A Wake-Up Name: COVID-19 pandemic warrants quick consideration in direction of Thalassemia sufferers

In the long term, there should be an agency that regulates blood transfusion services in India. (Photo source: IE)

Thalassemia is an inherited genetic disorder. To survive, patients need a blood transfusion every 15 to 20 days. Almost 2 million people in India suffer from thalassemia. It is estimated that more than 10,000 children are born with this disease each year. Administering blood every two weeks becomes a real challenge when 1.9 million units (or 15 percent) are short of the WHO norm (as per 2016-17 data). Even data from the Department of Health and Family Welfare says that only 11 million units of blood are drawn each year while 12 million units are required. These numbers are from before COVID-19, a highly contagious pathogenic viral infection, wreaked havoc. After the coronavirus forced the government to enforce the lockdown, not only blood donation camps were affected, but also the transport of patients and donors.

In addition, these patients are asked about replacement blood donors every time they go to hospitals. According to Anubha Taneja Mukherjee, a member of the Thalassemia Patients Advocacy Group, blood replacement donation is not good practice and is not recommended by the National Blood Transfusion Council or NBTC guidelines.

Anubha Taneja said the problem is the lack of voluntary blood donation and the trend towards replacement donors. “A replacement blood donation can lead to infections like HIV, HCV, and other bacterial infections – called transfusion-borne infections – and even death,” she said.

“Those deaths that do not occur because the patient did not receive the blood required but because the patient did not receive the safe blood should also be counted. This happens because either the donor carried the infection or because the screening was incorrect. There are cases where appropriate testing for transfusion-borne infections has not been done, ”added Anubha Taneja.

The situation has worsened during the pandemic when Jharkhand fell into the state of death from lack of blood. In Bathinda, four thalassemia patients between the ages of 8 and 13 tested positive for HIV.

“There are so many unreported cases. Often times, parents are so poor that they cannot go to the cities just to hear that blood is not available. So just give. We don’t know whether these cases will be reported or not, ”she said.

In other states, patients with thalassemia must have a helter-skelter for blood before each transfusion. Shivangi Amrti, a thalassemia patient living in Delhi, said arranging blood, which is as common as type O +, is a difficult task during a pandemic.

“There is an acute blood shortage during the pandemic and it is very difficult to find a blood type as common as O +. That makes our life very difficult. And this problem will persist until the blood banks run out of blood. Most of the time they ask us to find replacement donors as they have no other options, ”she said.

Blood banks also have difficulty supplying thalassemia patients with blood as there are hardly any volunteer donors. Dr. Anju Verma of the Rotary Blood Bank (RBB) in Delhi said they ask patients to bring the donor and then give patients blood in exchange. “That’s how things happen.”

“Before the pandemic, we collected around 2,000 units in a month, and now we can’t even collect 200 to 300 units. At the moment fewer blood donation camps are being organized and we hardly see 15 to 20 people in a camp. People have to get in touch, otherwise there will be a major blood shortage, ”added Dr. Verma added.

Even now, after the lockdown, while the Red Cross is holding blood donation camps, not all blood banks are doing so. A concerted effort by the state governments within the framework of NHM is required. Government blood cells under the National Health Mission (NHM) should campaign on social media, radio, etc., and hospitals should be encouraged to hold blood donation camps rather than relying on patients to have their transfusion due every time their transfusion is due. Organize donors.

This problem is far greater

Experts believe that the problem is not just that people are dying from the unavailability of blood, but that it is much more complicated. During the pandemic, some patients had to do blood transfusions in neighborhood hospitals while having to come to terms with the poor quality of care, particularly the blood test method.

The reason is that thalassemia management and care are not standardized. In addition, the security and priority treatment mandated under the Disability Rights Act 2016 (RPWD) can hardly be implemented by local states.

A body that regulates blood transfusion services

In the long term, there should be an agency that regulates blood transfusion services in India. Accountability is given to a single authority. Who will you be reaching right now in cases like transfusion infected blood transfusions at Bathinda’s civil hospital? The National Aids Control Organization (NACO) has primarily the mandate for HIV but monitors nearly 1,100 blood banks, while NHM has the remaining blood banks and is primarily responsible for thalassemia. The National Blood Transfusion Council is not even mentioned in the Drugs and Cosmetics Act, which governs blood transfusion services in India. The guidelines of NBTC and SBTC are voluntary and non-binding! When a state blood transfusion council (SBTC) issues an instruction, as it did some time ago, to avoid substitute donation and encourage voluntary blood donation, the blood banks are therefore not bound.

“After blood banks have obtained licenses to operate under the Drugs and Cosmetics Act, they may or may not follow NBTC’s guidelines. Therefore, it is imperative that the Department of Health and Family Welfare consider setting up a blood and blood components regulator under an ordinance on blood instead of the Medicines and Cosmetics Act implemented by officials who are experts in medicines, not blood, “you said

In addition, the government should take steps to raise awareness about the prevention of disabilities such as thalassemia under the RPWD Act 2016. If the government had also launched a campaign like TB Harega Desh Jitega for thalassemia, we might have seen a much lower blood requirement. On the treatment side, too, new therapies that require a reduction in the frequency of blood transfusions must be investigated and promoted by political decision-makers in addition to bone marrow transplants.

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