In the 1950s, a drug called thalidomide was given to pregnant women to control morning sickness. The drug, a teratogen — an agent or factor which causes malformation of an embryo — was responsible for the birth of thousands of disabled babies who had reduced or missing arms and legs. As a rule, birth defects such as these are rare and sporadic events. Thalidomide was different as it caused an epidemic of birth defects. There was a realisation that preventing birth defects and providing care to newborns with severe disability is a public health responsibility, requiring a range of specialised services. Parents required information on the disabling condition as well as access to rehabilitation services. Contact with other parents was needed to overcome stigmatisation and guilt and receive further advice on mainstreaming life around the child’s impairment. Finally, professional, psychosocial counselling and support services were needed.
The Zika parallel
Many years after the thalidomide disaster, the Zika virus has the potential to cause a similar public health tragedy. Like Brazil, where hundreds of babies were born with microcephaly, a similar catastrophic epidemic is a possibility in India. The mosquito that spreads dengue and chikungunya also spreads the Zika virus. In India, dengue outbreaks are routine occurrences each year, so the likelihood of a catastrophic epidemic of Zika virus-associated microcephaly is not an idle speculation. An additional area of concern is the difference between Zika on the one hand and dengue or chikungunya on the other. While the latter conditions occur soon after a mosquito bite, the presence of the Zika virus will be known six months later, after the birth of microcephalic infants. In the meantime, the virus will have ample time to spread through the population unless public health interventions to control mosquitoes are implemented on a warfooting.
There are repeated assurances that India is prepared to tackle the Zika virus, with activities centring around mosquito control measures. While this is required to control the spread of the Zika virus as well as malaria, dengue, chikungunya, Japanese encephalitis, kala-azar and filaria, there is little mention of the lack of public health preparedness to address the needs of babies born with microcephaly. India is a signatory to all the major international declarations on disability and child rights. A plethora of policies and guidelines are available, most of which are on paper but with little translation into services. The policies are focussed on the empowerment of persons with disabilities, addressing issues of employment rights, and ensuring an environment that does not hinder the mobility of the disabled person. A microcephalic child is not likely to achieve the potential for employment or have sufficient mobility to benefit from the fruits of the Accessible India Campaign. For these children, their primary right is the right to rehabilitation and care especially if poor public health activities permit the Zika virus to spread through the country.
A huge divide
At present, there are few, fragmented public services for the rehabilitation of children with severe disabilities. Most available services are delivered by private providers and non-governmental organisations. To a large extent, these are available to those who can afford to pay, underlining the public responsibility to provide care to children from the most vulnerable strata of Indian society. A huge investment is required to functionalise existing services. Current district rehabilitation centres are suboptimal facilities, with the responsibility of running these centres transferred to non-governmental organisations. Most doctors are unaware of these centres, so parents learn about rehabilitation by word of mouth. Staff need to be trained in sensitive counselling methods. Counselling services also need to be extended to antenatal services.
One wonders how long it will take to build up this service. But with reports that three Zika cases were detected [in north India] and requisite public health measures not implemented, there cannot be a denial of public responsibility. In case Zika were to spread, it will be the right of affected parents to demand and receive standard care to ameliorate the suffering associated with microcephaly.
Dr. Anita Kar heads the school of public health at Pune University