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Thalassemia: The Long Road From The Bedside Through The Laboratory To The Community
Cite this articleWeatherall, D. Thalassemia: the long road from the bedside through the laboratory to the community. Nat Med 16, 1112–1115 (2010). Https://doi.Org/10.1038/nm1010-1112
Share this article Get shareable linkShila Amzah Reveals She's Not Fasting This Ramadan Due To Low Blood Pressure And Thalassemia Issues
Shila Amzah, with husband Ubai, has health issues preventing her from fasting this Ramadan. Photo: Handout
Singer Shila Amzah's statement that she's not fasting this Ramadan has caused discomfort among some netizens.
To explain why she's not fasting, the 33-year-old who is eight months pregnant, said that every pregnant woman has different problems that affect their fasting ability.
For her, she could not fast this Ramadan as she has low blood pressure and thalassemia. (According to a medical website, thalassemia is an inherited blood disorder caused when the body doesn't make enough of a protein called hemoglobin.)
Shila shared her reasons for not fasting on her Instagram account on Saturday (March 30) evening.
"I have thalassemia, so the problem of low blood pressure cannot be avoided.
"So don't tell me you can fast if you have low blood pressure," Shila said.
She continued: "Everyone's body is different, especially since I am pregnant... We can't put everyone in the same category, right?"
Shila said that her low blood pressure problem often makes her feel dizzy and want to faint.
Even though she takes her medication on time, she recalled that she almost fainted one time when out buying household items.
"This low blood pressure is really a problem ... Walking a bit makes me dizzy, standing for a long time also makes me dizzy ..."
She added: "Pray for me and the baby to have a safe delivery, God willing."
Many women who have had health issues while they were pregnant posted encouraging comments, saying they understand why Shila couldn't fast. They hoped for Shila to feel better soon and wished her a safe delivery.
This is Shila's second pregnancy. The artiste, who is married to Ubai, has a four-year-old son from her first marriage to Haris Edraki, which ended in a divorce in 2022.
Tackling Thalassemia: Transformation Through Collaboration
As a Member of Parliament representing the Rajya Sabha, public health remains a focal point of my discussions. Among the myriad health challenges facing our nation, thalassemia stands out as a significant concern that demands our attention. Through ongoing dialogues with thalassemia patients, subject matter experts, and thalassemia patient advocacy groups, I have gleaned valuable insights into the complexities surrounding this condition.At a time when India is noticing an uptick in its health indicators and policies like the National Health Mission (NHM) and the Ayushman Bharat Scheme are operating in full swing, there is hardly any data about the burden of thalassemia and the vulnerabilities of thalassemics. Thalassemia remains a significant health issue in India, characterised by an inherited blood disorder resulting in inadequate production of haemoglobin, thereby affecting the functionality of red blood cells. Designated as a benchmark disability under the Rights of Persons with Disabilities (RPWD) Act of 2016, thalassemia poses a lifelong challenge for those affected, profoundly impacting their quality of life.
Dubbed the Thalassemia capital of the world, every eighth Thalassemic in the world lives in India. India has the highest count of children affected by Thalassemia major globally, estimated to be around 100,000 to 150,000, along with approximately 42 million individuals carrying the ß (beta) thalassemia trait. Each year, approximately 10,000 to 15,000 infants are born with thalassemia major in the country. However, optimal management is lacking for many, with allogeneic stem cell transplants often unaffordable for many.Despite efforts by government and non-governmental organisations over the past few decades, achieving community control over thalassemia in a vast and diverse country like India remains challenging. To address this issue, promoting education and awareness programmes, intensifying screening efforts nationwide, establishing adequate facilities for genetic counselling and prenatal diagnosis in public sector institutions, and developing cost-effective facilities for stem cell transplantation nationwide are imperative steps. Most important out of them all is a collaborative approach between all stakeholders, with the affected having the highest decision-making authority.
Vulnerability of ThalassemicsThe only cure available for thalassemics is a Bone Marrow Transplant (BMT), which is highly expensive and not affordable by everyone. The affected and their families face substantial financial burdens due to the high costs associated with obtaining safe blood, iron chelation therapy, regular medical checkups, and essential medications. The lack of comprehensive support exacerbates their financial challenges, pushing them deeper into financial instability and making it difficult to afford necessary treatments and care.Individuals with thalassemia, especially those with transfusion-dependent thalassemia major, are at heightened risk of Transfusion-Transmitted Infections (TTIs) due to frequent blood transfusions. This poses significant health risks, including risks that are associated with the condition like growth delays, skeletal abnormalities, enlargement of the spleen, and heart problems.
Thalassemics can have an emotionally challenging life, given the constant need for medical interventions and the associated health complications. Patients and their families often grapple with feelings of anxiety, stress, and uncertainty about the availability of safe blood transfusions, the future, etc., adding an emotional burden to their struggles.Access to Safe Blood and TransfusionsAccessing safe blood and transfusions poses significant challenges for patients in countries like India, where regulatory oversight of blood transfusion practices is deficient. Unfortunately, India's blood transfusion service is largely fragmented and lacks standardised guidelines covering all aspects of blood transfusions, including screening for transfusion-transmissible infections like HIV and HCV.
In 2019, India required 1.3 crores of blood units, but data tabled in the Rajya Sabha reveals that only 1.27 crores of blood units could be collected. According to the India Red Cross Society, blood collection dropped by 50 per cent compared to pre-lockdown levels. This presented an extreme risk to over 200,000 estimated thalassemia patients living in the Indian subcontinent, whose lives depended on regular blood transfusion.Lack of DataThe Union Health Ministry is excluding anaemia from the upcoming NFHS survey. The latest NFHS-5 revealed a perplexing surge in anaemia levels across all age groups, with at least 67 per cent of children displaying anaemia, up from 58.6 per cent in the NFHS-4 survey. According to World Bank data, one in two Indian women suffers from anaemia, marking a 20 per cent increase compared to the global average. The government has decided to measure anaemia through the Diet and Biomarkers Survey (DABS), which is yet to be released.
Concerns have been raised regarding the potential inability of DABS to assess progress in addressing anaemia, as its data will not be directly comparable to that of previous surveys. This may conveniently prevent the government from evaluating the effectiveness of its anaemia prevention measures. Additionally, the implementation of DABS will require considerable time and resources for data collection, cleaning, computerisation, and analysis across various demographic variables such as age, caste, and gender.
Way ForwardFirst and foremost is the existence of a collaborative stakeholder approach, including governments, think tanks, civil societies, the media, health experts, and the affected parties. In this case, there is yet to be any consultative process adopted by the government to include thalassemics in the decision-making process. To ensure the provision of safe and sufficient blood for all patients, it is imperative to centralise all activities related to blood collection, testing, processing, storage, and distribution through organised supply networks at the national level. To enhance the safety of blood transfusions, the government should prioritise the implementation of Nucleic Acid Testing (NAT) screening nationwide. This screening should cover HIV 1 and 2, Hepatitis B, and Hepatitis C, with validated test results communicated to blood centres via IT-based systems. Standardised blood screening protocols for all donated blood should be implemented to eliminate the risk of transfusion-transmissible infections. The existence of a stringent, comprehensive blood law with one overseeing regulatory authority is necessary.
Efforts to educate and raise awareness among the diverse Indian population, both urban and rural, remain crucial. Authorities must raise awareness about thalassemia care and prioritise education on voluntary blood donation to bridge the demand-supply gap.
To cater to the growing needs of thalassemia patients, more daycare centres are required, along with encouragement for low-risk patients to undergo stem cell transplantation. Utilising the existing public health infrastructure, especially in rural areas, is vital for effective implementation at the national level. Lastly, emphasis on a collaborative approach involving state governments, NGOs, thalassemia societies, corporate entities, and political support is essential.
Vandana Chavan, Member of Parliament, Rajya Sabha
(DISCLAIMER: The views expressed are solely of the author and ETHealthworld.Com does not necessarily subscribe to it. ETHealthworld.Com shall not be responsible for any damage caused to any person/organisation directly or indirectly)
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