Government’s insurance scheme stays immune to rare diseases

Rare diseases are one of the major challenges in the health sector, exerting a public health burden depending on the severity of their symptoms and also the number of people affected. Though it is important to adopt and implement plans and strategies designed to adequately address the comprehensive needs of patients with rare diseases, there are still many gaps in Tamil Nadu’s policy landscape. While the State Health Department boasts of a very efficient insurance scheme because of the coverage offered under Chief Minister’s Comprehensive Health Insurance Scheme (CMCHIS), many rare diseases and cancer medications are not covered under it. 

Without the support from the government scheme, patients suffering from such diseases are unable to bear even the basic expenses of travel and accommodation on their own during the period of the treatment. More often than not, they have to depend on non-governmental organisations (NGOs) to sponsor the treatment and basic expenses. Further, due to the lack of medical staff and necessary facilities, many government hospitals, too, have to fall back either on NGOs or the private sector.

Delayed diagnoses, limited access to resources, and absence of specific therapies often preclude patients from receiving proper and timely care. As even a brief delay in diagnosis can have profound effects on the patient, experts advise that the government should include more treatments, procedures and medicines into the CMCHIS.

No/minimal care for rare cancers 

Bhavani (4) from Tiruchy had a cancerous tumour in the eye and underwent surgery at the Institute of Child Health (ICH) in Egmore. The surgery was done under the CMCHIS scheme and her left eye was removed, and she required an eye implant after the surgery. But she is unable to receive the eye implant, as it is not covered under the government scheme.

Similarly, Vijay, 37-year-old with a rare tumour in the brain, was initially treated at Rajiv Gandhi Government General Hospital (RGGGH). However, as the cost of the surgery and follow up treatment were not covered under CMCHIS, his relatives had to shift him to the Adyar Cancer Institute. There, he could receive treatment that would not cure his tumour but would at least help delay the inevitable.

Various types of cancer such as leukaemia, cancerous brain tumours, tumours in the eye and rare cancers of the bone are not covered under the CMCHIS. Patients suffering from these have to either be at the mercy of NGOs or suffer hopelessly.

Though the CMCHIS is said to cover diagnostic procedures leading to surgery/medical  management under the insurance scheme, many advanced procedures for diagnosis of rare cancers such as PET/CT scan, radiotherapy and other procedures have only minimal coverage, or nothing at all.

Many government hospitals, including ICH and Government Kilpauk Medical College Hospital, lack PET/CT scan, which is commonly required for the diagnosis of various types of cancer. Under the guidelines of CMCHIS, the hospital holds the responsibility to treat post-operative complication within 30 days. Package for an extended stay is given only for polytrauma cases. This clearly is not enough. Doctors at the government hospitals said that in the case of cancer and several rare diseases, the treatment for post-operative complications and side-effects due to chemotherapy lasts for more than a month. “The hospital lacks facilities to treat patients who require radiotherapy. Though we collaborate with NGOs to ensure treatment to all, many medications are unavailable at the hospital. There are numerous medicines for chemotherapy that are not covered under CMCHIS. It will benefit the patients greatly if the treatments are incorporated under the scheme,” said Dr Aruna Rajendran, haematology, ICH. She added that PET scan and certain blood tests are necessary to check if it is an actively proliferating cancer. But most of them are not covered under the government scheme.

At the mercy of NGOs 

As per CMCHIS, charges for bed in general wards, nursing and boarding, surgeons, anaesthetists, medical practitioners, consultants, blood, anaesthesia, oxygen, OT, prosthetic devices, implants X-ray, diagnostic tests, food, transport, etc. are to be covered. However, the transport cost is restricted to a maximum of Rs 1,000 per year, which is not enough even for patients from Chennai.

“There are patients who come to ICH from other districts and we give a reimbursement of Rs 5,000 per day for travel alone. The cost comes to about Rs 1.5 lakh per month. If not for the NGOs, the patients will either have to stop the treatment or bear expenses on their own. NGOs help us arrange the accommodation for patients and their attendee on producing the admission ticket at the accommodation centres for free,” said Dr R Velmurugan, head of the department, pediatric surgery at ICH.

Doctors at RGGGH said that there was a need to establish homes away from home for the patients who have a prolonged stay at the hospital for the tenure of the treatment. 

Apart from the lack of coverage of the treatment and diagnostic procedures for various rare kinds of diseases under CMCHIS and the unavailability of basic amenities, the government hospitals also struggle due to lack of many advanced treatment facilities and inadequate staff.

“There is a need for nutritionists, psychologists, nurses and paramedics trained in oncology, genetic studies, transplants, etc. We used to hire specially trained nurses from a private recruitment agency. But it was stopped, as the Medical Recruitment Board took complete charge of it,” said an oncology consultant at RGGGH.

The doctors at ICH say that despite performing numerous surgeries every day, the hospital does not have a separate surgical block or a bone marrow transplant unit at ICH. “Even the procurement of the drugs for the treatment of various types of rare diseases is delayed because they are not used frequently. Tamil Nadu Medical Services Corporation is responsible for the supply of drugs. But the system and the number of staff have remained the same for many years now, while many advancements have been introduced in the field,” said Dr Velmurugan.