Gaps in Guidelines for Certifying Thalassemia as a Disability

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 percentage grading. 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. The thalassemia community waited for a year to receive guidelines in certifying thalassemia as one of the disabilities. However, 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.

Scoring systems and percentage gradations do not work for an unstable, unpredictable disorder with hugely varying phenotypes of the disease. 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.

Thoughts 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. She analyzes 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 disabilities.

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. She emphatically states that all thalassemia major patients must be considered 70% disabled regardless of how many blood transfusions they get each year.

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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

Thalassemia is a complex genetic blood disorder where the gene coding for the production of hemoglobin is defective leading to chronic anemia. 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.

References:

1. 4th January 2018. New Delhi. Gazette Notification, Ministry of Social Justice and Empowerment, Department of Empowerment of Persons with Disabilities (Divyangjan).

Source-Medindia