Iron chelation drugs, which are essential for patients with thalassemia, must be taken frequently and can cost over Rs 20,000 per month. Most cannot afford it and are forced to give it up for months.
For Ayesha, 29, the past and a half years have been difficult. As a thalassemia patient, the risk to her health from COVID-19 has been higher than for most other people. The pandemic has also affected the blood supply to hospitals, on which people with thalassemia depend because they have to undergo transfusions as often as every 15 days. In addition, she unexpectedly lost her father to pneumonia in 2020, which was a blow to their entire community but especially to her. Without his support, she finds it difficult to afford the life-saving medicine she needs.
Thalassemia, a genetic disease of the blood, is a form of anemia, characterized by a decrease in the level of hemoglobin in the body, which results in a reduction in the oxygen carrying capacity of the blood. This means that the person with the disease is constantly tired and weak and needs frequent blood transfusions. However, because of this, excess iron builds up in the body, which can build up in vital organs like the heart and liver, and damage them, sometimes fatally. To remove this excess iron, patients are prescribed iron chelating drugs, available under different brands in India, and should be taken often to ensure good health.
However, these drugs are expensive. They have to be taken every day and can cost patients over Rs 20,000 per month, which many cannot afford, including Ayesha. She says that in 2021, she didn’t take her chelating drugs for four to five months in a row because she couldn’t afford them. Bengaluru’s Thalassemia and Sickle Cell Society (TSCS), which aims to bring thalassemia patients together and raise awareness, has asked a donor to help Ayesha get her chelation drugs for a month. However, the funds and the drugs are depleted, and Ayesha says she shouldn’t have to rely on the kindness of just one person to help her buy them, because legally it’s the government’s job.
Thalassemia is classified under the Disability Rights Act (2016), which requires the government to formulate programs to provide free drugs and any equipment needed for treatment. Recently, the TSCS took the High Court of Karnataka, asking the government to restore the free supply of iron chelating drugs to patients. According to Ayesha, in early 2018, iron-chelating drugs such as Desferal (an injection) and Asunra, both needed by patients, along with other drugs were distributed free of charge in some public hospitals. However, their supply has been irregular since 2019 and they have not been available in hospitals since 2020.
The TSCS, which is a plaintiff in the High Court case, said there are over 17,000 thalassemia patients in Karnataka alone, and that there are costs other than for iron chelators. including blood filters, hospital visits, etc. the drugs are also too heavy for most patients.
The High Court bench hearing the plea, made up of Acting Chief Justice Satish Chandra Sharma and Judge Sachin Shankar Magadum, issued a notice to the state government on the petition. The National Health Mission must respond to the notice within two weeks.
A story of downtime
Thalassemia is one of the most common genetic diseases in the world, with India at the top of the list. According to the National Health Mission, there are over 1.5 lakh of 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 thalassemia major are born each year. Many of them do not pass the age of 20, mainly due to the inaccessibility of life-saving treatments and drugs, including iron chelators.
This is not the first time that patients with thalassemia have had to fork out money to buy chelating drugs. In 2019, more than 800 patients in Delhi had no supply of the chelating drug Deferiprone as the AAP government canceled the tender for its supply as only one company bid. In March of this year, a protest erupted at Ludhiana Civil Hospital in Punjab over the unavailability of chelating drugs. The Times of India reported that many poor patients depended on the civilian hospital for their medicines because they could not afford them otherwise; and once the supply dried up there, many were forced to stop taking the drugs, as was Ayesha.
In 2016, Desferal, manufactured by Novartis, was in short supply in India for about a year. This had prompted thalassemia societies as well as doctors and health activists to appeal to Union Health Minister JP Nadda to intervene. However, Novartis has reportedly said that there is no shortage of Desferal on the market, but that it is still not available to patients, raising doubts about an artificial shortage. The drug supply was restored soon after, but continued to be irregular in parts of the country. A shortage was again reported, lasting over a year in Karnataka and around a month in Mumbai, in 2018.
According to a thalassemia advocate who declined to be named, they had previously had to work hard and make numerous representations to the Karnataka National Health Mission and the State Blood Cell to unlock funds for the free provision of chelating drugs. Finally, in 2018, the national blood cell coordinator, S Banakar, ordered that the drugs be available free of charge in public hospitals. Ayesha confirms that during this time she was able to get 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 start of the program. When the supply of chelation drugs stopped in 2020, once the pandemic broke out and containment was put in place, members of the TSCS approached the State Blood Cell under the National Health Mission, which is responsible for procuring drugs and ensuring patient care. blood disorders.
As of February 2020, the batch of Desferal injections purchased by the State Blood Cell had expired because the government does not have a record of the number of thalassemia patients in the state and there was a surplus of Desferal ordered. Now, the lawyer claims that a single chelating drug called Kelfer, made by Cipla, is available in a few hospitals, but many patients prefer not to take it due to its many side effects such as nausea, upset stomach, vomiting, etc.
Health and policy researcher Dr Anant Bhan says: “The responsibility (to collect data) lies with the government because these are people with chronic illnesses that require a lot of medical attention. And also because of their follow-up, it will help the government understand the burden (of disease) and determine what needs to be done in terms of caring for those in need. But to say that the responsibility is not with the government and that it does not have this data is to wash your hands and it is not fair.
“The law on the rights of persons with disabilities is quite clear in this area. It is legally mandated because it is a moral responsibility (of the government) because it is defined in a law. All the more reason for this request to be justified, the drugs should be provided free of charge by the government. They should have a database of all patients who require intervention, the number of thalassemia patients, their health monitoring, etc., and ensure that care is provided during times of emergency such as the pandemic. He adds.
The COVID-19 pandemic has brought the world to a halt. But for thalassemia patients, it was a particularly dangerous time. Not only because of the threat of the actual disease (thalassemics are particularly susceptible to pathogens due to their low level of immunity), but also because the lockdown has led to many problems. On the one hand, the blood supply for transfusion was very low, especially in early 2020, as strict social distancing standards were in place and the movement of people was strictly prohibited.
Additionally, the Desferal and Asunra shortage was again reported at the time, and since then it has not been available for free in places such as Victoria Hospital, KC General Hospital and the Sir CV Raman General Hospital in Bengaluru, where they were available. in 2019.
“In November, it will be over a year since I stopped receiving iron chelation tablets from the government. We only had the facility for a year before that. When my father was alive, it was difficult for me to get the medicine. But now I don’t even have it. I only have my brother who takes care of my whole family. His income is also lower, he teaches Namaaz at the neighboring mosque. He only receives Rs 12,000 per month. With that, he has to run the whole house. We have a hard time doing it, but covering the costs of my illness is extremely difficult, ”says Ayesha. While it is necessary to take the injectable Desferal and oral chelators daily, due to her situation, Ayesha ends up taking Desferal only at the time of the transfusions, and takes either the injection or the oral medications whichever she is able to. to take. get at the time.
“We need the government’s help. No matter how much a person is able to help us, how long will they be able to do it, out of their own pocket? I’m not the only patient with thalassemia, there are so many others who can’t afford the drugs on their own at all, ”Ayesha says. “They need to understand that just like other people with disabilities, thalassemia is also a disability. “
“With great difficulty, we had started to get the government chelation drugs, but it stopped after the pandemic. But how is this our fault? It is not our fault that the drugs they ordered have expired. They should have given it another chance, they should have ordered another batch again. So many patients like me have suffered, ”she adds.
TNM reached out to the state’s blood cell coordinator and the director of the state’s national health mission, but they were not available for comment.