Presented in honor of past ASH presidents Thomas Hale Ham, MD, and Louis Wasserman, MD, the annual Ham-Wasserman Lecture recognizes an individual from outside the United States who has significantly impacted global hematology. This year, ASH honored leading pediatric hematologist Dipty Jain, MD, MBBS, who spoke during her lecture yesterday about India’s groundbreaking efforts to combat sickle cell disease (SCD). Dr. Jain presented key milestones of India’s 2023 National Sickle Cell Anaemia Elimination Mission (NSCAEM) and discussed its global implications.
The Reach of the Challenge
India has among the highest hemoglobin S allele frequencies in the world and the third-highest birth rate for babies born with HbSS, a severe form of SCD, disproportionately affecting marginalized tribal communities in India. These populations make up more than 8% of the country’s 1.4 billion people, with one in 86 births affected by SCD. Despite earlier assumptions that India’s SCD cases were predominantly mild due to higher fetal hemoglobin levels, new research indicates a spectrum of severity, complicating disease management efforts. “India’s SCD patient population is unique and responds differently to treatments compared to other populations,” Dr. Jain said in an interview ahead of her lecture. “Relying on foreign protocols is not effective. It’s high time we crafted our own guidelines.”
A Bold Initiative
In an ambitious move, the government of India launched NSCAEM in July 2023 in an effort to screen more than 70 million people under the age of 40, with a focus on high-prevalence states. As of September 2024, more than 42 million individuals have been screened, with 163,765 cases of SCD and more than a million carriers identified. “The large-scale screening initiative is a crucial step towards controlling the disease,” said Dr. Jain. “Eliminating SCD might be ambitious, but control is certainly achievable.”
India’s approach integrates innovative tools like sickle cell status identity cards, which simplify genetic counseling. Couples can overlay their cards, which are hole-punched according to the beta-sickle globin mutation, and visually see if their holes overlap. The cards are an educational tool used to help carriers overcome language barriers and health literacy to understand the potential genetic risks to their offspring. Additionally, hydroxyurea, a cornerstone therapy for SCD, is locally manufactured, making it affordable and accessible.
A Great Accomplishment
The program’s success relies heavily on its community-centered approach. Dr. Jain highlighted the importance of these partnerships, advocating that building trust within these communities has been key. Without their involvement, large-scale adoption of screening and treatment would be impossible, she said.
Beyond screening and routine treatment, NSCAEM encompasses culturally tailored practices like yoga for pain management while balancing access to advanced treatments. Dr. Jain noted that while gene therapy shows promise, its effectiveness must be assessed against India’s unique genetic diversity.
Future Hurdles to Address
NSCAEM provides transparency through its public online dashboard, providing real-time data on screening and prevalence. “While screening has increased, we are detecting cases in previously unaffected regions like Rajasthan and Jharkhand,” warned Dr. Jain. “This indicates the disease’s growing prevalence.”
The mission is also addressing the critical need for genetic counseling. Premarital and antenatal counseling are integral parts of the program, especially in tribal populations where consanguinity rates are high. India’s efforts under NSCAEM have implications far beyond its borders. The program serves as a blueprint for other high-prevalence regions, particularly in sub-Saharan Africa.
This year’s Ham-Wasserman Lecture invited attendees to think outside the box, collaborate, and embrace innovative, culturally sensitive approaches to creating accessible solutions. It was a meeting highlight for anyone invested in the future of global health and hematology.
