India carries a significant burden of Sickle Cell Disease (SCD), with Chhattisgarh among the states most affected. SCD is a hereditary blood disorder. This condition leads to the production of defective hemoglobin, resulting in abnormally shaped red blood cells. These cells break down prematurely—surviving only 10 to 20 days instead of the usual 120—causing severe anemia and other complications.
Sickle cell anemia is a disease that a person is born with, passed down from their parents. In this condition, red blood cells, which normally look round and soft, become hard and curved, shaped like a crescent moon or a banana. These sickle-shaped cells don’t move smoothly through the blood vessels and can block the flow, causing pain, swelling, and damage to organs. People with this condition often feel weak, get tired easily, and may fall sick more often. It mostly affects people from certain tribal or ethnic communities.
Individuals inheriting two faulty genes (SS) develop the disease, while those with a single gene (AS) are carriers and typically remain asymptomatic. To combat this growing public health challenge, Sangwari, a non-profit organization based in Chhattisgarh, has been working closely with the government to strengthen healthcare systems and improve support for people affected by sickle cell disease. I lead this initiative in Jashpur district.
Experiencing on-ground realities
Over the past year, as I immersed myself in the local healthcare landscape, my team and I have enrolled around 400 sickle cell patients. When I first began working here, I observed that a large number of patients with sickle cell disease (SCD) were being admitted after developing life-threatening anaemia or suffering from acute pain crises. Treatment of chronic illnesses can affect the patient's psychological, social, and economic well-being as well as biological status. Many patients have had suicidal thoughts, and some parents lost hope in life, seeing their child battle illness.
Among the many cases I encountered, one that deeply moved me was that of Tanu Bhagat (name changed), a 14-year-old girl from the Urao tribal community. She was hospitalized with one of her seasonal pain crises, more frequent in monsoon and winter. Although previously been given painkillers, her symptoms persisted. Due to her condition, she missed school repeatedly and couldn’t appear for exams. The chronic pain and hospital stays had robbed her of a normal childhood and put her education at risk.
Mental and Emotional Care: A Turning Point
Since the age of four, Tanu had been experiencing intense pain episodes that left her in agony. Her father, Vinod, often carried her across as she could not walk. The family toiled in search of relief. When she was diagnosed with sickle cell disease at the age of 5 in a hospital in Ranchi, the doctors prescribed only folic acid, and she had been consuming it on a daily basis.
Whenever she had a pain crisis, she visited the community health center in her block, which was close to her house, but the treatment for pain crises or the facility for blood transfusion was not available there. The doctor referred her to the district hospital for a blood transfusion. Majority of doctors only suggested blood transfusion for pain relief.
When my team met her for the first time during a hospital admission on June 14, 2024, she was admitted for a pain crisis. She was overwhelmed by pain and was unable to walk. Yet, beyond her suffering, the team noticed resilience and the will to fight. After the blood transfusion, she found some relief from her pain. That was when we suggested adding hydroxyurea to her treatment plan.
The game changer: Hydroxyurea
While treatment of patients with SCD remains challenging, some medical treatments and vaccines have changed the outcomes in SCD over the last decades. A medicine called Hydroxyurea reduces the risk of pain and other crises and the need for blood transfusion by more than 50% and increases life expectancy.
Worldwide, this has become the standard of care for treating patients with sickle cell disease. Patients themselves speak about the improvement in their quality of life and the relief from the chronic pain that affects their daily lives.
Although hydroxyurea capsules were available at all levels – primary health centers, community health centers, and district hospitals – in Jashpur, their use was alarmingly low. Fewer than 1,500 capsules were being issued each month at the district hospital. Despite being the more cost-effective and low-risk option, hydroxyurea was being used less frequently than blood transfusions.
It was noted that doctors were uncomfortable using it as it was associated with the treatment of cancers in the past. To address this challenge, Sangwari conducted training of doctors in prescribing hydroxyurea. To ensure continuity of care, it collaborated with the district health services and made a chronic care booklet for SCD patients. The team enrolled patients in the sickle cell disease registry. It ensures timely check-ups and provides counseling. With this sustained support and encouragement, a new chapter in her recovery began.
A Powerful Transformation
One year later, Tanu’s life has changed dramatically. Her pain episodes have greatly reduced. She now walks to school every day—a milestone that once felt impossible. Her cheerful spirit has returned, and her father no longer needs to carry her to the hospital. Instead, he watches her walk independently, filled with hope and dignity.
Moreover, the consumption of hydroxyurea is now more than 10,000 capsules per month in the district, a six-fold increase. Doctors are now prescribing hydroxyurea with the correct dose, and blood transfusion rates have gone down. Many children like Tanu are going to school and with low absentee rates in the class.
Health System Strengthening: Building a Foundation of Care
Beyond individual stories, we focused on systemic change. To provide consistent and quality care for SCD patients, Community Health Centers (CHCs) and Primary Health Centers (PHCs) must be fully functional. Regular training for doctors is essential so they can manage cases better at the local level and reduce avoidable referrals to higher-tier hospitals. We are capacity building for healthcare workers – doctors, nurses, paramedical staff, and all frontline workers. However, many PHCs lack even basic diagnostic tools like Complete Blood Count (CBC) machines, and both CHCs and district hospitals face a shortage of specialists and necessary equipment.
Coordinated Care and Community Support
There is a critical need for care coordination across all levels of healthcare – not only for SCD but for other chronic diseases . In tribal districts like Jashpur, patients often face significant barriers due to the absence of public transportation. With only costly private buses available, many families struggle to access care. The Sangwari team helps bridge this gap by offering financial aid, counseling, and continuous support, ensuring that patients receive both medical and emotional care.
To increase awareness and build capacity for self-care, we conduct patient peer support group meetings and community meetings. This is a platform where patients can share their life struggles and discuss coping mechanisms. In peer support meetings, we also invite doctors and other healthcare workers to understand the different context of challenges faced by patients, especially in rural & tribal areas. In these meetings, my team and I also discuss various services available for patients in the government health system.
For the past year, we have been conducting monthly visits in health centres across the eight blocks of Jashpur. We inform them of the visit a day in advance, so patients can walk to their nearest CHC. We support doctors and other paramedical staff, as well as help patients with regular check-ups. Since we initiated this form of intervention a year ago, we have found slow but sure behavioural change among patients and doctors. Patients themselves ask about the medication and monthly follow-up dates by teleconsultation. As a result, we have more than 70 % monthly follow-up in the public facilities.
Equity in Action & Social Determinants of Health
This isn’t just a story of medical progress—it’s a powerful reminder of what can be accomplished when healthcare systems are built with empathy, inclusiveness, and a sense of justice. Tanu’s journey symbolizes what becomes possible when compassion drives care, and when services are tailored to the realities of people's lives.
However, achieving true health equity goes far beyond clinical interventions. Social determinants of health—such as income, education, housing, transportation, and access to nutritious food—play a critical role in shaping health outcomes. In many tribal and underserved regions, these foundational factors are deeply inadequate. Poverty is widespread, limiting access to even the most basic health services. Educational opportunities are minimal, affecting health literacy and the ability to make informed decisions.
The lack of a reliable public transportation system creates another major barrier. People often have to travel long distances on foot or depend on irregular and costly private transport to reach health facilities, delaying diagnosis and treatment. Poor housing conditions, unsafe drinking water, and food insecurity further compound health risks, making recovery and disease management much harder.
These are not just logistical or infrastructure issues—they are human rights concerns. Addressing them requires a multi-sectoral approach that includes investment in community development, livelihood support, and infrastructure, all anchored in cultural sensitivity. Only when we address these deeper social realities can we ensure that health equity is not a distant ideal but a lived experience for all.
Edited by Radhikaa Sharma
Image by Gayatri
