The current guidelines
issued by the Ministry of Social Justice and Empowerment on 5th January 2018
include a scoring system for assessing thalassemia as a disability and a
guidelines issued by the Ministry of Social Justice and Empowerment on
January 5 2018 include a scoring system and a percentage grading for
assessing thalassemia as a disability.
- When the Rights
of People with Disability Bill was passed by the Parliament of India on
14.12.2016 it looked at disability as an evolving and dynamic concept. The
positive aspect of the bill included the inclusion of newer disabilities
like the blood disorders - sickle cell anemia, thalassemia and hemophilia.
- The Bill
currently includes 21 disorders and the central government is vested with
powers to increase the number of disabilities in its ambit
- However, the yardstick applied to measure disabilities like
locomotor impairment, visual and auditory disabilities in the current
guidelines is erroneous in the case of thalassemia which is a fluctuating,
progressive blood disorder.
After the passage and ratification of the
Rights of People with Disabilities Bill in 2016, there were still gray areas
and confusion on how thalassemia would be certified under the ambit of the
Bill. The thalassemia community had no disability identity card (due to lack of
guidelines for medical certification) even in 2017 and people with thalassemia
did not get income tax benefits under the disability bill
thalassemia community waited for a year to receive guidelines in certifying
thalassemia as one of the disabilities.
the new guidelines issued in 2018 with its scoring system and percentage grading
is not technically the correct method to benchmark a genetic, progressive
disorder. Thalassemia and sickle cell anemia
should be considered
on the lines of the Americans with Disabilities Act which allows for access to
all services just going by the fact that the person has the disease.
Essentially you are disabled if you are a thalassemia major or intermedia with
no percentage gradations.
‘The newly released guidelines (5 Jan 2018) from the Ministry of Social Justice and Empowerment has several gaps and loopholes. These guidelines need to be changed as thalassemia is not a standard disability but rather a genetic blood disorder with complications that vary among individuals.’
Scoring systems and percentage gradations do not
work for an unstable, unpredictable disorder with hugely varying phenotypes of
Even people with the same genotype present with different
responses to the disease and medications. No two individuals are the same, and
the disease can lead to varying complications at different points in a
lifetime. The scoring system essentially says that more the complication, the
higher percentage disability and greater access to benefits like affirmative
action in education and employment. If a person with thalassemia has
multi-organ failure or blood-related infections like HIV
or hepatitis, he/she is in no position to
avail the full benefits of the disability bill. This refutes the very idea of a
disability bill protection.
The idea of the disability bill is to ensure good health and
other rights for people with thalassemia. The disability bill has to protect
the rights of those with disabilities and provide equity and access to the
nation's services and facilities. Besides going through this scoring system and
disability grading, almost every person with thalassemia will frequently be
required to recertify their condition since thalassemia has many fluctuations and
complications. One month a person may just need to have one transfusion but
fall sick with a viral infection the next month requiring more transfusions and
iron chelation. It is irrational for these patients to recertify continuously.
Anyone with transfusion dependency regardless of the
duration and number should have access to the full range of rights and
protection in the ambit of the disability bill. Instead of a scoring system
and percentage grading, all thalassemia patients with transfusion dependency
must be considered at greater than 70% disability with full rights and freedom.
from the Thalassemia Community Leaders
The thalassemia patients and parent's communities, patient
groups, advocacy groups, and organizations have unanimously expressed their
displeasure over the current guidelines for benchmarking thalassemia as a
disability. The apex patient organization in Delhi, Thalassemics India led
by Secretary Shobha Tuli plans to appeal to the Ministry of Social Justice and
Empowerment (MSJE) to revise the existing guidelines.
According to Ms.
Tuli, none of the thalassemia patient groups were consulted when the guidelines
were being prepared. She points out that the gaps in the guidelines pertain to
percentage classification of the severity of thalassemia to receive disability
benefits. Ms. Tuli feels this is incorrect and every thalassemia major
patient should be treated under a single umbrella of disability without
percentage slabs on severity.
She gives the example of developed countries
where policies are simplified to treat thalassemia
major as a disability without any
further classifications. Had the MSJE consulted with patient groups perhaps
such erroneous guidelines would not have been released. Ms. Tuli reiterated
that "Thalassemics India plans to appeal to the MSJE to revise these guidelines."
Ms. Anubha Taneja Mukherjee who is a lawyer with
thalassemia and works with Thalassemics India makes it clear that the current
guidelines are not acceptable to the thalassemia community.
that globally, public policy-making has been a consultative process involving
stakeholders and rues the fact that the MSJE did not take into account patient
groups' views on benchmarking thalassemia as a disability. As a professional
lawyer, she has been a part of several policy-making processes with the government
and notes that when it comes to policies about the industry, the government
involves concerned stakeholders whereas on a sensitive human issue like
disability it chose to keep stakeholders outside the process. Ms. Taneja said
that a genetic disorder like thalassemia has too many variations among
individuals and cannot be standardized into percentage benchmarking like other
Dr. Latha Jaganathan, a doctor who is the managing director
of the Rotary-TTK Blood Bank, Bangalore has been working with thalassemia
patients from the past 30 years providing free, safe, tested blood transfusions
with counseling and care. Dr. Latha maintains that the guidelines must not
get into such detailed benchmarking since thalassemia is a progressive disorder
with ups and downs.
A patient who is 40% disabled today develops
complications all of a sudden and slides into the 60% disability slot. He/she
cannot be running around all the time for revaluation and recertification.
emphatically states that all thalassemia major patients must be considered 70%
disabled regardless of how many blood transfusions they get each year.
It is hoped that the community representatives and patient
groups will be able to work out with the MSJE to get these guidelines amended to
be more favorable and patient-friendly.
Thalassemia is a complex genetic blood disorder
where the gene coding for the production of hemoglobin is defective leading to
People with thalassemia need lifelong blood transfusions and
other therapies (like iron removal medications) for survival. Thalassemia is a
disabling condition not just because of chronic anemia but other co-morbidities
like organ damage, bone damage, and cardiac complications.
- 4th January 2018. New Delhi. Gazette Notification, Ministry of Social Justice and Empowerment, Department of Empowerment of Persons with Disabilities (Divyangjan).