Thalassemia patients affected due to shortage of medicine in govt-run hospitals

After every few months, the government-run hospitals in Mumbai keep facing an acute shortage of the medicine, iron chelator – which is essential in treating thalassemia patients. They also need multiple blood transfusions every month.

Mumbai: Makarand Surve – a resident of Mulund – had to quit working just before the pandemic due to chronic pain in his entire body. He suffers from thalassemia, a genetic blood disorder, which restricts the production of haemoglobin in the body. His two-member family, consisting of his mother and him, now depends on the pension of his late father for daily expenses.

After every few months, the government-run hospitals in the city keep facing an acute shortage of the medicine, iron chelator – which is essential in treating thalassemia patients.

“I spend most days filling up the paperwork and doing other formalities to get necessary financial aid from NGOs for iron chelator medicines, which were earlier available at government-run hospitals free of cost,” said Surve.

After every few months, the government-run hospitals in the city keep facing an acute shortage of the medicine, iron chelator – which is essential in treating thalassemia patients. They also need multiple blood transfusions every month.

The shortage of these medicines means that most patients need to buy them or look for a sponsor. This can be a big financial burden on the families as most of them are poor and most of them with the condition aren’t able to sustain jobs.

Surve, 39, requires the sponsorship of up to ₹20,000 a month for his medicines, which he could not afford otherwise. Last week, more than 40 patients like him collectively wrote to the dean of Lokmanya Tilak Municipal General Hospital (Sion Hospital) about the perennial shortage of the drug.

In Ulhasnagar, activist Ashok Khatuja wrote a letter to health minister Tanaji Sawant in October. He blamed the unavailability of these medicines at the Central Hospital which caused the death of ten children with thalassemia major. “The daycare centre for thalassemia patients has been running at the hospital since 2013. Yet, there is no dedicated staff or even a haematologist to look after the kids here,” he pointed out in the letter.

In some cases, patients say they are given generic substitutes that are not very effective on them. “Generic medicines may be cost-effective for the government but they are not helping the patients much. Change in the brand of medicine frequently also makes things difficult for us,” said Sangeeta Wadhwa, 45, a psychologist who suffers from thalassemia. Many patients have complained of the generic medicines not suiting them but there is no data on the exact efficacy and side effects, she added.

Activists have been asking hospitals to streamline their stock and order of medicines for years. “As the patients are covered under the Mahatma Phule Jan Arogya Yojana, the medicines can easily be purchased by the local purchase committees of the hospital,” said activist Rahul Salve.

The shortage of medicines in government hospitals is a problem being faced across the state, said Dr Mahendra Kendre, the assistant director, Directorate of Health Services. “The process of procurement is long and can take up to four months when it goes smoothly. There was some problem with our last procurement as the prices at which the bid was made were inflated by 10% by the time we put in the order. As we had the approved budget over the previous price, we had to redo all the documentation to get new approvals,” he said.

Talking about the generic medicines, he said that the tenders are invited to purchase the medicines based on their formulation and it is procured from the lowest bidder. Due processes are in place, he added, to ensure that the drug being ordered has the FDA approvals.

Dr Kendre said that the hospitals can and should purchase essential medicines locally. He also said that the department has already got the budget allocated for iron chelators for the next two years. “All the districts have been given ₹50,000 for emergencies. We are trying to rectify the system to make the process more streamlined for a long-term solution to ensure a shortage of medicines does not affect patients,” he said.

Additional municipal commissioner (health) Dr Sanjeev Kumar said he would look into the matter.