Problem Of Leprosy in Society and process of empowerment through Government Aid, writes Dr Arup Paul

//Dr. Arup paul//

Every year on 30th January anti Leprosy day is observed to commemorate the death anniversary of our father of the nation Mahatma Gandhi. During his life time Gandhi came forward many times for upliftment of leprosy afflicted persons. He earnestly worked to remove stigmata associated with disease in his lifetime. Mahatma Gandhi even used to attend leprosy patient and used to give nursing care and dress their ulcer.
So, in the spirit of Gandhi, IADVL, Indian association of dermatologist, venereologist and leprologist observes the anti leprosy day on 30thJanuary with different kinds of activity to raise awareness of the disease in general population. Leprosy, the disease is as old as mankind, caused by a bacteria mycobacterium leprae. Symptoms of the disease generally occur after long time generally 5 to 9 years of getting infection. The disease mainly affects skin, peripheral nerves, bones and eye. Untreated leprosy affected person is the source of transmission of bacteria. It spreads from respiratory tract of infected person into environment through droplet from nose, mouth. Though India has achieved elimination of leprosy as public health problem in 2005 but still it’s a matter of concern. There were 127558 new cases of leprosy detected globally in 2020.And India accounts for 53.64% of global cases. It is one of the neglected tropical diseases which needs more attention. The disease is very unpredictable and runs a long course. So, the key here is early detection and treatment with adequate therapy. Whenever we see a person with a white patch with impaired sensation, tingling and numbness sensation or nerve thickening immediately that person should be sent to a Dermatologist or any nearby Leprosy centre. But due to ignorance a good number of patients report late with various deformity due to nerve damage ( viz claw hand, foot drop, corneal ulcer etc).Also due to social stigma patients report late. What makes leprosy unique is the presence of deformity by which general people can make out a leprosy afflicted person very easily and the presence of deformity is main reason for discrimination.
In presence of deformity along with medical treatment patient needs multidisciplinary care in the form of physiotherapy, corrective surgery and rehabilitation. Most of the leprosy patients are from poor socioeconomic section. Poor housing condition and lack of nutrition also help in propagation of disease. Due to the disease affliction they become financially drenched.

In this context I would like to mention that Govt of India under Pwd (person with disability) act 2016 provides financial aids along with host of other benefits to person with disability. There are 21 categories of Disability and leprosy cured person with deformity falls under locomotor disability categories. Different grades of leprosy disability are :
Grade 0: no anaesthesia, no visible deformity or damage.
Grade 1: anaesthesia present, but no visible deformity or damage.
Grade 2: visible deformity or damage present.
. Our patients are ignorant and in general population also knowledge regarding this benefit is lacking.
It is our duty to guide them in getting the benefits to uplift their living condition. Patient with deformity can collect form from respective Joint Director office and they can get the disability certificate from assigned Govt doctor in Medical college or District Hospital. In our leprosy case after making diagnosis as a Dermatologist we send patient to Orthopaedics Doctor if we see any deformity. Then orthopaedic doctor assesses the case to determine the percentage of disability. For Percentage of disability there are specific chart and they assess muscle strength also. After examining different part of body with deformity they give a composite score. Generally, if a patient gets 40% or above in disability certificate then he or she is entitled to get maximum benefit.
Once they get certificate patients need to make UDID, unique disability ID. There is online portal for registration of UDID. All persons with disability certificate can apply. Four types of details are required
a. Personal details including address
b. Disability details
c. Employment details
d. Identity details.
This card shall bring host of benefits to person with disability and patient need not bring multiple documents. It helps in stream-lining the tracking of the physical and financial progress of beneficiary at all level of hierarchy of implementation from village level, block level, District, state and National Level.
UDID is linked with Adhar and Bank account of beneficiary. As these process can take time so the need of cooperation from other sector those who work for person with disability is important.
In my case I am Working with a National level NGO SAKSHAM who work for betterment of person with disability. They make the process of making UDID and disability certificate easier for our patients. That’s why collaboration is important in getting the things done. My job is to identify such patients and bridge the gap of their lack of information and place them in right place so that they can get their benefits.
Leprosy is not only a bacterial disease but it’s a social problem. All section of people should come forward for helping leprosy affected persons and try in the process of rehabilitation so that they can live life with dignity.
This year theme of anti leprosy day is ACT NOW, END LEPROSY. We should try to give proper message to general public and curb superstitions and related stigmata with the disease.
For this IEC (information, education &communication) strategy can be applied involving all sectors of population and different stakeholder. For example, different school, colleges, university and other organisation can conduct seminars, public rally, quiz involving students, art exhibition depicting facts of leprosy. Nonmedical institution can take help from medical professional working in this sector as a resource person. Also we can invite leprosy cured person to share their experience and success of treatment by Multi Drug(MDT) therapy. This can give a ray of hope to persons suffering from leprosy and as a whole in general population.
We can highlight about few less talked but more relevant topic in such programmes. One such topic is vocational rehabilitation of leprosy patients. A lot of work in the field of rehabilitation is to be done. Occupation should be tailor made depending on their type of deformity. They should be informed about Self Help Group (SHG) and encouraged to make such groups so that they can collectively work for overall betterment.

At last we should remember JOY is more infectious than LEPROSY.
KNOW leprosy, NO disability.

(Dr Arup Paul is MD, Dermatology)