Muslim Kidney Action Committee, Singapore
MKAC had its genesis in 1990 when MUIS invited representatives from 10 Malay Muslim organizations to form the Muslim Kidney Action Committee. It was given the charter to promote awareness on matters relating to kidney pledging and organ transplantation and to encourage more Muslims to pledge their kidneys.
Mr. Ameerali Abdeali was appointed as the Chairman of MKAC.
Convincing the Muslim community about organ donation was an uphill task due to the prevailing mindsets at that time coupled with the lack of reliable information. Nevertheless, to increase public awareness, MKAC worked in close collaboration with MUIS and the National Kidney Foundation (NKF) to reach out to the community through public education programmes such as conferences, seminars, workshops, road shows. public forums and through conducting dialogue sessions with all Malay/Muslim organizations and with individuals from all walks of life.
As a result of these efforts, understanding and comfort levels were raised and soon they had the first case of a Muslim donating the organs of his deceased family member for transplantation. This paved the way for others to do the same. Also, the number of kidney pledges by Muslims increased markedly from just 400 in 1990 to 16.000 in 2004. This is a remarkable achievement considering that the pledges had to be endorsed by 2 waris or next of kin.
But the voluntary pledging process had its limitations. MKAC felt that the best way to overcome the need for pledging was to include Muslims in the Human Organ Transplant Act (HOTA). So MKAC worked hard for more than a decade to get the support of Malay Muslim organizations and the Malay Muslim community.
Said Mr. Ameerali “We had a strong sense from the ground that Muslims would support being included in HOTA. So we organized an intensive campaign which netted the signatures of more than 60,000 Muslims to endorse organ donation.
This ground work done by MKAC together with the submission of a comprehensive Report led to the change of the fatwa by MUIS. Fatwa Committee headed by the former Mufti Syed Isa Semait, in his book “Keeping the Faith” Syed Isa duly acknowledged the efforts of MKAC work with this quote “We felt that if Muslims want to come under HOTA they have to voice their concerns and views.
MKAC played a positive role in getting people to support the change as their voices grew and a number of Muslim countries permitted transplants automatically, MKAC felt it was time to review the fatwa again.” The subsequent revision of the fatwa led the way for Parliament to pass an amendment to include Muslims in the Human Organ Transplant Act with effect from 1 August 2008.
MKAC became a NGO
In April 2004, MKAC was registered as an NGO with the Registry of Societies as the Muslim Kidney Action Association so that it could operate independently and raise and manage its own funds. Within one year it was given a Charity status by the Commissioner of Charities.
Said Mr. Ameerali, President of MKAC, “MKAC’s vision is to see kidney patients realize their full potential and live happy and meaningful lives”. MKAC believes that it is much better to invest efforts in empowering individuals to take charge of their own lives rather than to provide a crutch for people to lean on.
As of now, there were more than 435 Muslim kidney patients registered with MKAC. Taking into account the number of family members the total number of beneficiaries exceeds to 1200 persons. Each of them face multiple challenges in life. They need to undergo costly dialysis sessions, take expensive medications and make regular visits to the doctor to monitor their condition. In many cases their life is even more difficult as they don’t have the necessary support structure especially for their emotional and financial needs.
Despite these challenges kidney patients bravely endure their situation with patience and perseverance. Most certainly, they need all the help they can get. Said Mr. Ameerali “We do not see our beneficiaries as being helpless. In fact, many of our most loyal volunteers are themselves kidney patients. We at MKAC do our best to serve their needs. These include the provision of financial assistance to kidney patients for dialysis and medical fees, free monthly general medical examinations and medications, one-to-one counseling sessions, skills training courses in sewing, cake making and food preparation, health talks, zakat disbursement and regular bonding sessions with kidney patients and their family members. All our programmes are aimed to uplift the lives of our beneficiaries and in doing so we place great emphasis on the values of dignity, compassion, mutual respect, tolerance and understanding.”
Mr. Ameerali added “It’s one thing to be struck with a debilitating disease; it’s a double the heartache if nobody cares and you are just seen as a burden.” For those who cannot come out of their homes, for example those who are bed ridden, those who are paralyzed or blind, or those who need to be with their children, MKAC has a Befriender Programme where our volunteers visit them in their homes to let them know that they have a caring friend who is there to provide whatever assistance they require.
Under the Befrienders Programme, MKAC Befrienders make visits to the homes of the beneficiaries. Such personal visits are intended to provide moral support and encouragement and build trust and rapport allowing the patients to gain familiarity and comfort levels. The Befrienders will give a listening ear to the beneficiary. In the process the Befriender will better understand the situation and what the pressing needs are. This will enable the Befriender to make recommendations to address the critical needs of the beneficiaries. Mr. Ameerali said “It is not uncommon for the patient to break into tears of relief through this simple act of the home visit. At MKAC we believe in the importance of the “hand on the shoulder” approach and providing assurance that we are there to help.
One programme which is close to Mr Ameerali’s heart is MKAC’s “Passion 4 Education (P4E) Programme” for the children of kidney patients. Through P4E, primary and secondary-age youth who under-perform in school are encouraged to take a fresh interest in their weak subjects. In addition to providing academic tutoring, Secondary-school age youth are also mentored by a group of caring and dedicated tutors who provide guidance and training in the area of character building, events planning, budgeting and logistics management. Through this training, they gain confidence, have stronger self-esteem and have a hope to plan for the future, despite the challenges of coping with a family member with kidney disease. MKAC believes that this will lead to better academic performance and higher confidence levels.
Each year MKAC plans several social outings for kidney patients, their family members and our staff and volunteers. Such activities include visits to the Singapore Botanic Gardens, the Singapore Flyer, the Gardens by the Bay and even to day trips to Johore, Malacca, Kuala Lumpur and Batam. The idea is to build bonds and trust and comfort levels and to promote friendship and fellowship. Said Mr Ameerali “We want our beneficiaries to see MKAC as one big family which they can feel a sense of belonging to and know that they can always count on one another to look after each other, the be there for one another and to support, protect and care for each other”
For Mr. Ameerali, the highest satisfaction comes upon seeing change. “To see the kidney patient transformed from a lost, nervous person to one who’s confident and who then gives support to other patients. Seeing joy in those we have placed in jobs is really what MKAC is about.
Looking ahead, Ameerali Abdeali would like to see MKAC building its Befriender network so it can offer more home visits to work with all its patients, and being able to have the kind of centre that could be running activities and programmes every day – programmes always that can make a real difference in the lives of the kidney patients.