Thalassemia and the RPD Bill in India
By Namitha A Kumar
Disability is a complex category which in itself is built around exclusions. Globally and locally, the term disability has been used to refer to people with locomotor as well as sensory impairments and certain multiple disabilities. In India, so far, disability legislations like The Persons with Disabilities (Equal Opportunities, Protection of Right and full Participation) Act 1995, the National Trust Act 1999, the Mental Health Act 1987, and Rehabilitation Council of India Act 1986 have focused solely on locomotor impairments, sensory impairments, developmental disabilities, and psychiatric illnesses. According to the PWD Act of 1995, disability refers to:
- low vision;
- hearing impairment;
- locomotor disability;
- mental retardation and
- mental illness
Narrowing the category of disability in this way exacerbates in-built exclusions and fails to capture the nuances and complexities of other disabling conditions. People with chronic/genetic/rare disorders experience disabling limitations but remain outside the purview and protection of disability legislations. What disability legislation in India captures are the visible disabilities, thereby excluding the invisible disabilities like chronic/genetic/rare disorders. Essentially, the message that disability legislations in India conveyed to people like me with a genetic disorder like Beta-Thalassemia was that “you are not counted here!”
At this point, it would be pertinent to examine some of the complexities in defining the contentious term ‘disability’ in order to debate what can be included and what cannot be included. According to Article 1 of UNCRPD, “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” While the definition does not specify types of disabilities, it is implied and understood that physical disabilities would also include the invisible disabilities like Thalassemia, Sickle Cell Anemia, and Hemophilia. The World Health Organization (WHO) refers to disability as “an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; a participation restriction is a problem experienced by an individual in involvement in life situations.” I would like to pick out the following elements from this definition:
- activity limitations and
- participation restrictions
Using these three elements, I argue that Thalassemia and other invisible disorders should have always been included in the disability legislation and the current inclusion of Thalassemia in the draft RPD Bill (2011) lacks clear definition and seems to be tokenistic, rather than providing substantive access and inclusion.
First, going by the three elements of the WHO definition, Thalassemia clearly qualifies as an impairment. The Thalassemias are inherited blood disorders passed on through parental genes causing hemoglobin deficiency of varying orders from mild to moderate and severe. The two major types of Thalassemia are alpha and beta named after defects in the protein chain in normal hemoglobin or hemoglobin A. Four genes, two from each parent are essential to make sufficient alpha globin protein chains. Alpha thalassemia trait occurs when one or two genes are missing. This results in mild anemia and the person, then, is an alpha thalassemia minor. If more than two genes are missing, moderate to severe anemia occurs and the person is an alpha thalassemia major depending on lifelong blood transfusions, chelation therapy, and medical interventions for survival. Two genes, one from each parent, are essential to make sufficient beta globin protein chains. If one gene is affected, the person is a beta thalassemia minor and if both genes are affected, the person is a beta thalassemia major. Beta thalassemia minors have mild anemia, whereas beta thalassemia majors have moderate to severe anemia again requiring lifelong blood transfusions, chelation therapy, and medical interventions.
In both types of thalassemia – alpha and beta – most carriers (minors) have mild anemia which does not require medical intervention except nutritional supplements. Minors are healthy and can participate in all life activities. Alpha and beta thalassemia majors are those who would qualify under disability because the gene impairment in both types makes the person depend on lifelong blood transfusions and medical interventions for survival. It is important to note that thalassemia majors experience disabling limitations and restricted participation in life activities due to severe anemia. Most people require two units of blood transfusion every two weeks for survival along with iron chelation therapy in the form of subcutaneous/IV infusion/oral tablets to remove fatal deposits of iron in vital organs due to blood transfusions. Lab tests and other medical procedures are a part of the routine required for a thalassemia major to survive.
Children/adults with thalassemia major experience limitations in full and free life activity participation on account of chronic fatigue, breathing compromises, immunity compromises, and a range of co-morbidities including cardiac, respiratory, endocrine, and skeleto-muscular complications. Neither thalassemia minor or major is characterized by any visible feature (though there are certain facial features in thalassemia major, which are mostly detectable by clinicians and care-givers). My point here is a disorder being invisible is no justification for excluding it from disability legislations. Apart from the physical pain from this impairment, thalassemia imposes a huge financial burden on families due to expensive drugs and treatment not to mention the psychological implications of being a thalassemia major or caring for a child/adult with thalassemia major (Shaligram, Girimaji & Chaturvedi, 2007; Khurana, Katyal & Marwaha, 2012).
The presence of an impairment which entails a range of limitations and which does not allow for full participation in life activities would certainly qualify as a disability. Apart from the impairment per se, people with thalassemia also go through discriminatory experiences in education, employment, and financial inclusion. Thalassemia is not a visible disability and, therefore, one can go through life without ever revealing the presence of this disabling condition. However, most people with Thalassemia, whether in India or elsewhere, prefer to disclose the condition and keep people informed in the context of education, employment, and health insurance. What has been brought to notice through anecdotal evidence is the fact that disclosure leads to discrimination in many cases. Talking to two people with Thalassemia who narrated their experiences of discrimination in employment, I learnt that one of them, who had an MBA, went through a job interview successfully and even received a confirmed offer letter from a well-known logistics company in Mumbai. At this stage, she informed the HR manager that she was a person with Thalassemia. This led to an abrupt end in the job offer and she was informed that the company would not be able to take her on the basis of their health policy. The second person had a similar experience and was asked to leave the job as the company would not be able to grant the leave required for transfusions. People with thalassemia usually require just one or two days leave per month for transfusion. Refusing employment or terminating employment on these grounds is discriminatory and ought to be illegal. There have also been cases of children with thalassemia being targeted in schools and colleges for inadequate attendance, despite keeping the authorities informed of their leave requirements. Medical insurance in India is highly discriminatory and people with Thalassemia have been refused on the basis of non-coverage of pre-existing conditions.
Hopefully, the draft RPD Bill (2011) based on the UNCRPD would guarantee basic human rights outlined in Article 3 such as non-discrimination, full and effective participation and inclusion in society, equality of opportunity and accessibility for persons with Thalassemia as this could mean access to education and employment. Thalassemics India, a patient advocacy association, was extensively involved during the drafting of the bill. The community of people with thalassemia, families, care givers and the medical community welcomes this inclusion.
However, there is a loophole in the definition given in the draft bill which defines Thalassemia as “a group of inherited disorders characterized by reduced or absent amounts of hemoglobin.” While this is correct, it leaves out information about who is covered under the bill – Thalassemia major or minor or both? I have been debating this concern with a community of people with Thalassemia on Facebook (Thalpal is an international group). While we all believe that inclusion in this bill will pave the way for better access and inclusion, there is also the concern as to who the beneficiaries are. Would a Thalassemia minor qualify for a disability certificate? If so, would this ambiguous definition not be defeating the cause of those who really need legal disability status and protection, the Thalassemia majors? How will the people issuing disability certificates (the medical community) interpret the bill? Is there anything concrete and clear to guide them as to who qualifies for a certificate?
Since the definition is not clear who is being included – minor/major – there is this lack of reference to blood transfusion dependency. Comparing the situation of people with thalassemia in the US, it is evident that the protection afforded by the Americans with Disabilities Act of 1990 (ADA) enables people with thalassemia to access medical and health insurance, equal access to education and employment. The ADA, like the UNCRPD, does not deal with specific disabilities. It defines disabilities as “…a physical or mental impairment that substantially limits a major life activity.” The definition of Thalassemia in the RPD Bill can be reworked as: “Alpha/Beta Thalassemia major is a group of inherited disorders characterized by reduced or absent amounts of hemoglobin leading to a lifelong dependency on blood transfusions and other medical therapies.”
While we cannot predict how much the bill will actually contribute to the inclusion of people with thalassemia in India, we believe that the first step has been taken with recognizing thalassemia as a disability. Towards further steps in access to quality healthcare, education and employment and financial inclusion, I believe getting the definition right is extremely important. While I have spoken for Thalassemia in this piece, I also represent the other excluded communities of people with chronic/genetic/rare disorders like lysosomal storage disorders, Huntington’s disease, Behcets etc. Disability legislation in India would have served its purpose well only when it is able to take into account the range of disorders which have so far been invisible and marginalized.
Namitha A Kumar is a PhD Scholar at the National Institute of Advanced Studies, Indian Institute of Science Campus, Bangalore 560012. Contact no: 0-99010 73292. Email: email@example.com
The Rights of Persons with Disabilities Bill, 2011. Presented by Committee appointed by
Ministry of Social Justice and Empowerment Government of India, 30 June 2011.
Prepared by Centre for Disability Studies, NALSAR University of Law, Hyderabad, India
30 June 2011.
Khurana, Katyal&Marwaha.(2012). Psychosocial Burden in Thalassemia.Indian Journal of Pediatrics, 73 (10):877-880.
Shaligram, Girimaji&Chaturvedi.(2007). Psychological Problems and Quality of Life in Chidlren with Thalassemia.Indian Journal of Pediatrics, 74 (8):727-730.
For more stories, read Café Dissensus Everyday, the blog of Café Dissensus Magazine.