(14 June is celebrated as World Blood Donor Day. In light of it, FIT is republishing this story with the hopes of encouraging more people to donate blood during the pandemic for those who frequently need it.)

"We're scared ourselves, how can we ask others to come out to donate blood?" says Swati, a young patient of thalassemia.

It's a difficult position to be in, and there are very few ways out of it.

On the one hand, the fear of COVID on top of enforced lockdowns has kept people from step out, especially if it's to a hospital when they strictly don't have to.

On the other hand, Swati and other patients of Thalassemia like her depend on these donations for their survival.

For more than a year now, the world has been channelling its resources, time, and energy into tackling the global COVID-19 pandemic.

FIT has previously brought you stories of people with Haemophilia and kidney patients on dialysis in the pandemic.

We now speak to patients of Thalassemia— people who heavily depend on blood transfusion for their survival, who have been struck by the acute shortage of blood supply in the country.

First, a quick rundown: Thalassemia is a genetic blood disorder marked by abnormally low haemoglobin production.

According to WebMD, some early signs to look out for in your baby include,

• Slow growth in children

• Wide or brittle bones

• Enlarged spleen

• Fatigue

• Weakness

• Pale or yellow skin

• Dark urine

• Poor appetite

• Heart problems

Symptoms of Thalassemia show up at birth, and the disorder is usually diagnosed at a young age.

Both Sonam and Swati, two members of Thallasemics India that we spoke to, were diagnosed at 6 months of age.

Around 200,000 people in India alone rely on regular blood transfusion to manage their thalassemia, a fortnightly procedure that has seen major disruption during the COVID pandemic.

"Every visit to the hospital since March 2020 has been a mission in itself," says Hemant, a patient of Thalassemia and a member of Thalassemia Patient's Advocacy Group (TPAG).

Swarmed with worries, anxieties, fears, and constant dread on a daily basis, the thought of blood donation may not exactly cross our minds when battles are being fought on so many fronts.

This is made worse by the fact that since the pandemic began, no major blood donation camps have been organised in the country.

Our Blood banks are drying up and what we have is a crisis in the making.

"We need to get transfusion done around twice a month. This has become really difficult with the pandemic. People are scared to come out and donate blood," says Swati.

Swati manages a network of thalassemia patients and donors for Thalassaemias India and is in charge of arranging volunteers for those who need it.

"Our usual avenues, schools, colleges, offices are shut, and although we have organised some blood donation camps, it's been very few," she says.

And how have they been making up for the lack of public blood donation drives?

By calling potential volunteers by phone.

Swati and her colleges spend their days incessantly ringing people, letting them know of the dire condition patients of thalassemia are in, and requesting them to consider donating blood.

"We also use social media, networking apps and WhatsApp groups to spread the word," she adds.

But, more often than not, thalassemics are left to arrange blood for themselves.

"I have had to run from pillar to post to arrange blood donors for all my blood transfusions for the best part of the past 14 months," says Hemant.

Sonam is thankful that she has a strong orbit of family and friends who step up to help her out, "but that doesn't always work, and not everyone has that option," she adds.

The situation, however, has only turned worse in the second wave.

"Now, people hang up when we call, or they simply don't respond," she adds.

Apart from this, blanket COVID response measures pose other obstacles.

"It has been crisis upon crisis, to be honest, and added to that are the ad-hoc rules made by the hospitals," says Priyanka, another member of TPAG.

Sonam and Swati speak of how government hospitals have made it mandatory to have negative RT-PCR reports to get the procedure done.

"Our entry ticket," Sonam calls it.

These reports don't always arrive on time, and can get expensive.

But it doesn't end there. To combat the COVID caseload in the second wave, many hospitals (both government and private) were converted to 'COVID only' facilities.

Sometimes overnight and without preamble.

"A lot of people come from out of town just to get transfusion done. I know people who came from Meerut by train and only found out the hospital has shut down when they got there," she adds.

So dire is the crisis of blood supply shortage that patients of thalassemia are now required to bring with them volunteer donors to replace the blood they use up at the blood banks.

This wasn't the case earlier where people with thalassemia, among other groups that are dependent on blood transfusion, were exempt from this clause.

It isn't always an inability or reluctance to donate, sometimes the thing that keeps a patient from getting the blood they need, are just stringent technicalities.

There is also the guidelines for vaccinated people in India.

According to the latest government guidelines, people getting either of the COVID vaccines can only donate blood 14 days after getting the jab.

The blood donation deferral period in India was 28 days before it was revised by the National Blood transfusion Council (NBTC) taking into consideration the blood shortage crisis in the country. Especially considering most blood donors fall in the age bracket of 18-50 years of age, the age group that is now getting vaccinated.

This mandate also puts an unfounded fear of donating blood after getting vaccinated, when in fact it is safe to do so.

According to the American Red Cross, people who receive any of the inactivated or mRNA-based vaccines—including India's Covaxin, Covishield—do not need to abstain from donating blood as long as they are symptom free.

Thalassemics and volunteers in India continue to lobby in favour of scrapping this mandate altogether.

The pandemic may have made it difficult to do so, but there are still ways to donate blood safely.

• You can directly connect with patients looking for blood donors on websites and apps like friend2support, and e-Rakht Kosh.

• Thalassemics India provided pick-up and drop-off facilities for volunteers who are unable to, or are wary of travelling by public transportation.

• They also arrange for exemption passes that will allow you to travel (cross state borders if need be) to donate blood during lockdowns and curfews.

Although government regulations require you to wait for 14 days before donating blood after getting vaccinated, know that it is absolutely safe to do so and consider donating as soon as you're able to.