government to develop and implement a comprehensive strategic plan for NCDs that all stakeholders can agree upon and adopt as the guiding framework for action.
Human organ donation and transplantation is currently seen as the light in addressing the health challenge especially now that healthcare is continuously evolving. It’s viewed as a means of enhancing the quality of life for those in need.
“Transplant is a life-changing experience. Organ donation transforms lives. It is torture for you, torment for you as an individual in need,” said Andy Cole, Former Manchester United and England Striker on how a Kidney transplant saved his life.
On the 29th of September 2022, heeding these calls, the Parliament of Uganda passed the Uganda Human Organ and Transplant Bill, 2021 which seeks to establish a legal framework for the regulation of organ, cell and tissue donation and transplantation in Uganda.
The human organs, tissues and cells being; kidneys, heart, blood, lungs, liver, pancreas, intestines, thymus, bone marrow, bone, tendon, ligaments, corneas, cells, skin, amniotic membrane, penile, uterus, etc.
The Bill that President Yoweri Museveni has yet to sign into Law (assent) seeks to protect the dignity and identity of every person and guarantee, without discrimination, respect for his or her integrity and other rights and fundamental freedoms with regard to donation and transplantation of organs, tissues and cells of human origin.
Owing to the fact that Uganda hasn’t had a law on organ donation and transplantation, there has been an increase in the illicit trade in and trafficking of human organs, cells and tissue as it’s considered a lucrative business.
A report by the United Nations Office on Drug and Crime (UNODC) says $600m was earned through illicit organ transplants in 2015.
The trade is said to be happening, majorly outside the countries of origin, with individuals from developing countries being targets as they seek to earn a better living abroad.
According to the Parliamentary Health Committee chair, Dr. Charles Ayume, the law is pro-people as it seeks to not only offer a service but also protect vulnerable groups of people from the illicit trade of organ trafficking.
The only authorized transplantation activities include; donation, transplantation and harvesting of organs, tissues and cells solely for the therapeutic benefit of the recipients where there is no alternative therapeutic method of comparable effectiveness.
The same law will save Ugandans the obscene amounts of financial resources spent in seeking the service outside Uganda as organ donation and transplantation will now be allowed in the country.
“Due to the fact that Uganda does not have any law regulating organ and tissue donation and transplantation, many Ugandan citizens are seeking medical care from countries like India, the United Kingdom and Kenya among others in cases where organ donation and transplantation is the solutions to their health problems,” Dr. Ruth Aceng the Health Minister told Parliament.
Ayume added that in light of the huge demand by patients in Uganda requiring organ, tissue and cell transplants, the most notable being Kidney, Skin and Stem cells (bone marrow) among others, this bill is timely and committed to ensuring that the services are conducted as soon as possible.
“Many patients require dialysis which is not affordable by the average Ugandan. This Bill will give hope to patients with kidney failure who cannot afford costly kidney transplants abroad,” Ayume said.
In an effort to realize the object of the bill, a Uganda Organ and Transplant Council will be established to oversee and regulate organ, cell and tissue donation and transplantation in Uganda.
It will be responsible for the regulation, organization and supervision of all national human organ, tissue and cell donation and transplant activities including regulating designated transplant centres and approved banks.
Mulago National Referral Hospital will be the pioneering transplant centre. However, the Minister may on the recommendation of the Council designate a hospital as an organ, tissue or cell donation and transplant centre if it is a fully-fledged hospital with a full range of services capable of handling the transplant program.
These include; routine surgeries, emergency care and other services and has an Intensive Care Unit and High Dependent Unit beds dedicated to the transplant program, specialized medical professionals, two adjacent theatres-one for the donor and another for the recipient.
The centre must have a fully-fledged specialized organ support unit for organ, tissue or cell donation or transplantation, radiology and imaging capability, 24-hour laboratory services covering the full range of tests necessary for transplant surgery but particularly the tests requiring less than 48 hours of turnover.
No hospital is expected to carry out, associate or assist in the removal, storage or transplantation of organs, tissues or cells if it’s not a designated centre for the program once the Law takes effect.
The Council is also expected to establish and maintain a national waiting list for potential organ, tissue and cell donors and recipients drawn from designated transplant centres, hospitals and health centres ensuring that organs, tissues and cells are allocated to patients on the national waiting list in a fair and equitable manner.
Removal of an organ, tissue or cell from a dead person believed to have died under suspicious circumstances unless a police investigation is concluded, is prohibited.
Equally removal of the same from bodies meant for interment, cremation or any other disposal is prohibited and anyone found guilty of committing the offense is liable, on conviction, to a fine not exceeding ten thousand currency points or imprisonment not exceeding seven years or both.
A currency point is equivalent to twenty thousand shillings (Shs. 20,000) which means, if found guilty of the aforesaid offense, you are liable to a Shs. 200,000,000 fine.
Prior to the harvesting of any tissue, cell or organ from a donor, the designated centre will obtain consent for donation in accordance with this Law and document it in writing.
The centre personnel will be trained on the procedure and ethics of obtaining and documenting consent for donation, the donor and recipient information included.
In the case of non-living donors who did not give authorization to donate organs, cells or tissue prior to death, permission to harvest organs, tissues or cells from the deceased shall be sought from close relation. The close relation being a spouse, son, daughter, father, mother, brother or sister.
When it comes to children, donation from a living child is prohibited. However, in the case of a brain-dead or dead child, donation is permitted but with appropriate consent meaning the child, prior to dying gave consent in the presence of at least one close relative or an authorized officer.
In the case where the child dies before giving consent, permission can be given by the person who had parental responsibilities for the child before death, or a close relative. All this witnessed by two adults of sound mind.
Where an adult is alive, “appropriate consent” means his or her consent was given in writing and witnessed by at least two adults of sound mind, one of who is a close relation but where the adult giving consent is between the ages of 18 and 21 years, one of the witnesses should be a person with parental responsibility for the young adult.
Harvesting or use of human organs, tissues or cells must be considerate of cultural, spiritual needs, values and beliefs of the close relations of the person whose organs, cells or tissues are being harvested as long as the information is available.
While organ donation and transplantation is a life-saving action, not all groups have fully embraced the action based on religious, cultural and spiritual beliefs. For example, the Jehovah’s Witness religious group does not permit blood transfusion for religious reasons.
Some members from the Uganda Blood Transfusion Service (UBTS) during one of the consultation meetings with the Parliamentary Health Committee made it known that some Indian and Asian groups only permit the harvesting and use of blood from members of the same ethnicity.
It’s for this reason that the harvesting personnel take into account these needs and beliefs during the harvesting or use process of human organs, tissues or cells.
Authority for removal of a human organ, cell or tissue from a body sent for postmortem examination for any medico-legal or pathological purposes, is only permitted if the person with authority under the law believes that the organs won’t be needed for the postmortem and also if the deceased expressed no objection to the removal of their organs for donation or revoked their decision to donate prior to death.
Such a provision in the law will go a long way in protecting individuals from the unauthorized removal of organs when they die or without the knowledge and approval of their close relations.
Take this for example; in June 2022, the parents of a one Namuli, a senior four girl who committed suicide in a dormitory at Wanyange Girls’ SS in Jinja, upon conducting a second postmortem in Mulago suspected foul play when they discovered that her uterus was missing even after the first report indicted a normal uterus and the fact that they were not involved in the postmortem process the first time around.
Commercialization of human material for transplantation is strictly forbidden. Monetary or any other forms of compensation for organs, tissues or cells other than reimbursement of donation-related expenses is also prohibited.
The sale of one of a pair of organs such as an eye or kidney by a living donor for financial or any other form of compensation is prohibited. Anyone who commits the offense and is found guilty is liable to imprisonment for life.
A person involved in the trade, seeking of potential donors, advertising for donors for reward, offers to sell organs, and initiates the arrangement. The general organization and management of the trade commits an offense and upon conviction is liable to a fine not exceeding one hundred thousand currency points or imprisonment not exceeding twenty years or both.
Where an individual renders his or her services to or at any hospital and who, for purposes of transplantation, conducts, associates with, or helps in any manner, in the removal of any human organ, cell or tissue without authority and contrary to law commits an offense and is liable, on conviction, to a fine not exceeding one hundred thousand currency points or imprisonment not exceeding twelve years or both. Outside of the hospital, the individual is liable to imprisonment for life if convicted.
Where the individual is a medical practitioner, they will be referred to the Council for necessary action which could mean temporary (10 years) or permanent revocation of their membership to the Council.
A person involved in human organ, tissue, or cell trafficking commits an offense and is liable, on conviction to a fine not exceeding one hundred thousand currency points or imprisonment not exceeding twelve years or both.
With regards to donated material, a person who uses or stores for use donated material for purposes that are not qualifying under the law commits an offense and is liable upon conviction to a line not exceeding fifty thousand currency points or imprisonment not exceeding seven years or both.
Generally, a person who contravenes a provision of this Act or any regulations made under this Act for which no punishment is separately is liable on conviction, to a fine not exceeding ten thousand currency points or imprisonment not exceeding three years or both.
The Uganda Human Organ Donation and Transplant Act aims to protect Ugandans from being victims of illegal organ trade or trafficking. But most important, it is the government’s way of ensuring it provides and takes all meaningful and practical measures to ensure the provision of basic health services to Ugandans as is provided by the Constitution.