In Vietnam, many parents cannot afford to buy the drugs their children need. One family told us that to buy one bottle of tablets cost the equivalent of 16 bags of rice. Other families were forced to spend one-third of the total family income to buy drugs to keep their child with CAH alive. If a child needs an operation, it is done free until the age of 6 years but after that, the parents have to pay. Blood tests are all charged for. Travelling to the Center for a consultation takes the family away from their work, therefore they do not earn, and it costs money for transport and accommodation in the city. When the average monthly income for a rural family is about $US30, these costs create great hardship. Not surprisingly, parents sometimes resort to rationing the medications, giving it every other day or even less often. Patients perish from adrenal crises at the rate of several per year. Laboratory testing is behind the times and has not changed in the 9 years I have been visiting. There is no 17-hydroxyproigesterone assay in Hanoi, even though it is available in Ho Chi Minh City.

Many girls are seen with advanced virilization which can be seen in their overall appearance and on closer examination of the genitalia. Some have gross enlargement of the clitoris. As part of the service to those who attended the meeting of the CAH Club, my colleague Dr Sonia Grover examined over 40 girls with CAH in one afternoon. Many had had very good surgery but this was not universal by any means. Some had urinary incontinence. Vaginal dilatation seems to be almost unknown.

With money donated by CAH groups from Australia, the United States and the U.K., supplemented by a donation from RCHI, I was able to prescribe medications through my own hospital pharmacy for all of the patients. Altogether I took 12,840 20 mg tablets of hydrocortisone and 17,000 tablets of Florinef and these were distributed to the families on the day of the meeting. They were overjoyed to receive them.

Our Social Worker, Elizabeth Loughlin, also attended the meeting in Hanoi. There is a very great need for social and emotional support for these very distressed families but mental health services are underdeveloped in Vietnam. Michele Konheiser, together with her husband, her daughter with CAH and her unaffected son, also journeyed to Hanoi for the meeting of the Club and their gesture of support was much appreciated by the Vietnamese families.

Families of children with CAH in Vietnam have urgent needs almost beyond imagination. Those of us in more fortunate circumstances have a duty of care to them and I feel passionate about wanting to make a difference.

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