8th May is observed as International Thalassemia Day (ITD) world
over. This time it was 26th ITD. We had planned a big congregation of
Thalassemics, Govt. officials and doctors involved in management of
thalassemia at constitution club but due to lockdown because of Covid
19 pandemic we converted it into a webinar on Saturday 9th May 2020
from 3pm to 5pm. A galaxy of eminent panelist including Dr Androulla
Elefetheriou, Executive Director Thalassaemia International
Federation, Mr T D Dhariyal former State Commissioner for Persons
with Disabilities, GNCT of Delhi & Dy Chief Commissioner for
Persons with Disabilities, GoI, Dr VP Choudhry, former Prof. & Head
Dept. of Hematology, AIIMS, Dr Jagdish Chandra, former Director
Principal LHMC & Associated Hospitals, Mrs Vinita Srivastva,
National Senior Consultant & Co-ordinator Blood cell –NHM,
MoHFW Government of India, Dr VK Khanna Chairman, Dept. of
Pediatrics, Institute of Child Health, SGRH, Dr Dinesh Bhurani
Director Dept. of Heamato-oncology & BMT RGCI & Research
Centre, Ms Sangeeta Wadhwa, Psychologist founder of YTA (YOUTH
THALASSEMIA ALLIANCE), Mrs. Tanu Thakral, Former Patient
counselor with NTWS. The webinar was in the format of question
answer session. Dr JS Arora moderated the webinar. The language of
the webinar was Hinglish (Hindi-English mixed).

In his opening remarks Dr Arora welcomed & congratulated the faculty
and the audience on the occasion of 26th International Thalassemia
Day. He explained the objectives and pressing situation of organizing
this webinar.

Ms Sangeeta Wadhwa highlighted the specific problems faced by
thalassemics during Covid pandemic was - how to get blood ? She said
besides blood, transport and availability of medicines were other major
issues.

She said she helped the fellow thalassemics by supporting them
emotionally and arranging donors for them in Mumbai.

When asked Serum Ferritin or MRI T2* which is better way to
ascertain the iron overload and how frequently these tests should be
done Dr VP Choudhry said serum ferritin is to measure circulating iron
and MRIT2* is to measure stored level, there is no liner correlation
both are important Serum ferritin should be done every 3-4 months and MRIT2*
should be done once a year.

When asked whether Thalassemia minor can donate blood, he said
anybody who is in the age group of 18- 65 years having hemoglobin
level above 12 gm/dl can donate. Parents of thalassemia major are
obligatory thalassemia minor they can also donate blood if their
haemoglobin level is within normal limit. Rather I would stress they
must donate during these hard time when there is acute shortage of
blood.

Dr Androulla Elefetheriou while replying to a question If Covid 19
infection can be transmitted through blood transfusion? She said the
risk of transmission is only theoretical. Patients treatment should
remain uninterrupted, blood supply should be increased, keep your
chelation on. She added the patients who are getting proper treatment
are not in the danger, if they follow the national guidelines for social
distancing, wearing mask and personal hygiene then they are not more
prone to infection than general public.

Dr Jagdish Chandra replying to a question informed that in India there
is no thalassemic patient reported having covid 19. But in Italy 11
patients are reported as having Covid 19 and they were not showing
m o r e s e v e r e s y m p t o m s a n d t h e y w e r e t r e a t e d w i t h
hydroxychloroquine. He added that there is no recommendation for
using hydroxychloroquine as prophylaxis for public. It was advised by
ICMR for hospital workers only.

While asked if covid 19 test is compulsory before transfusion Mrs
Vinita Srivastava replied that it is not compulsory yet. But hospitals are
asking for safety purpose of themselves as well as for patients. Some
hospitals are using this strategy. She advised patients to use E Raktkosh
portal for online request for donors. It shows current status of blood
units/components available in blood banks all over India. Once you
register for requirement of the blood you will get a message for
availability of blood at a blood bank near to you within 1 - 2 days.

Regarding Coal India BMT project she said process has been held up
because of Covid 19, after the pandemic is over we will do 200-300
transplantations.

When asked what tests should be done to monitor side effects of iron
chelators and how frequently? Dr VK Khanna said CBC every one to
two weeks and in every episode of fever patient should go for CBC,
liver & kidney function tests once in two months, yearly hearing and
eye check-up, also in every six month go for sitting and standing height
check-up.

When asked what is the best age to undergo BMT and till what age one
can think of transplantation if donor is available Dr Dinesh Bhurani
said that in Covid era we should postpone all the transplantation but
maintain chelation and haemoglobin till then. Patients age should be 2
years to 15 years some people can think up to 18 years but I prefer
earlier is better

Mr TD Dhariyal former State Commissioner for Persons with
Disabilities, GNCT of Delhi & Dy Chief Commissioner for Persons
with Disabilities, Govt. of India while replying to questions on
disability said that Thalassemia will get the rights as all disabilities
persons were getting, except job reservation. They cannot be
discriminated in the method of employment or treatment. There are
social security schemes like pension, land allotment, 5% reservation in
educational admission and reasonable accommodation for which they
are eligible. Replying to a question “How to get Disability certificate
and UDID card,” he said that go to any nearby District Govt hospital
and give application; there are members who will do assessment, within
one month you will get the certificate.

Login to www.swavlambancard.gov.in to get UDID card, if you have
certificate you will get UDID card online in Delhi.

He said that district disaster management committee should have
segregated data how many thalassemia patients are affected