In a panel discussion organized jointly by PatientsEngage and Kidney Warriors Foundation, and moderated by Aparna Mittal of PatientsEngage, Dr. Sanjeev Gulati (Senior nephrologist, and ex-President, Indian Society of Nephrologists), Sireesha P (Public Health Consultant) and Vasundhara Raghavan (CEO, Kidney Warriors Foundation) spoke of the gaps in financial access for treatment of persons with kidney disease and the way forward.
Chronic Kidney Disease or CKD is defined as a progressive kidney condition with irreversible damage. When the kidney function does not improve in 2 months, it is termed CKD. Initially considered rare, CKD is becoming more common, with hospital-based studies showing around 5% prevalence and community estimates nearing 10%. A recent national survey in India suggests a prevalence of up to 30%. The optimal treatment of CKD depends on the stage of the disease, which is divided into five stages based on kidney function percentage. For stages one and two, follow-up every three to six months may suffice. For stages three to five, more frequent follow-up and customized treatment plan is required. Stage five patients will need dialysis and eventual kidney transplantation. The aim of treatment is to arrest the progress of the disease. Drugs such as ACE Inhibitors, ARBs, SGLT2 inhibitors and fenofibrate are effective in reducing the protein leakage and slowing down the disease but are expensive. Sadly, late presentation means increased burden on the healthcare system and overall cost of treatment. Managing co-morbidities esp in patients with end-stage kidney disease due to diabetes requires multiple doctor’s visits, medications and finances to support living with the disease. Awareness on early detection and control can alleviate these burdens by the patient and the healthcare systems.
It is estimated that by the year 2030, India will be the world capital of people with diabetes and CKD, mainly due to diabetic nephropathy. This ia tremendous public health concern. Population-based studies have pointed out that challenges in access to care contribute to over 50% of CKD patients progressed to advanced stages. Annually, approximately 2.2 lakh new patients develop end-stage renal disease, leading to 3.4 crore dialysis sessions, creating financial catastrophes for affected families. Despite the significant burden, the true impact of end-stage renal disease in India remains unknown due to the absence of a comprehensive renal registry. This lack of data hampers understanding health outcomes and estimating financial burdens accurately. Currently, over 90% of patients needing renal replacement therapy in India succumb due to the inability to afford care. Additionally, 60% of those who forego renal replacement therapy cite financial risks as the primary reason. Kidney transplant recipients also face unexpected financial hardships due to limited financial access. Existing financial solutions are insufficient and inaccessible to those in dire need. Emerging digital financial models offer potential solutions, such as zero percent interest loans, health savings accounts, and insurance coverage with premiums paid through earned interest. However, widespread financial literacy remains a challenge among the general public, hindering effective financial access for CKD patients.
Over the past five years, the Kidney Warriors Foundation has aimed to understand and address the needs of kidney patients, particularly focusing on the financial challenges they face. Despite providing support and counsel for physical and medical issues, addressing financial needs has proven to be pivotal in improving their quality of life. The study revealed that insurance coverage is crucial, as medicine costs vary and discounts are inconsistent across regions. Surprisingly, 57% of patients lacked insurance coverage, with out-of-pocket expenses reaching 79.6%. Government insurance schemes often fail to cover critical tests, such as post-transplant tests and biopsies, leading to substantial financial burdens for patients. Additionally, patients undergoing government-sponsored transplants face significant costs for pre-transplant tests. Dialysis expenses, including travel and caregiver costs, are not adequately accounted for, particularly for patients in remote areas accessing government facilities. While certain states like Andhra Pradesh provide financial assistance to dialysis and transplant patients, this support is lacking in many regions. Moreover, challenges persist in accessing discounted rates for immunosuppressant post-transplant, highlighting the need for systemic reforms and increased government and insurance company involvement. Ultimately, improving insurance coverage for middle-class kidney patients can alleviate financial strain, recognizing their importance within society and easing the burdens endured by both patients and their families.
When optimal treatment is not covered, patients face many issues. Firstly, financial constraints often lead patients to delay seeking medical care, resulting in poorer outcomes for CKD. Additionally, limited access to essential treatments such as post-transplant medications and various forms of dialysis further exacerbates health disparities. This situation not only compromises patient health but also tarnishes the reputation of the disease. Moreover, lack of awareness about scientifically validated treatments leads some patients to invest in unscientific and ambiguous therapies, further complicating their condition. Therefore, bridging the knowledge gap and promoting awareness about effective treatments are essential. Additionally, advocating for better access to health insurance is crucial, as it ensures financial coverage for necessary treatments and improves overall healthcare outcomes.
Almost no insurance policies cover outpatient treatment investigations, including crucial tests like biopsies, necessary for early stages of chronic kidney disease. Despite being insured, patients often face denial of coverage for such tests, even when hospitalized. Presenting such data to government agencies, NGOs and Insurances companies will help gather support. Improvement in healthcare will occur only with ease of access, availability and affordability of treatment and diagnostic facilities.
The experience of members when they cannot cover all necessary treatments and investigations is challenging, both for the patient and their family. Encouraging patients to understand the critical importance of essential tests like biopsies, despite cost barriers, is crucial. While some patients seek discounted options at trust centers or government hospitals, the accessibility of such options varies across states. Collating more data from diverse regions and advocating for wider representation is necessary to address these disparities effectively. Moving forward, collaborative advocacy efforts involving healthcare professionals, patient advocacy groups, government agencies, and insurance companies are essential to ensure equitable access to essential kidney disease treatments and investigations.
Way forward
Challenges of both the patient and provider must be addressed in the healthcare ecosystem. Awareness initiatives is one such tool, that must be utilized more by the government if they want to control the rising cases of non-communicable diseases. Quantifiable data from patient groups and research institutions is key to magnify the severity of the problem. Patient groups play a vital role in education and support, potentially collaborating with private entities and government agencies. Creating communities for CKD patients to share experiences and resources is invaluable. Objectives must be clear, whether promoting health literacy, shaping policy, or engaging the private sector for financial solutions. Collaboration with digital platforms can enhance awareness and financial planning. Ultimately, citizen responsibility lies in advocating across various channels to ensure affordable and accessible healthcare for all.
Advocacy is crucial, so that the focus can be diverted from just primary health care to management of chronic conditions like CKD that can affect productivity. Many South American countries with similar or lower GDPs have national CKD programs, showing it's feasible. The focus in India has been more on dialysis than kidney transplants, often due to free or subsidized dialysis programs. However, the government should proactively promote kidney transplants, utilizing funds saved from dialysis for lifelong immunosuppression. Advocacy efforts, like joint initiatives between organizations like the Indian Society of Nephrology (ISN) and patient groups like the Kidney Warriors Foundation, are crucial. Publishing survey data in scientific literature can effectively communicate the economic benefits of such initiatives to the government, promoting a more comprehensive approach to CKD treatment.
Kidney Warriors Foundation is currently exploring corporate social responsibility (CSR) support to pilot a model for insurance coverage. By involving corporates in funding, they aim to present a viable model to the government for potential implementation on a larger scale. Although the initial sample size is limited to 100 people, successful implementation could pave the way for broader initiatives. This public-private partnership is essential for sustainability. In this project, patients will pay a premium and receive financial assistance, instilling a sense of dignity and relief for them and their families. Many patients struggle silently, and goal is to alleviate their financial burden and improve their quality of life.
We require more innovative and inclusive solutions to address the challenges of financial access in healthcare. It's crucial to develop clear and comprehensive models that prioritize the needs of patients and families. These solutions should emphasize dignity and ensure that everyone has access to essential healthcare services. Universal healthcare is not just a demand; it's a fundamental right, and preserving the dignity of individuals should be supreme in our efforts. Financial access goes beyond mere finances; it impacts mental health and the well-being of not just the individual but also their family members. Ensuring that each individual feels productive and appreciated within society is crucial, nurturing a collective sense of belonging for all.
