India’s sickle cell challenge

 India’s sickle cell challenge

With over a million people affected with sickle cell disease, India bears the world’s second largest burden of this condition

Last year, Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission to eliminate sickle cell disease as a public health problem by 2047, from Shahdol, Madhya Pradesh.

Challenges in India

cases in india ?

With over a million people affected with sickle cell disease, India bears the world’s second largest burden of this condition. 

A majority of the patients are concentrated 

in the tribal belt running across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.

about desease

Sickle cell disease is caused by a genetic abnormality: if both parents carry the sickle cell trait, the child has significant chances of being born with the disease. 

While healthy individuals

have disc-shaped red blood cells, those with sickle cell disease have red blood cells that take on a crescent or sickle-like shape. 

The lifespan of these patients 

is significantly shortened (to about 40 years) and their quality of life is curtailed due to the range of health complications 

• sickle cell anaemia,
•  recurrent infections, 
• pain, 
• swelling, 
• and damage to vital organs. 

social stigma 

In addition to health issues, patients also suffer from the social stigma that is attached to this disease. They can sometimes be deemed “genetically inferior” and ostracised. 

Some of them are told that this disease is “God’s curse”. In some areas, the condition is attributed to “black magic”. patients also face diminished marital and social prospects.

after launch of the Mission in 2023 

With the launch of the Mission in 2023, the Central government’s attention to the disease is high. 

 large-scale screening  

Among other efforts, a large-scale screening programme is underway nationwide. 

Hydroxyurea as a essential medicines  

this  a vital medicine for treating sickle cell disease, been included in the essential medicines list; this has increased access to it. 

just 18 % have consistent treatment 

Our estimates suggest that only 18% of the people affected by sickle cell disease in India are receiving consistent treatment.

we see patients drop out at all stages of treatment: 

1. while getting screened for the disease, 
2. while getting diagnosed,
3.  while starting treatment, 
4. and while trying to adhere to treatment.

diagnosis and treatment adherence stages 

The largest drops occur at the diagnosis and treatment adherence stages. 

Getting a correct diagnosis is a challenge as many people hesitate to seek support due to the stigma associated with the condition. 

They often consult traditional healers, who frequently misdiagnose the condition. While the public system has a stronger diagnostic capacity for sickle cell disease, there is a historic mistrust of it in tribal areas. As a result, few patients get tested.

 treatment adherence

  research in gene therapy 

No permanent cure is available for sickle cell disease. Ongoing research in gene therapy is promising, but will be unaffordable for most of the affected population even when it becomes available. 

hydroxyurea 

At present, relatively inexpensive drugs such as hydroxyurea are effective for most patients if administered with the right dosage and frequency. 

regular and convenient supply of medicines 

However, there is seldom a regular and convenient supply of medicines, along with adherence support (such as that provided to TB patients). 

Key medicines sometimes go out of stock. Patients have also said that they need to travel long distances to pick up their medicines. In a State in central India, a healthcare professional noted that patients travel for more than 200 kilometres to seek treatment. 

coverage of several vaccinations

which reduce the frequency of infections and improve the quality of life for patients, remains poor.

The way ahead

some  challenges

First, it is important to reduce the stigma 

related to the disease and build trust in public health institutions. 

Awareness should be raised through targeted media campaigns to bust specific myths (which vary by region and tribe). 

For this, India could draw from its experience in tackling polio and HIV. 

Second cases are often missed and diagnosis delayed

given that cases are often missed and diagnosis delayed, there could be increasing screening for newborns. 

This strategy is low-cost with a high pay-off and would especially be effective in areas where the condition is endemic.

Third, drugs as well as adherence support 

must be available close to patients, in the nearest health and wellness centres. For complications, interdisciplinary centres of excellence at the district/division levels should be made operational.

Fourth approved vaccines

, ensuring that all known patients receive approved vaccines will be crucial; this may require catch-up vaccination programmes.

Fifth, health in tribal areas 

should be operationally strengthened by factoring in conditions unique to these areas. Healthcare should also be adequately funded.

6th research should be conducted 

to better understand the disease and its pathways in India, and to develop new treatments. Philanthropists and members of civil society must play a catalytic role, and work with the Central and State governments.

source the hindu