Kerala needs to support transplant patients for immunosuppressive therapy

The Hindu

7 days ago

Last July, 13-year-old Anushka with severe cardiomyopathy, her heart's pumping capacity reduced to just 18%, was nearly dying at Sree Chitra Tirunal Institute for Medical Sciences and Technology, when a donor heart saved her life. This first paediatric heart transplant at SCTIMST was a much-celebrated event.
A year later, Anushka is doing very well. But the last one year has been marked by anxiety, along with financial and emotional distress for her parents, Ramesh and Vijitha. They had to uproot themselves from their home town at Engandiyoor, Thrissur, to a small rented house in the capital city for her treatment.
Anushka's case is just one example of how life-transforming and positive an experience organ transplant can be, for a patient and his/her family. But the road ahead is tough and scary for the family which is already in dire straits and which has to find close to Rs. 30,000 a month just for life-long immunosuppressive therapy to ensure the survival and best post-transplant outcome for their child
Catastrophic health expenditure and rising out of pocket expenditure on health has been pushing families into impoverishment in Kerala . Post-transplant care is one such catastrophic health expenditure causing much financial distress to many families.
Organ transplants are life-saving and life-transformative but it is just the beginning of a long road ahead, for the patient as well as the family. The high cost of immunosuppressant drugs a patient has to take for a lifetime, post-transplant, is not an affordable proposition to most families.
The State Government has been promoting organ donation and transplantation in a big way since 2012-13 but even a decade later, there is no universal State-wide project which provides immunosuppressants free of cost or takes care of the financial burden incurred by organ transplant recipients for the same.
There have indeed been some isolated initiatives by some district panchayats (Kollam, Ernakulam and Kannur) or NGOs and a token support through Kerala Social Security Mission for transplant patients, but this has not been enough.
Kerala has fairly good survival rates for solid organ transplants, with the five-year valid kidney transplant survival rate pegged at 85.3% and that of liver transplants at 77.3%, according to a 2018 study.
But non-adherence to immunosuppressive therapy because of financial constraints of families is increasingly becoming the single most cause of poor transplant outcome and organ rejection, which is extremely distressing, says Noble Gracious, Executive Director of K-SOTTO.
Shammy Sajeev, a 43-year-old housewife from Changanassery, who underwent a renal transplant two years ago at Alappuzha Government Medical College Hospital is now back at the hospital because her transplanted kidney has failed.
'My father is an auto driver and he had donated one of his kidneys to my mother. We had to spend close to ₹14 lakh for her treatment, transplant and medicines. Her medicines cost about ₹10-15,000 every month. Because of extreme financial hardships, we were unable to buy her medicines for the last four months,' says her son, Abhishek, a Plus Two student, who has temporarily discontinued school now.
The family knew that the immunosuppressants were important but they were in no position to borrow money anymore. Shammy will now have to go back to dialysis till another related donor as well as funds for the transplant can be arranged, he says.
Maintenance immunosuppression drugs with antibacterial, antiviral prophylaxis varies from Rs. 20-30,000 per month in the first year for renal transplant patients, which stabilises to Rs. 8,000- 15,000 per month for subsequent years, for life. For liver transplant patients too, the approximate monthly medicine expenses would be around 15-20,000, according to doctors. The transplant patients would also have to spend another Rs. 10-15,000 per year for the routine check ups and blood tests that they need
'The State will have to think about a comprehensive project to ensure equitable access to free immunosuppressive therapy for those who really need it,' a senior Health official says.
In Kerala, a majority of patients undergoing maintenance haemodialysis have some form of financial assistance or are being subsidised by the Government. But the care needs of a minority which has access to transplants is something the State has to prioritise. Non-adherence to immunosuppressive therapy because of financial barriers resulting in the waste of precious organs is not something that any health system can afford, he says.
A recent national review meeting on organ transplantation activities, jointly by National Organ and Tissue Transplant Organisation and the Union Health Ministry had pointed out that the high cost of immunosuppressant drugs was a significant concern as patients often do not get financial support for drugs beyond the first year.
It had strongly recommended that liver and heart transplantation, including the lifelong cost of immunosuppressants for post-transplant recipients, be comprehensively included under the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana scheme