COVID-19 has changed the world we live in. Even those who may not have been infected have to contend with several changes in their lifestyle. While the changes during the lockdowns in several parts of the world are severe, there are enough indications that our lives are going to very different from what we were used to until a few months back.
For those already dealing with a chronic condition, COVID-19 has made things worse. Cancellations have impacted chemotherapy, surgeries have been delayed in most places, and elective procedures have been put off indefinitely. Dialysis patients are also having to deal with several problems in the wake of this global pandemic.
Dialysis patients are at an increased risk of acquiring this infection as their immune systems are compromised due to their primary kidney disease. If infected, the prognosis is worse than the healthy population. This apart, there are several problems in their day to day life that make this pandemic all the more stressful for dialysis patients.
1. Access to Dialysis Treatments
Many dialysis centres have shut down in countries with severe COVID-19 outbreaks. This could be due to a variety of reasons.
Some governments have taken over hospitals and designated them as “COVID-19 Centres” where only COVID-19 positive patients would be treated. Scant regard has been shown to the fate of the dialysis patients. The fact that dialysis patients need this treatment several times a week to survive seems to have been completely forgotten. Some dialysis providers have been able to make alternate treatment arrangements on an emergency basis, though in less than ideal locations. Sadly, many providers seem unable to provide their usual dialysis operations, leaving patients without options and needing to fend for themselves. These patients have tried going to other dialysis centres to request this life-sustaining treatment, but centres have been reluctant to take them. There is always the risk that incoming patients may be infected with the novel coronavirus, which would put their existing patients and the dialysis staff at risk.
Some dialysis centres have shut down as one of their patients has become infected with COVID-19. Government authorities can step in and request a centre to be shut down, but dialysis centres can also voluntarily shut down because they are worried about infection risks which might affect their centre. Again, the patients have to go from pillar to post to get themselves accommodated at other dialysis centres.
Some dialysis centres have experienced staff resignations, or absconding from work, due to the fear of getting infected with COVID-19. This has put enormous strain on their operations.
Due to these reasons, many centres have advised their patients to come for dialysis treatments less often. Some have reduced the duration of the treatment. All this has caused tremendous hardships and clinical complications for dialysis patients around the world.
2. Transportation to Dialysis Centre
Several countries have completely closed public transport systems. This has made it very difficult for patients to get to dialysis centres, even if they were functioning as usual. People who relied on public transport have been forced to look for dialysis centres closer home. Those who could not find such centres have been forced to miss dialysis treatments – causing their deaths.
3. Risk of infection at Dialysis Centres
Dialysis centres often find it difficult to ensure ‘social distancing’. While guidelines have been issued to space apart dialysis stations and chairs in waiting areas, many dialysis centres in different parts of the world simply cannot accommodate this as centres are already cramped and have many treatment beds within small areas. This causes patients treated in such dialysis centres to be at increased risk of infection should a COVID-19 positive patient receive dialysis there as well. Within the dialysis industry, there have been anecdotal reports of patient to patient COVID-19 infection transmitted in the dialysis centre setting.
4. Loss of income due to “lockdowns”
Many dialysis patients have to pay out of pocket for their dialysis treatments. Mandated lockdowns currently enforced in about two-thirds of the world has caused the income of many people around the world to decline or completely disappear. This makes it very difficult for people who need to pay for dialysis treatments from personal savings, and which is not always possible. Self-funded dialysis patients may need to find charities with funds for such purposes and if they are unable to do so, simply have to withdraw from treatment and die.
5. Investigations for Dialysis Care: Laboratories Not Fully Operational
All dialysis patients undergo a clinical workup before and sometimes after dialysis, beginning with a dialysis prescription and continuing with monitoring of their pre-dialysis outcomes. Many laboratories that conduct medical investigations for prescribing dialysis modalities and treatment regimes have been rendered non-functional or partially functional. This means that dialysis patients are unable to get their investigations – a very important part of their treatment that dictates changes that might need to be made to their prescription.
While these problems are enormous, often with no solution available, it is important that dialysis patients exercise adequate precautions similarly advised to the general public: washing hands with soap several times a day, wearing a mask when leaving the house, staying at home as much as possible, and staying away from sick people and from crowds.
Some very important things can be done by various stakeholders to alleviate the problems faced by dialysis patients:
1. Make alternate arrangements for dialysis treatment for patients when a dialysis centre is shut down
2. Provide limited public transport for those who need to visit a hospital for medical reasons
3. Have one designated COVID-19 dialysis centre in each city that will dialyse all COVID-19 positive dialysis patients. Those suspected to have COVID-19 can be taken either in the last shift of the regular dialysis centre or the COVID-19 centre.
4. Provide grants or some other form of financial assistance for those affected by the loss of income due to lockdowns so that their dialysis and supportive medical treatment can continue.
5. Help laboratories to function as usual by ensuring that the lab and its personnel are exempted from the lockdown.
COVID-19 is an unprecedented crisis the world is facing today. It is probably unwise to blame governments and other authorities for acting in the manner they do. No one could have been prepared for a pandemic of this magnitude. It would be instructive to work in a collaborative manner and involve all the stakeholders in trying to alleviate the problems faced by these vulnerable sections of humanity. Many lives have been needlessly lost. We can, at the very least, try to save the rest.
Author Kamal D Shah has been on dialysis for the last 22 years. He is founder of Atypical HUS India, and co-founder of NephroPlus Dialysis Centres, India’s largest Dialysis Centre Network. He is one of the directors of aHUS Alliance Global Action and his recent collaboration includes the KDIGO publication on Increasing Access to Integrated ESKD Care.
Kamal D Shah has written the 4 part Dialysis Diaries series on topics important to patients: Dialysis: An Overview, Long-Term Complications, Dialysis & Heart Problems, and Dialysis: Diet & Fluid Restrictions. Click HERE to read the aHUS Alliance interview with him. Click HERE to read blogs written by Kamal D Shah.