Chinks in the Strategy
Chinks in the Strategy
The most poignant part of the AIDS scenario is that children are being forced to share the burden of the curse
By Abhigyan
| AIDS Day is observed across the globe on December 1, India has entered the third, and perhaps the most perplexing decade of its fight against HIV-AIDS epidemic. Today, less than a tenth of those who need second-line HIV drugs have access to them. These patients run the risk of developing resistance to drugs and can become a bigger threat to their community. |
Although medicines have had a salutary effect on the epidemic so far, yet we could head for big trouble if patients don’t adhere to treatment or fail to get it on time.
Indeed, while year on year the incidence of new infection among the general population and pregnant women has shown a significant decline that among the risk groups continues to be a cause for concern. As per the surveillance data of 2010-11, HIV among female sex workers in Mumbai, for example, was around 6%, way higher than the national prevalence of 2.7%.
However, the main sentiment on the eve of World AIDS Day was of positivity. The difference between HIV in 1985 and 2015 is that HIV positive people don’t really frighten others anymore.
Mumbai currently has over 30,000 people living with the disease. A senior NGO member said the disease is no longer a death sentence. But a doctor said the government programme faces problems that the officials aren’t ready to accept.
Paediatric HIV is a major problem in the India with most of the children acquiring the deadly virus from their HIV-infected mothers during pregnancy, birth and breast-feeding. But such children remain the least focused group. The human immunodeficiency virus (HIV) that causes Acquired Immunodeficiency Syndrome (AIDS) continues to be a major global public health issue, having claimed more than 39 million lives so far. HIV has infected men, women and children in the developed as well as the developing countries.
The WHO reported 23% of children in need received treatment in 2013 as compared to 37% for adults, pointing to a larger gap between services for adults and children living with HIV.
According to the United Nations Programme on HIV and AIDS (UNAIDS), 1.2 million people died from HIV related causes globally in 2014. There were approximately 36.9 million individuals living with HIV at the end of 2014 with 2.1 million people newly infected. The total estimated number of children under the age of 15 years living with this virus globally was 2.6 million at the end of 2014 with 0.22 million children newly infected and 600 children being infected daily. In 2014, 0.15 million children died from HIV related causes globally.
Sub–Saharan Africa is the most affected region with 25.8 million people living with HIV in 2014. The Asia-Pacific region carries the second greatest burden of this disease with 5 million people living with HIV and 0.34 million people becoming newly infected in 2014. The estimated number of children living with HIV in the Asia-Pacific region is 0.2 million of which 21,000 children are newly infected.
Cases in India
The estimated number of people living with HIV/AIDS in India was 2.1 million in 2014. Of these, women constituted 39% (0.75 million), while children comprised 7% (0.14 million). The adult (15-49 age groups) HIV prevalence at the national level has continued its steady decline from an estimated level of 0.41% in 2001 to 0.3% in 2014. Still India is estimated to have the third highest number of people living with HIV/AIDS, after South Africa and Nigeria, with around 0.11 million annual new HIV infections among adults and around 14,500 new HIV infections among children, as reported in 2011.
As per the 2012-13 estimates, four high prevalence States Andhra Pradesh, Karnataka, Maharashtra and Tamil Nadu account for 53% of all HIV infected population in the country. Prevalence of paediatric HIV is also high in these states. A study reported prevalence of 11.2% among hospitalized children in 2002 in Mumbai while New Delhi reported 8.9% in 2006. Thus, paediatric HIV is a major problem in the Indian context.
As a result of scaled-up HIV prevention services, the annual number of newly-infected children in 2014 was reduced to 0.26 million in low-and middle income countries, which was 35% lower than in 2009. In case of HIV positive children neither or both of their parents may be infected with HIV and are more likely to die; and thus render the children orphan.
Transmission routes
The predominant mode of transmission of HIV in children is vertical, but there seems to be a variation in rates by demographic studies in such Mother-to-Child Transmissions (MTCT), with results ranging from 70-98%. Probable transmission through blood transfusion, and use of non-disinfected hairdressing implements such as clippers, shaving blades and scissors were also recorded. Use of unsterilized needles for injections is a common practice prevalent in rural, semi-rural, and urban slums where, majority of the population resides. Sexual abuse is another risk factor and highly prevalent although often unreported.
Most significant shortcoming in the response to paediatric HIV remains the woefully inadequate prevention of mother-to-child-transmission (PMTCT), allowing a large number of children to be born with HIV in the first place, in spite of it being largely preventable.
Sexual transmission of HIV being the most common route of acquisition, children remain the least focused group and they share the burden of the epidemic at an early age. Children affected by HIV/AIDS have to face many problems in addition to their own illness, the parents of the child may not be able to provide proper nutrition and treatment to the child.
When children start developing clinical manifestations and need treatment, they have to travel long distances for accessing care and support at tertiary institutions. This places an extra burden on the patients, who are already struggling to cope with their illness. In many families, they are caregivers for sick parents who have AIDS. An increasing number of such households are headed by children.
UNICEF finds that infection can lead children to drop out of school; and infection of parents can lead children to engage in child labour in order to survive. Many children who are orphaned were highly exposed to abuse, exploitation and neglect because of loss of a parent(s) or guardian. They experience a great deal of social stigma as well as discrimination. This resulted in children being marginalized from essential services such as education and health.
There are multiple barriers to ART adherence and follow-up, like
(i) Financial barriers – unemployment and economic dependency
(ii) Social norm of attending family rituals and fulfilling social obligations (socio-cultural barriers)
(iii) Patients’ belief, attitude and behaviour towards medication and self-perceived stigma
(iv) Long waiting periods, doctor-patient relationship and less time devoted in counselling at the centre.
In rural areas, a major issue is an all-pervasive stigma and the resultant discrimination at all levels, not only within the family and community, but also in school and even healthcare service facilities. The discriminatory attitude of service providers discourages both children and their parents to access the ART centres.
In many cases, this leads to non-disclosure of the HIV positive status of the child, thus keeping the child away from available services and interventions. Some other factors are also associated with delayed entry such as being diagnosed at earlier calendar years but reporting late, being diagnosed after knowing that the mother was HIV positive, belonging to lower communities, age <18 months, female gender, and living >90 minutes from the ART centre.
Over-dosage (heavy pill burden), cost and access to transportation, lack of understanding of the benefit of taking the medication and lack of nutritional support are also the barriers to adherence to Highly Active Anti Retro-Viral Therapy (HAART).
What we can do?
A focused effort is, therefore, needed to address issues like illiteracy, lack of awareness and limited access to information, education and communication (IEC). The gross lack of awareness about paediatric ART services in the rural areas and also the fact that these services are being provided free of charge by the Government needs to be addressed by a rural and child-focused IEC strategy. In addition, media planning to bridge the information and knowledge gaps on the availability of paediatric ART is crucial.
In order to avoid significant family expenses for travel, testing, and treatment of opportunistic infections (OI), innovative methods to bring ART to the doorsteps through creation of link ART centres (LAC) or making ART and testing facilities available in community care centres (CCC) can be the alternative for dealing with this situation. Linkages with rehabilitative services and some income generation programme (IGP) activities especially designed for the rural population could be a big encouragement. Training of doctors, paramedics and counsellors in paediatric orientation and counselling skills is, therefore, of paramount importance for providing meaningful ART.
In addition, policymakers could ensure programme integration related to HIV and AIDS. Private sector involvement including non-governmental organisations (NGOs) with health delivery systems where the State can act as regulator in the paediatric HIV programme is recommended for improving the coverage and delivery of goods and services involved in standardised treatment. The civil society can play a vital role in the prevention, care and support services.
Blurb: As per the 2012-13 estimates, four high prevalence states – Andhra Pradesh, Karnataka, Maharashtra and Tamil Nadu – account for 53% of all HIV infected population in the country. Prevalence of paediatric HIV is also high in these States. A study reported prevalence of 11.2% among hospitalized children in 2002 in Mumbai while New Delhi reported 8.9% in 2006. Thus, paediatric HIV is a major problem in the Indian context
NICEF finds that infection can lead children to drop out of school; and infection of parents can lead children to engage in child labour in order to survive. Many children who are orphaned were highly exposed to abuse, exploitation and neglect because of loss of a parent(s) or guardian. They experience a great deal of social stigma as well as discrimination. This resulted in children being marginalized from essential services such as education and health