Bhutan Kidney Foundation
Tashi Namgay was 21 when he first realised his eyesight was becoming poor and he fell sick. He was not sure why. He decided to check his eyes from an optical in Thimphu town and found that none of the power glasses was fit for his eyes. He was advised to visit hospital. It was then found out that he was suffering from chronic kidney failure (CKD).
“The doctors just said how can a young man get such disease, and I felt something cold inside my heart,” Tashi Namgay said. “It was much later when I was admitted in the hospital that a doctor told my mother about the CKD.”
Then the real struggle began. He was kept on dialysis for more than two months. He had to arrange a potential donor from outside. It was not easy. His aunt Dema managed to arrange a donor. Kidney transplant was a success in 2006 at Christian Medical College Hospital in Vellore, India.
“I realised then that other people would also be suffering like me. I wanted to do something,” said Tashi Namgay. He decided he should start a group that would help people who are going through such problems. Bhutan Kidney Foundation was so born.
There were challenges, of course. He has to go look for kidney transplant recipients. He managed to find about 22 of them who all supported his idea.
Tashi Namgay formed a group called Kidney Transplant and Dialysis Support Group in 2007. With support and guidance from His Majesty’s Secretariat, the group today is a registered Civil Society Organisation (CSO).
The foundation focuses mainly on public education and awareness for prevention of kidney-related diseases in the country. It also tries to promote well-being of patients by ensuring that they get all the required care and services.
Tashi Namgay, the executive director of the foundation, said the foundation has many challenges, especially in terms of funding. “When a patient is referred to India, there is a financial implication on the family and most of the patients are from rural area. But this disease is preventable and this is where we want to focus on – prevention – and help government in terms of expenditure.”
From eight first cases in 1998, today there are more than 100 patients on dialysis in three hospitals of Thimphu, Gelephu and Mongar. For every transplant, the health ministry spends about Nu 2.5 million. The patients are referred to Christian Medical College Hospital and Medica Super-Speciality Hospital in India.
The foundation has conducted several nation-wide advocacy programmes. The foundation acts as an agent to advocate how important the kidney is and reach out to as many people as possible.
“We’re also working on ‘kidney help bus’ project to conduct various health checkups, advocate with material kits,” said Tashi Namgay.
The foundation helps patients and their attendants stay at Kidney Guest House in Thimphu, especially those who do not have relatives or are helpless. The members also help them understand the dialysis process and help look for donors.
“We come across people who want to sell their kidney for the want of money to buy car, land, pay loan or to start a business. But that is illegal,” Tashi Namgay said. “While parents are here, we try to help their children attend school by supplying stationery, fees and uniforms based on cases since some come from a very poor background.”
To ease the patients’ problems, foundation’s programme officer, Karma Tobgay, said that through their network for fund, they also supply rations, groceries, toiletries and seasonal requirements every month. Individuals also make donations.
“We also encourage those with skills to make bamboo and plastic baskets as a part of activities and help them sell,” he said. “We try to bridge sponsors or donors and patient.”
The foundation has spent over Nu 400,000 through patient support group and more than Nu 500,000 with the help from supporters and partners.
There are patients who have been living at a guesthouse for more than five years. One such patient is 46-year-old Yeshi Tshering. He is still looking for the donor while he goes under dialysis everyday.
“I am so thankful that I have a place to live here and don’t have to burden my wife and children. I weave baskets and send money to my wife because I know she is suffering too trying to feed our three children.”
Although expenses are born by the government, the living standard is high in India where the daily allowance is not enough for the people, Tashi Namgay said.
The foundation issues an original copy of clearance, which allows a person to seek donations from people with set target of collection.
“Once they meet the target, they inform us and they shouldn’t seek donation more than is targeted. We also make them issue receipt, which has tax exemption space for the donor. That is why it is important donors should always make sure they check all these things when someone approaches for donation,” Tashi Namgay said.
The foundation today depends solely on donations, monthly and yearly contributions from the members from as far as from USA and Australia. Recently, the foundation received Nu 600,000. Anyone can donate to the foundation anytime on their website.
“As of now we have about Nu 1.7 million,” Tashi Namgay said. “Our idea is to help people from our heart.”
By being the voice of all kidney patients, we plan to ensure consistent healthcare services for Bhutan’s renal patients by keeping in constant touch with relevant agencies and stakeholders; explore fund sources within and outside of our country so to assist needy patients, and, in collaboration with experts, coordinate research on why renal failure cases is rampant in Bhutan. Furthermore, all kidney patients shall be provided with necessary counseling in various areas: from dietary advises to physical exercise, mental counseling to protection of chronic kidney patients from all sorts of discrimination in society.
A decade from now, since its date of inception as Bhutan Kidney Foundation, we will strive relentlessly to support and improve health conditions of all pre-transplant and post-transplant kidney patients in Bhutan so that each individual will contribute actively to nurturing of Gross National Happiness. We will also leave no stone unturned in protecting healthy people from being affected by kidney related diseases in near future.
To promote overall well-being of kidney patients in Bhutan.
To raise awareness among general public on kidney related diseases in coordination with relevant agencies and stakeholders.
To ensure all kidney patients have easy access to affordable care and services.
To raise funds and facilitate underprivileged and needy patients to undergo transplant even though RGoB currently bears the entire medical costs besides other financial assistance.
To support establishment of renal and other organ transplantation programmes in Bhutan in near future.
To encourage, promote and facilitate legal organ donations.
To provide necessary support and services to other organ-related patients as well.
To explore international funds amongst health supporting organizations around the globe for the purposes of carrying out research on causes of rampant kidney failures in Bhutan so that in near future, the disease may be contained.
With support from Helvetas Swiss Intercooperation and Bhutan Centre for Media and Democracy (BCMD)
Yangchen C Rinzin