For 29-year-old Ayesha, the past one-and-a-half years have been tough. As a patient with thalassemia, the risk to her health due to COVID-19 has been higher than for most other people. The pandemic also affected the supply of blood to hospitals, on which those with thalassemia depend as they have to undergo transfusions as often as every 15 days. Added to this, she unexpectedly lost her father to pneumonia in 2020, which came as a blow to their entire community but especially to her. Without his support, she is struggling to afford the lifesaving medication she needs to take.
Thalassemia, a genetic blood disorder, is a form of anaemia, characterised by reduced haemoglobin in the body, which leads to reduced oxygen carrying capacity of the blood. This means that the person who has the disease is constantly fatigued and weak, and they need frequent blood transfusion. However, due to this, excess iron builds up in the body, which can collect in the vital organs like the heart and liver, and damage them, sometimes fatally. To remove this excess iron, iron chelation drugs are prescribed to the patients, available under different brands in India and need to be taken often to ensure good health.
However, these drugs are expensive. They need to be taken every day, and can cost patients over Rs 20,000 a month, which many cannot afford, including Ayesha. She says that in 2021, she did not take her chelation drugs for four to five months at a time as she couldn’t afford them. The Thalassemia and Sickle Cell Society (TSCS) of Bengaluru, which aims to bring thalassemia patients together and create awareness, arranged for a donor to help Ayesha get her chelation medicines for a month. However, the funds and the drugs have run out, and Ayesha says she should not have to rely on the kindness of any one person to help her buy them, because legally, this is the government’s job.
Thalassemia is classified under the Rights to Persons with Disabilities Act (2016), according to which the government must formulate schemes to provide drugs and any necessary equipment needed for treatment, free of cost. Recently, the TSCS moved the Karnataka High Court, seeking the government to restore the free supply of iron chelation drugs for patients. According to Ayesha, in the beginning of 2018, iron chelation medicines such as Desferal (an injection) and Asunra, which are both necessary for the patients, as well as other medicines were distributed for free at certain government hospitals. However, the supply of these has been irregular since 2019, and they have not been available at hospitals since 2020.
The TSCS, who are petitioners in the High Court case, said that there are over 17,000 thalassemia patients in Karnataka alone, and there are costs other than for the iron chelators, including for blood filters, hospital visits etc. The burden to pay for the medicines as well is too heavy for most patients.
The High Court bench which was hearing the plea, consisting of acting Chief Justice Satish Chandra Sharma and Justice Sachin Shankar Magadum, has issued a notice to the state government on the petition. The National Health Mission must respond to the notice in two weeks’ time.
Thalassemia is among the most common genetic disorders in the world, India being among the top in the list. According to the National Health Mission, there are over 1.5 lakh people with thalassemia in India, and there are over 42 million carriers of the beta thalassemia trait. About 10,000 to 15,000 babies with a thalassemia major are born every year. Many of them don’t make it past the age of 20, mainly due to inaccessibility to lifesaving treatments and medication, including iron chelators.
This is not the first time that thalassemia patients have had to shell out money from their own pockets to buy chelation drugs. In 2019, over 800 patients in Delhi did not have any supply of the chelation medicine Deferiprone, as the AAP government cancelled the tender for its procurement because only one company bid for it. In March this year, a protest broke out at the civil hospital in Punjab’s Ludhiana over the unavailability of chelation medicines. The Times of India reported that many poor patients were dependent on the civil hospital to get their medicines, as they could not afford them otherwise; and once the supply dried up there, many were forced to stop taking the drugs, just like Ayesha.
In 2016, Desferal, manufactured by Novartis, was in short supply across India for around a year. This had prompted thalassemia societies along with doctors and health activists to appeal to then Union Health Minister JP Nadda to intervene. However, Novartis had reportedly said that there was no shortage of Desferal in the market, but it was still unavailable for patients, bringing doubts of an artificial scarcity. The supply of the medicine was restored soon after, but continued to be irregular in some parts of the country. A shortage was again reported, for over a year in Karnataka and about a month in Mumbai, in 2018.
According to a thalassemia advocate who did not wish to be named, they had to previously work hard and make many representations to the Karnataka National Health Mission and the State Blood Cell to release funds for the free supply of chelation medicines. Finally, in 2018, then State Blood Cell Coordinator S Banakar ordered that the medicines would be available free of cost at government hospitals. Ayesha confirms that during that time, she was able to obtain all the chelators she needed and was taking them regularly at the time.
However, this did not last, as the supply started to dry up and become irregular in 2019, just over a year after the programme began. When the supply of the chelation medicines stopped in 2020, once the pandemic broke out and lockdown was in place, members of the TSCS approached the State Blood Cell under the National Health Mission, which is in charge of procuring the medicines and ensuring treatment for patients of blood disorders.
In February 2020, the batch of Desferal injections procured by the State Blood Cell had expired, as the government does not have a register of the number of thalassemia patients in the state and there was a surplus of Desferal ordered. Now, the advocate says that only one chelation drug called Kelfer, manufactured by Cipla, is available at a few hospitals, but many patients prefer not to take it because of its many side effects such as nausea, stomach pain, vomiting etc.
Dr Anant Bhan, a health and policy researcher, says, “The onus (to collect data) falls on the government because these are individuals with a chronic disease which requires a lot of medical care. And also by virtue of tracking them it will help the government understand the burden (of the disease), and figuring out what needs to be done in terms of providing care to those who need it. But to say that the onus doesn’t lie with the government and that they don’t have that data is washing their hands of the matter and that is not fair.”
“The Rights of Persons with Disabilities Act is quite clear in that domain. It is legally mandated, because it’s a moral responsibility (of the government) because it is defined under an act. Hence it is all the more reason for that demand to be justified, medicine should be provided for free by the government. They should have a database of all the patients who require intervention, how many thalassemics there are, tracking their health etc, and ensuring that care is provided during emergency periods like the pandemic,” he adds.
The COVID-19 pandemic brought the world to a halt. But for patients of thalassemia, it was a particularly dangerous time. Not just because of the threat of the actual disease (thalassemics are particularly susceptible to pathogens because of their low immunity levels), but also because the lockdown brought a host of problems with it. For one, the supply of blood for transfusion was very low especially in the beginning of 2020, as there were strict social distancing norms in place and movement of people was strictly barred.
Added to this, the shortage of Desferal and Asunra was reported once again at the time, and since then, it is unavailable for free at places such as Victoria Hospital, KC General Hospital and Sir CV Raman General Hospital in Bengaluru, where they were available in 2019.
“In November, it will be over a year since I stopped getting iron chelation tablets from the government. We only got the facility for a year before that. When my father was alive, it was difficult for me to get the medicines. But now I don’t even have him. I only have my brother who takes care of my entire family. His income is also less, he teaches the Namaaz at the nearby mosque. He gets only Rs 12,000 a month. With that he has to run the whole house. We struggle to do that, but covering the costs of my illness is extremely difficult,” Ayesha says. While it is necessary to take both the Desferal injection and oral chelators every day, because of her situation, Ayesha ends up taking Desferal only at the time of transfusions, and takes either the injection or the oral drugs depending on which one she is able to get at the time.
“We need help from the government. No matter how much any one person is able to help us, how long will they be able to do it, from their own pocket? I’m not the only thalassemia patient, there are so many more who can’t buy the medicines at all by themselves,” Ayesha says. “They should understand that just like other people with disabilities, thalassemia is also a disability.”
“With a lot of difficulty, we had started getting the chelation medicines from the government but it stopped after the pandemic. But how is that our fault? It is not our fault that the medicines they had ordered expired. They should have given it another chance, they should have ordered another batch again. So many patients like me suffered,” she adds.
TNM reached out to the State Blood Cell Coordinator and the Mission Director of the state National Health Mission, but they were unavailable for comment.