While getting clinical trials down in western countries seems the road forward, we have found great hesitancy for our people in India to get experimental. To make patients in the kidney community understand the true value of such studies, a special session was held with Dr Arvind Canchi.
Dr Canchi meticulously built the narrative on how medicines, treatments and protocols need to be studied to understand their impact on patients. Trials help in development of new treatments and diagnostic tests, it allows for testing and monitoring of a large number of people to understand effect of treatments introduced, whether these lead to any improvement in health, including offering protection to people against serious infections by introducing vaccinations. Every treatment or medicine introduced needs well conceived clinical studies.
His presentation expressed tangible needs of research and trials, making an impact on patients for seeking more information from their nephrologists. Embarking on benefits to patients he explained:
- Patients can get inaccessible and expensive medications, free of cost
- Patients in a Trial get an extra attention as patients are not only close to the clinical staff but even with the doctors involved in the research
- There’s a regular communication with the research team so there’s more attention to the patients disease process
- Some patients will be administered a potentially better therapy as in a oral form instead of an injection
Patients should be kept informed about the research.
Trials for patients with kidney disease faces “Renalism” (Glenn Chertaw et al)
It is observed kidney patients were consumed by fear of contrast nephrotoxity because of renal angiography, so they never undertook trials. In the context of coronary angiography though they were eligible for the cardiac catheterization many didn’t get treated. Only 50% cases got treated and had twice the mortality of patients with intact GFR.
Long term follow-up of Cyclophosphamide with steroids vs tacrolimus with steroid for primary membranous nephropathy – by Dr. Raja Ramachandran and Co, PGI Chandigarh which showed better results for Cyclophosphamide with steroids as compared to tacrolimus with steroid for anti-proteineric resistance. Relapse free remission rates were superior in Cyclophosphamide treatments.
Many clinical trials were ongoing in various parts of the country, in prominent medical colleges and institutions. He added that interested patients must talk to their doctors on their willingness to be part on clinical studies.
Addressing kidney patients’ much-debated topic on need and risks of biopsy Dr Canchi put the concern to rest with some interesting data.
Of a total of 118, 064 biopsies conducted in patients between ages 30-79 years (during January 1983 to March 2018:
- Complication rates included perinephric hematoma (renal tumor/cancers) in 11% of biopsies, macroscopic hematuria (blood visible in blood) in 3.5%, bleeding needing blood transfusion was in 1.6% and interventions to stop bleeding was in 0.3% (1 in 300 biopsies)
- Death attributed to native kidney biopsy was rare, occurring in 0.6% of all biopsies
- Complications were more in hospitalized cases and AKI.
Dr Canchi touched upon a study done by Dr Vivekanand Jha, through George Institute that highlighted psychological and financial aspects of patients who received treatments. It showed the plight of kidney patients and family. These studies also help GOI arrive at some logical decisions for improving costs of treatments and medicines.
KWF associates with IgAN Foundation USA to share data for research
Kidney Warriors Foundation went into an informal association with IgA Nephropathy Foundation, USA to help them get patients recruited for their research. It is our role and responsibility to assist and encourage all such studies that are being conducted with ethical process.