In Search of Blood: Living With Thalassemia in the Pandemic
World Blood Donor Day: Blood banks are drying up in the pandemic. What of those who survive on blood transfusions?
(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.)
"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.
“In all my life, I’ve never had to go running around arranging a blood donor. Now, it’s a monthly struggle.”Sonam Madaan, 32.
For more than a year now, the world has been channelling its resources, time, and energy into tackling the global COVID-19 pandemic.
Patients with other severe illnesses have been coming under the wheels of this tunnel vision approach to COVID management, and they often go unnoticed.
What is Thalassemia?
First a quick rundown: Thalassemia is a genetic blood disorder marked by abnormally low haemoglobin production.
The inherited condition will typically be passed on from parents—sometimes even asymptomatic parents—who may carry the genetic mutation.
According to WebMD, some early signs to look out for in your baby include,
Slow growth in children
Wide or brittle bones
Pale or yellow skin
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.
“My parents tried every kind of medicine under the sun, from homeopathy to ayurveda, but the only thing that has kept me alive and well all these years is blood transfusion.”Sonam Madaan
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 Patients Advocacy Group (TPAG).
“Right from double masking, wearing gloves, using face-shields, having no accompanying attendants (in my case my mother) meant it was always an adventure going to the hospital to receive life-saving treatment.”Hemant
The Pandemic and the Dip in Blood Donations
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 Thalassemics 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.
“In the last camp we organised we were able to collect only 30 units of blood, when usually we would get 100 units.”Swati Tuteja
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.
“I have used many sources like donor database portals, requesting NGOs that help connect voluntary blood donors with patients during pandemic, and also requesting friends and families to look for blood donors.”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.
A Do-Over With No Lessons Learnt
The situation, however, has only turned worse in the second wave.
“It was bad the first time around, but now its definitely much much worse. COVID is so much more infectious and the severity has also been worse. People are more scared this time.”Swati Tuteja
"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.
“The hospital that we had been going to for years now, one fine day was turned into a COVID hospital. In such situations people are left scrambling to look for alternatives on short notice.”Swati Tuteja
"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.
“Each transfusion feels like a series of hurdles to be overcome—from finding a donor, arranging blood donation, getting covid test, finding admission at transfusion centre, while maintaining all precautions and dealing with the anxiety of exposure—has been extremely tough.”Priyanka
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.
“An adult usually requires 2 units of blood, and taking someone along with you who would be willing to donate that much each time is not always possible.”Swati Tuteja
COVID, Vaccines and the Hurdle of Mandated Deferral Periods
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.
“A person who has had COVID cannot donate blood for 18 days. We’ve had willing donors be turned away because they had only been COVID free for 14 days.”Swati
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.
Every Drop Counts: How to donate Blood Safely
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.
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