India & Other Global Networks
India has seen so much economic growth and development in recent years, that it is no longer eligible under Australian International Development policy for AusAID funded assistance. However, CLAN is still committed to learning about life for children living with chronic health conditions in India, and supporting communities of children in sustainable ways.
CLAN has been learning from families and health professionals about the situation for families in India with Congenital Adrenal Hyperplasia (CAH), and we welcome these pages being used by Indian families as a resource for their CAH community until such time as their own CAH Community web-site is developed.
History of access to CAH medicine and healthcare in India
Prior to December 2001, reliable affordable access to medication was a desperate issue for families in India. Hydrocortisone was not always available, and doctors had to use prednisolone and sometimes dexamethasone to manage their CAH patients. Now however, India enjoys the enviable position of having Samarth Pharma, a pharmaceutical company based in Mumbai (old Bombay) that is now producing both hydrocortisone and fludrocortisone tablets.
Neonatal screening is not policy in India yet, even for hypothyroidism, so screening newborn babies for CAH is still many years away. However, a pilot newborn screening trial of 18,000 babies carried out in India in 2000 demonstrated an incidence rate of CAH of 1:2,575 which is significantly higher than the 1:15,000 babies quoted for many countries of the world.
Firstly, communication is complicated by the many different languages in use throughout the country. Hindi is used by many people in the North, but not in the South. English is widely used, but certainly not by everyone.
Secondly, whilst the Internet is an ideal tool for disseminating information, unfortunately those who need it most have least access. For the very poor families in India, access to the Internet is very unlikely.
Finally, there is currently no organised set-up for the treatment of CAH in India. Some patients may be seen and treated by their primary physician, whilst others may be referred to a tertiary treatment facility. There is no way of knowing how many people are living with CAH in India.
Although the medication is now available in India, poorer families still struggle significantly trying to live with CAH. Some can barely afford the drugs, and even monitoring with 17OHP tests is difficult, because it can cost around Rs.600 (US$13) and can be beyond the reach of some.
Cultural taboos surrounding the issues of gender and ambiguous genitalia are also very complicated in India. As one doctor in India explained, correct gender assignment of virilized female babies can be difficult when many babies are born out of hospital in villages. In addition, there is a tendency for parents to have a bias for male children, so it can be difficult for parents to accept that their male child is in fact genetically female. A reversal of sex rearing is usually unthinkable for families in this situation, and there are a number of virilized female CAH patients being raised as males. This experience is not unique to India however, and CLAN has contact with doctors of many patients in similar circumstances in a number of countries. In fact, it may be that these patients would benefit from their own unique support group and networking together.
So What Can Be Done To Help?
There is so much that can be done to help these families, and there are many very enthusiastic and caring families and doctors in India who are keen to work to help. Networking and using existing resources as effectively as possible will be hugely important. We hope there are useful links within the pages that follow, and please contact us if you would like any added.