As a haematologist-oncologist who has spent years treating children and families battling sickle cell disease (SCD) in India, I am haunted by stories like that of an 11-year-old girl—from a tribal community in central India. Born with sickle cell anaemia, she required regular blood transfusions to manage her severe anaemia and prevent life-threatening complications.
Last year, after receiving what should have been a routine transfusion at a local facility, she tested positive for HIV. Her parents, already stretched thin by medical costs and lost wages, now face a dual burden: managing sickle cell crises alongside a new, stigmatised infection acquired through the very treatment meant to save her life.
This is not an isolated tragedy. It underscores a fundamental failure in our healthcare system: the inability to guarantee safe blood for the most vulnerable. On World Sickle Cell Day (June 19), we must confront these realities with urgency and compassion.
Sickle cell disease, a genetic disorder causing red blood cells to deform into a sickle shape, leads to chronic pain, organ damage, infections, and reduced life expectancy. India bears one of the world’s highest burdens, with an estimated 42,000 babies born with SCD annually, predominantly in tribal and marginalised communities where carrier rates can reach 1–35%. In central India, roughly 1 in 86 births is affected, and without proper care, many children do not survive early childhood.
Despite medical advances, profound gaps persist in the care of these patients. Safe blood transfusions remain inconsistent, especially in rural and district-level facilities serving tribal areas, where screening lapses expose children to HIV, hepatitis, and other infections.
Hydroxyurea, the cornerstone therapy for reducing crises and improving survival, is often unavailable, unaffordable, or poorly monitored in primary health centres. Pain management, antibiotics, and supportive care are equally patchy. Most patients in remote areas lack access to haematologists, comprehensive labs, or timely interventions, while primary care physicians struggle with acute crises, and referrals frequently overwhelm under-resourced district hospitals. These gaps disproportionately affect economically disadvantaged families, trapping children in cycles of illness, missed education, and poverty.
In 2023, the Government of India launched the ambitious National Sickle Cell Anaemia Elimination Mission under the National Health Mission, targeting elimination as a public health problem by 2047. Focused on 17 high-prevalence states, the mission aims to screen millions, provide counselling, early diagnosis, and improved care. This initiative represents real hope through awareness, premarital counselling, universal screening, and strengthened primary-to-tertiary care linkages. Early results are encouraging, with significant numbers already screened.
However, implementation challenges remain—especially in reaching remote tribal areas, ensuring quality diagnostics, building specialist capacity, and delivering consistent treatment. We must accelerate these efforts with adequate funding, training, and monitoring to turn policy into tangible relief.
On this Sickle Cell Day, we must prioritise the basics while keeping sight of curative possibilities. Safe blood must become a non-negotiable right for every patient. We need rigorous, quality-assured screening at every transfusion centre, coupled with investments in voluntary blood donation drives, centralised testing facilities, and regular audits. No child should acquire a deadly infection while seeking care. At the same time, access to curative treatments such as bone marrow transplant (BMT) must be expanded. Hematopoietic stem cell transplant offers a proven cure for eligible patients, but donor matching is difficult, and costs are prohibitive for most families. The Elimination Mission plans to upgrade tertiary centres for BMT services, and we must ensure these are made accessible through subsidies and financial aid for needy families.
Chronic care imposes a devastating economic strain on families. We need expanded social security schemes that provide free or subsidised medicines, travel support, and nutrition aid. Holistic support improves adherence and outcomes. Looking ahead, gene therapy offers transformative hope. These therapies, if we can make them accessible, have potential for one-time treatments that address the root genetic cause. Indian researchers are working on locally developed options to make this affordable. While currently out of reach for most due to cost, integrating gene therapy research, infrastructure, and equitable access models into our national mission could change the future for thousands.
Safe blood today, comprehensive care tomorrow, and curative therapies in the near future are not luxuries; they are imperatives for equity and dignity. Let us commit to closing the gaps so that every child with sickle cell disease can live a full, healthy life free from preventable suffering.
The writer is a paediatric haematologist and a bone marrow transplant specialist in New Delhi. He is also a researcher innovating cell therapy solutions.
The opinions expressed in this article are those of the author and do not purport to reflect the opinions or views of THE WEEK.
