SOS... Pediatric HIV...

Nkosi Johnson said, “Care for us and accept us - we are all human beings. We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else - don't be afraid of us - we are all the same!"

The pin drop silence that filled the auditorium was broken by a thundering applause of the International AIDS Conference’s dignitaries at Durban in 2000 [1]. Johnson, a SouthAfrican boy who died at the age of 12, was yet another kid to fall victim to the dreaded and often stigmatized disease called AIDS. Although he died, his legacy lives on and continues to inspire millions of positive people and social workers to unite hands for the children [2]. Pediatric HIV is an issue that is crying for attention.. 1st June being his remembrance day, I dedicate this post in his honour.

Nkosi Johnson was born to a HIV infected mother in South Africa. He got infected with HIV in utero. The boy shot into headlines when a public school in SouthAfrica turned his admission application on medical grounds. Nkosi along with his foster mother Gail Johnson, resolved to fight out the school. In the process they stirred an entire nation’s conscience vis-à-vis pediatric HIV. The mother-son duo went on to found Nkosi’s Haven, a home dedicated to take care of HIV infected mothers and their kids. Nkosi Johnson became the torch-bearer for the cause of pediatric HIV/AIDS. When he died on June 1, 2001 he was the longest surviving person born infected with HIV.

The issue of pediatric HIV often receives a little lesser attention than what it deserves. A quick glance at the statistics can explain why it is so. Worldwide there are more than 35 million people living with HIV. This includes about 2.1 million children (aged less than 15 years)[3]. Of these 2.1 million children about 2 million live in the sub-Saharan Africa. The 2008 Epidemiological Factsheet on HIV and AIDS prepared by WHO puts the number of pediatric HIV victims in India at 8867 based on the reports of registrations in government-run health centers. The report also states there could be as many as 64000 pregnant mothers living with HIV. Of these only about 8816 mothers are under treatment to prevent mother-to-child transmission of the virus. Thus the real picture could be more frightening. Of the 6 million people living with HIV, pediatric victims represent only a miniscule proportion.

Just because the proportion of pediatric HIV is ‘insignificant’, they cannot be ignored. The issue of pediatric HIV is complicated in itself. The issue is further complicated by the children who are orphaned when their HIV infected parents die. These are the kids who are sentenced to death for no sins of theirs. The worst part of the story is that all these can almost be completely prevented. Although children born with HIV infection can be made a thing of past, we still watching it with our hands folded.

The issue has two sides. One is the supply-side. Medical treatments are available to prevent mother to child transmission(MTCT) of the virus. This means that even when a pregnant mother is infected with HIV, she can give birth to a healthy HIV-negative child. The rate of MTCT infection has been brought down to as low as 2%. But this needs constant medical care of the pregnant mother often from the first trimester of pregnancy. After child birth, the new born needs anti-HIV treatment upto 12 weeks or even more till their HIV status is confirmed. When this is done on a massive-scale consistently birth of HIV infected infants can be prevented almost wholly.

The demand-side of the problem is more complicated and delicate. Going by WHO statistics we have over 2 million children living with HIV out of which around 10,000 children live in India. Apart from these there are also children who have lost their parents to AIDS and thus have been orphaned. They need protection, medical care, education, nutrition and above all love and affection of the society. The opening words of this blog resonates this idea. Recent medical advancements have enabled people living with HIV to postpone onset of AIDS to as long as 15 years or even more. Thus children born infected can think of living into their 20’s and 30’s. These children need education and other support which any ordinary kid is entitled to. This would go a long way in making their short lives more useful ones.

There have been efforts from governments across the globe to address both supply-side and demand-side issues. India is one country where almost 100% of the pregnant mothers are scanned for HIV. Once diagnosed with HIV, they are put under AntiRetroViral(ARV) treatment. Private sector has come up with some solid efforts in this area. Several organizations across the globe have taken interest in pediatric HIV and done constructive work. Nkosi’s Haven and Clinton Foundation are some prominent example. In India, organizations like Hope Foundation, Desire Society, Prathyasha project of Mellow Circle have done some solid work towards this issue[4].

Still not all are okay. There is an urgent need to step up efforts in the area of pediatric HIV. One major obstacle has been the cost of ARV treatment. Most of the private initiatives are also solely dependent on the government-sponsored medicines. Like-minded people should unite to form powerful lobbies that can influence governments and pharmaceutical majors to come up with cheaper medicines. Funds need to be raised to support more private initiatives.

An AIDS free generation is not far away if ever we shall resolve to fight it.

Unite for Children. Unite against AIDS[5].

References:

[1] Nkosi Johnson’s speech :http://www.nkosishaven.co.za/

[2] Nkosi Johnson Page: http://zar.co.za/nkosi.htm

[3] http://www.who.int/hiv/pub/catsr_2008_en.pdf

and http://www.who.int/hiv/topics/paediatric/en/index.html

[4] http://www.desiresociety.org/projects.html, http://www.mellowcircle.com/prathyasha.html

[5] http://www.uniteforchildren.org/