The meeting that opened Govt's eyes

THEIR eyes were red even before they made themselves comfortable in the office of one of Hongkong's highest ranking officials. When they finally began to tell their stories to the one person they knew could make a difference, they could no longer fight back the tears.

Between them, the two mothers have brought up three haemophiliac children who have been tested positive for the deadly AIDS virus. For seven years, they held back the secret. Now, they had finally won the chance to make a plea for compassion. They were not about to waste it.

For them, it was an emotional high spot: they never thought they would ever have a friend in Lower Albert Road, let alone be there.

As Secretary for Health and Welfare, Mrs Elizabeth Wong Chien Chi-lien has heard many sad stories. But when she emerged from the two-hour encounter, even she admitted: ''This has opened my eyes.'' Mrs Wong had asked to meet the haemophiliac victims of blood transfusions given at Government hospitals, after reading one mother's story in last week's Sunday Morning Post. At her request, we arranged for two of the mothers to see her privately.

The women maintained they were speaking for themselves, although anything they achieved they insisted should also go to all of Hongkong's 61 haemophiliacs and their families caught in a tragic and hopeless situation through no fault of their own.

And they explained that, horrifying as their stories were, there were many far worse.

Some children are already in the final stages of the disease and dying. Some of their parents are feeling suicidal. That was why, they stressed, financial help was desperately needed now.

''There is absolutely no chance my son will live. It is seven years now since he contracted the HIV virus. He will die anytime,'' one said. ''I need the money to give my son more happiness in life. I do not want him to die in sadness.

''It is true money cannot accomplish everything, but nothing can be done when there is no cash.

''I want to quit my job to stay home with my son and that needs money. They are innocent victims. Through no fault of their own they have contracted this disease. Once they have died, it is too late to give us anything.'' The two women talked frankly of how ignorance, shame, and the stigma associated with AIDS had worked to destroy their lives and those of their sons; of the horrifying trauma faced by those afflicted with a disease that had caused more confused emotions than any other; of the great urgency to strip away the mystique causing so much needless suffering.

Mrs Wong first listened in disbelief, then admitted where AIDS was concerned ''Hongkong is still in the 18th century''.

She wiped the tears from one mother's cheeks as her deputy, Mr Victor Ng, assured them they would do their best to help.

Mrs Chu, who spoke to the Sunday Morning Post last week, proudly showed pictures of her son. ''He is such a good looking boy. Now he can only sit at home and wait for his time to come,'' she told the health and welfare chief.

''There is so little care I get from people. They always say on television how they should offer love and care to the AIDS patients. Now my son is sitting at home with no school to go to while you people, who should be helping him, talking to him, are making paper stars.

''Who is standing up for our rights? Who will take him out for a walk while I am working instead of having him locked up at home? Nobody accepts us. . .'' She said that following last week's article: ''I have got much support from people, even some doctors told me we had done the right thing.

''I have discovered I should no longer sit at home and suffer in silence. My son could leave me anytime; it is important I do something for him.

''I used to have nobody to complain to. When my son was kicked out of school, I suffered quietly. For a while I genuinely believed the Education Department could do something for me.

''Then I saw other dying children and I thought I really did not want to wait for that to happen before I did something. If anything can be achieved I want to achieve it now,'' Mrs Chu said.

The meeting was a far cry from the first attempt the other woman, who asked to be called Mrs To, made to publicise her plight in Central three months ago. Then, the 56-year-old mother with seven children was caught in the glare of a television camera, and had to lie about why she was there.

''I was holding a placard representing the Haemophiliacs Association. I was with other people fighting for the rights of patients. But unlike other protesters I was running away from the TV cameras because I could not be identified,'' she told Mrs Wong.

''My friends and neighbours did not know my two sons were haemophiliacs. If they did they would naturally think they were HIV-carriers. Now that they are carriers, of course, I have to make sure nobody knows.

''In Hongkong, we have no choice but to hide. I feel I am worse than a rat. A rat can come out to look for food. I cannot.'' Now Mrs To, accompanied by Sister Maureen McGinley of AIDS Concern and Mrs Chu, has decided not only to tell her story but also to fight for what she and her two sons deserve.

''It is painful,'' she said. ''I am over 50 but I still have to bathe my 26-year-old son, Ah-wing, who is not only an HIV-infected haemophiliac but also blind and crippled. Is there anything more tragic than this?'' Mrs To's other son, 18-year-old Ah-keung, is also HIV-positive. Another haemophiliac son died more than 30 years ago.

''Sometimes I wish they were all dead, but my doctor kept telling me Ah-wing has a strong will to live.'' Of her family's plight she said: ''My daughters are working now, but they never bring home any money. My husband does not have a steady income. I am old. What if I die before my blind and crippled son?'' And Mrs Chu said: ''The Education Department kept me waiting for three years but in the end failed to give me a satisfactory answer after he was expelled from the first school. I do not want the health authorities to do the same thing again.'' Mrs Wong was clearly shocked when told it was not only HIV-positive haemophiliacs who had to hide their identity, but also those who were not infected.

And when Mrs To told of how her son was mistreated in hospital, Mrs Wong signalled for her deputy to take careful notes.

''I could not read or write,'' Mrs To said. ''One time I took my son to the hospital for a regular check-up, only to be screamed at by the nurse, simply because I had the time mixed up.

''And there was no confidentiality for the HIV-infected patients. They would be put in a public ward with warning signs on top of their bed telling people they should be careful with their blood and bodily fluids.

''There was one time when I went to visit Ah-wing. His bed was screened off from the rest of the ward and there was no water in the flask, no water in the cup. When I went to ask the nurse for some water - using a flask I brought with me - the nurse saidat the top of her voice: 'Don't you know your son is a carrier?' ''Of course I do. If you are so scared of him why not give him a special ward? There are so many outrageous things. I do not know where to begin.'' The women believe more resources should be put into educating the public. ''There should be more publicity on TV. There should be commercials which say it is not only all right to have dinner with an HIV-carrier, but to share a hot pot as well,'' Mrs Chusaid.

''There should be more support services. The Government should find a way to make the life of AIDS sufferers and HIV-infected children happier.

''There are some children who have terminal AIDS but still want to be taught by a private tutor. If they are so determined, why can't the Government help them?'' The meeting's end was almost as emotional as the beginning.

Mrs Chu told Mrs Wong: ''Now that I have seen you, I think I have done the right thing.'' And she summed up her feelings on behalf of all the victims when she said: ''I am not asking for millions of dollars. I just want a fair sum, comparable to the UK scheme of settlement, for the patients or more because Hongkong lacks a lot of the benefitsUK people enjoy.'' As for Mrs Wong, she slumped back in her chair, exhausted. ''This is a first hand experience,'' she said. ''Before, I did not know.

''Now I want to talk to more parents. I will also move very quickly because I know in this case speed is of the essence.''