The entire world is caught in the grip of the COVID-19. India, in particular, has been caught completely unawares. Every available resource, medical or otherwise, is being diverted towards dealing with the COVID-19 crisis, leaving patients with life threatening diseases, patients on life-saving drugs, and patients who need regular treatment for survival sidelined. The recent lockdown and curfew in some areas has dealt a severe blow to the already overburdened medical and administrative infrastructure.
Caught in the midst of this chaos, kidney patients are an anxious lot. While tapping every available resource to tackle the immediate issues at hand, it’s a desperate call to the government machinery to solve their issues, while having to themselves deal with their already fragile health condition.
Every Chronic Kidney Disease (CKD) patient requires dialysis once to three times a week, depending on his or her condition, which is mandatory for his or her survival. Manjit Singh Bali, a dialysis patient living in Jammu, informs us that his dialysis centre is understaffed, and with insufficient medical supplies, patients are being denied the required quality and quantity of dialysis. He fears the dialysis center itself is headed towards closure if the situation does not improve. The situation is no different in other centres as well, where patients are forced to miss dialysis or undergo the procedure for less than the required time. Hazmat suits or sterilised clothes are not being provided to the staff, compromising the patients’ already low immunity. In addition, consumables essential for the dialysis procedure are imported. With the lockdown, patients face an uncertain future as the available supplies might not last long.
The travel restrictions in effect as a result of the lockdown, and the absence of public transportation, has made it difficult for patients to reach their dialysis centres. For patients living in rural areas, long distance travel to their centres is nearly impossible, forcing them to forego this much needed life-saving procedure.
There is a lack of adequate understanding and support from the officials regarding the requirements of kidney patients. Some state governments have announced the provision of ambulance services to pick up and drop off patients, but this facility requires a wider reach. Volunteers of the Kidney Warriors Foundation (KWF), who are patients themselves, have been working and coordinating with their respective state administrations in mobilising support by obtaining travel clearance letters for patients from hospitals and law-enforcement organisations. They have also been trying to get larger centers to accommodate patients from smaller and poorly equipped centers.
For post-transplant patients, the greatest challenge in the present situation is in procuring their much needed immunosuppressive medicines. Even a few regular suppliers have expressed their inability to provide medicines to long-standing customers. KWF is coordinating with pharmacies and pharmaceutical companies to ensure the medicines required by the patients are delivered. However, these measures are grossly inadequate in meeting the requirements of the large numbers of patients in far flung corners of the country. KWF receives several emergency calls and messages from panic-stricken patients whose stocks are about to run out and who do not know how to replenish them. Doctors and volunteers in the group are going out of their way to provide whatever support they can.
The government, while dealing with all other issues, should also take immediate measures to ensure adequate facilities for the treatment of these kidney patients. While the announcement of three months’ supply of immunosuppressant medicines to organ transplant recipients is a huge step in this direction, a lot more still remains to be done. With finances taking a hit during the lockdown, a concession on the dialysis charges, and prices of medications, will be a welcome relief for the already cash-strapped patients. Medicines, considered as essential items, could be supplied to the homes of patients, while arrangements for mobile dialysis units could be made to ensure treatment of patients living in areas where access to dialysis centers is an issue. Ensuring adequate stocks of materials required by dialysis units will also go a long way in putting the lives of patients at ease.
Reni George is a former teacher and kidney warrior. Rita Patnaik has over 30 years post-transplant. The Kidney Warriors Foundation is India’s largest kidney patient support organisation.
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