Vivekanand Jha, Executive Director, George Institute for Global Health India, Professor of Nephrology, University of Oxford and President, International Society of Nephrology discusses the challenges in providing universal dialysis in India with reference to the recent announcement of adding peritoneal dialysis in the Pradhan Mantri National Dialysis Programme
Between the same day last week and today, between 4,325 and 5,300 Indians developed advanced kidney failure. Most of them would die soon because either they cannot access or afford dialysis, a life-saving treatment. In developed countries, access to dialysis is considered a right. Professional societies and guideline groups consider it unethical if a suitable patient is denied dialysis because of resource limitations. In their book ‘Courage to fail’, Fox and Swayze note that access to dialysis for patients with advanced kidney failure has become the benchmark for societal willingness to pay for medical care.
All this started in 1972, when the US Congress amended the Medicare law to allow individuals with end-stage kidney failure to access dialysis. Using similar imperative, governments around the world set up dialysis facilities and reformed reimbursement rules to allow their citizen to receive dialysis. A survey carried out by the International Society of Nephrology in 2017 found that dialysis was available in all of 162 countries that responded to the survey.
Long-term dialysis is expensive. In a case study explaining priority setting in healthcare decision making, the World Health Organisation uses dialysis as an exemplar of the most cost-ineffective treatment, suggesting it should not be prioritised by health systems that want to maximise the utility of limited funds.
When people learn that dialysis is available, however – the instinct is to get it, even if the costs are beyond their means. This leads to families spending beyond their means and incurring catastrophic healthcare expenditure. About 19 crore people in low-middle income countries spend more than they can afford to every year on kidney failure, a number larger than that for any other disease condition. In India, the proportion of people who experience catastrophic healthcare expenditure on dialysis exceeds 90 per cent. Over two-thirds of those who start, drop off within the first six months. The situation is even more dire in Sub-Saharan African countries: just one out of every 100 patients who start dialysis will continue it after a year.
An important part of the UN Sustainable Development Goals is financial risk protection. Hence it makes sense for governments improve access to an expensive therapy like dialysis for their populations, since the most disadvantaged sections of the society is disproportionately affected. Creating a safety net to protect the worst-off and most vulnerable is the duty of the government.
The next question that governments need to tackle is find an equitable, cost effective and socially acceptable way to provide dialysis.
Dialysis comes in two flavours – haemodialysis and peritoneal dialysis. In haemodialysis, patients go to a dialysis facility two or three times a week, get hooked to a dialysis machine and undergo a 4-5 hour session of cleaning of blood each time. Setting up haemodialysis centre requires capital investment on building, dialysis machines, water purification plant, and employing trained manpower. Dialysis centres are typically concentrated in urban locations, so patients living in remote locations must travel variable distances, often with a caregiver, adding costs and resulting is loss of productivity and wages.
Peritoneal dialysis is a home-based therapy, involves 3-4 daily dialysis exchanges of fluid in patient’s belly, each lasting 15-20 minutes. PD needs the patient or a caregiver to learn a simple technique and does not require any equipment or skilled personnel, making it simpler to implement, especially in remote locations.
For most patients, both forms of dialysis provide equally good outcomes. Crucially, however, peritoneal dialysis costs much less to the healthcare system, and provides a better quality of life to a vast majority of patients. Therefore, governments around the prioritise peritoneal dialysis to various degrees as the central instrument for universal dialysis coverage.
The Indian government announced the Pradhan Mantri National Dialysis Programme in 2016, but the focus was entirely on haemodialysis: 8-station dialysis facilities were envisaged for each district, meaning there would be 5,504 dialysis stations in the 688 districts. Even if all stations run at full capacity, they can cater for less than 50,000 patients. If we assume that about half of all new patients with kidney failure will be eligible for this scheme, about 15,000 stations will be needed to accommodate patients just in the first year of the scheme. As new patients get added in subsequent years, the demand will rise, to an expected five times the number in the first year before an equilibrium is reached between those entering and exiting the programme. This is clearly not sustainable.
Recognises the need to develop peritoneal dialysis to meet this large gap, the government recently announced an enabling provision to include peritoneal dialysis in the Pradhan Mantri National Dialysis Programme. The important question is – what will make it work? Peritoneal Dialysis programmes are developed around nurses rather than doctors, which lends itself to scale. Nurse-led teams need to be trained in supporting patients on PD in their homes. This can be achieved quickly through decision support systems based on standardised protocols and remote monitoring technologies. Doctors will be needed only for critical decisions like when to start dialysis, inserting the dialysis catheter, writing prescription and managing complication. Community health workers can visit patients in their homes and determine whether the therapy is progressing as expected using check lists.
Reforms will be are needed in financing and reimbursement. It is hard to imagine why should a bag of salt and sugar solution be so expensive. Other countries have shown that local manufacturing dramatically brings down the cost of bags. We need our famed Indian innovators to find a cheaper way of manufacturing these solutions.
Reform will also be needed is in the way treating teams are reimbursed. Nephrologists have an incentive to prefer haemodialysis because reimbursement is linked to the number of session of dialysis. For peritoneal dialysis, they only get paid for a consultation, which may be once a month or even less frequently. This perverse incentive favouring haemodialysis needs to be removed: teams (including nephrologist) should receive the same reimbursement for taking care of a patient on dialysis whose treatment costs are funded by the state, irrespective of the modality of dialysis. This is the prevalent practice in many countries, and was adopted recently even by the US, the last holdout amongst the countries with large dialysis populations. This has led to a growth in the number of PD patients in the US.
Success is only possible if the treatment is provided according to globally acceptable quality standards and meets with expectations of patients and healthcare providers. Reporting of quality parameters and outcomes including patient satisfaction must take place through registries. This information should be used for quality improvement. Setting up registries requires some initial investment and discipline, but pay back several folds through improved outcomes and reduced spending on complications. In Australia, each dollar of investment in registry has yielded $7 of benefits.
While we develop dialysis, other aspects of care of end stage kidney failure must not be neglected. Government must enable access to kidney transplant, by far the best treatment for suitable patients via reimbursement reforms and streamlining of deceased donation programmes. We also need to develop supportive or palliative care services for patients who do not stand to have any meaningful gains in their length or quality of life by dialysis, especially the very old, those with multiple co-existing diseases that limit the lifespan or quality of life. In Australia and Canada, every other new eligible patient chooses not to start dialysis because it is considered to be potentially ineffective. In addition to service availability, this requires change in mindset of physicians typically trained to provide curative services who believe not offering an available treatment is an admission of defeat.
In the end, we must invest on prevention, the only viable long-term solution to stem the growing burden of kidney diseases in India. Effective prevention options are available, we need reforms in our healthcare system to make sure that these options can be taken to people where they live, and reach the vulnerable and the marginalised.