In conversation with Anubha Taneja, Member Secretary, Thalassemia Patients Advocacy Group

1. What is the burden of Thalassemia disease in India?

India is the thalassemia capital of the world. Thalassemia is one of the most prevalent disorders among inherited conditions – carried in genes and passing from one generation to other, affecting nearly 200 million people globally.[Thalassemia poses a serious public health threat globally because of the higher prevalence extending from the Mediterranean region and parts of Africa.

National carrier state of thalassemia remains 5% to 7%. Globally, thalassemia affects nearly 4.4/10,000 live births. In India, every year 10,000 children are being born with thalassemia which approximately accounts for 10% of the total world incidence of thalassemia-affected children and one in eight of thalassemia carriers live in India. The prevalence of thalassemia ranges between 0.6% and 15% across south India. There is no National registry for Thalassemia but it is estimated there are more than 1.5 lakhs patients of thalassemia in India.

2. What challenges have been faced by the Thalassemia patients in the current pandemic scenario?

The pandemic brought the thalassemia community on their knees. Even before the onset of Covid-19, Voluntary Blood Donation in this country was a challenge. As the pandemic broke, lockdowns followed and blood donation camps came to a halt, survival itself became a huge challenge for thalassemics. Searching blood donors online and from friends/ family circle became imperative for making fortnightly blood transfusions, and therefore, survival possible. During lockdowns in various States, transportation of patients and donors also became extremely difficult. Patients had to often opt for their neighbourhood hospitals and nursing homes even when the quality of care in the same could not be assured as the blood screening methodology and other parameters of care are not standardised across India. It was each to his own, literally. Availability of life saving drugs and the regulations of fortnightly Covid-19 testing imposed by some hospitals added to the physical, emotional and economic woes of the community.

3. What measures do you think government can take to streamline regular safe blood transfusion for Thalassemia patients and other patients who need regular blood transfusion?

Firstly, stand of care needs to be standardised. It should be OneIndiaOneHealthcare. Health being a State subject, inspite of progressive policies like NHM and groundbreaking laws like RPWD Act 2016, management and care of chronic conditions like thalassemia varies substantially from one State to the other. For instance, while the blood screening methodology called NAT (that is understood to be most effective in preventing Transfusion Transmitted Infections like HIV, HCV, HBV, etc) has been mandated in Odisha, Jharkhand still struggles for packed RBCs and patients have to make do with whole blood which is not the protocol for thalassemia patients. There is disparity even between two Government hospitals of one State! There is an urgent need for effective coordination between various authorities for strict implementation of RPWD Act 2016 that has provisions for ensuring safety of patients with disabilities like thalassemia and guarantees priority treatment for such patients. Most importantly, there needs to be one regulator and one regulation for regulating blood transfusion services. We cannot be regulating blood under the Drugs and Cosmetics Act and then leaving the implementation to voluntary guidelines by NACO, NBTC, SBTCs etc while budget for thalassemia is being provided under NHM. There needs to be a registry for thalassemics and a strict coordination between States to ensure uniform care of thalassemics while standardised care arrives.

4. What are some of the international best practices that you think India can replicate to address the challenges related to Thalassemia?

Thalassemia is no more a paediatric condition. There need to be adult thalassemia day care centres across the country. Management needs to standardised across the nation and blood needs to safe! I am attaching a report in this regard. We must have one regulator for regulating blood and screening methodologies and other practices must be standardised.

5. Is there any way to eradicate Thalassemia from the country? If so, what would be the most feasible way for a vast country like India where many people still do not understand the disease?

Nothing less than a nation-wide campaign will do. It is also provided for under RPWD Act 2016. There needs to be a massive awareness campaign accompanied with aggressive screening and counselling. Cyprus has achieved Zero thalassemia birth. Other countries can also be emulated in this regard.

6. How do you see the Rights of Persons with Disabilities Act 2016 working in favor of Thalassemia patients? Do you feel an amendment is required?

As mentioned above. Strict implementation and populatisation of the Act is required at this stage. We also need to look at reservations in employment and more stringent steps for private or government players for terminating services of thalassemics. Implementation is the key though.