What do you think are the main challenges?

The most important challenge is the gaps in the public health care system of the country. The largest numbers of patients come from strata of society which relies on the public health system. This system starts at the grassroots level represented by the Anganwadi worker who caters to between 1000-2000 population depending on rural or urban location. These workers do not know lupus. They should be trained in the COPCORD questionnaire to detect inflammatory musculoskeletal symptoms and non-communicable diseases. Strengthening of district hospitals(DH) would enable two-way referral of lupus patients. First towards tertiary care for diagnosis, then back towards DH for maintenance of therapy.

The second challenge is the lack of insurance coverage. While renal diseases are now well supported with public and private support for maintenance hemodialysis, no such cover exists for lupus. Certain states like Telangana do provide support during inpatient services. JIPMER provides free medicines but needs patients to revisit the hospital. These are non-inclusive examples. 

The third challenge is the inadequate number of trained rheumatologists. While training centres are increasing at regular intervals, there is insufficient thought given to how they can be retained at various tiers of the public health system. In the interim, the care of lupus patients can be improved by government support for teleconsult support of DH with specialists from tertiary care. This should include support for a teleconsult network and, an increased manpower budget for medical specialists at tertiary care trained specifically for teleconsults.

What role do socioeconomic factors play?

They are extremely important. The economic burden of maintaining a chronic disease includes direct costs of consults, medicines investigations, and indirect costs of loss of employment not only for the patient but also for supportive family members. Strong family support ensures success, however, economic fatigue often sets in and leads to non-compliance with the overall treatment strategy leading to flares of further morbidity and mortality.

Any Role of digital health tools?

As stated above, if India has to bridge the gap between the number of trained rheumatologists needed to treat and the number available, teleconsult becomes an important tool. Apps developed in local patient-friendly language linked to the rheumatology service primarily directing treatment can help to keep patients engaged with tertiary care. 

Teleconsult network support of DH with specialists from tertiary care. This should include support for a teleconsult network and an increased manpower budget for medical specialists at tertiary care trained specifically for teleconsults.

What are the 3 most important measures to improve outcomes?

1. Adherence to therapy
2. Finding better drugs for severe disease
3. Understanding if the higher mortality rate in India is entirely due to SE factors or if there is some difference between populations in India and abroad.

The author has articulately covered the same topic in a TEDx talk; please click the attached link. (https://www.youtube.com/watch?v=d3LNQqO7nwc)