Hepatitis C sufferers faced 20 year fight for their rights

NO ONE will ever know for sure what the fight for justice cost Brigid McCole. But the additional stress of taking on the State and being refused the dignity of anonymity while battling a terminal illness undoubtedly sapped what little energy remained to her in her final months.

Energy is something on which women with hepatitis C place a high premium. It was the absence off energy that alerted many of them to a condition which medical doctors were unable or unwilling to diagnose for nearly 20 years.

Their stories were unnervingly similar: tiredness constant and debilitating, a feeling of not being "right" since the birth of a particular baby, depression, nausea, joint pains. Doctors concluded it was all in the mind"

Relationships with spouses and children were tested to breaking point. Many of the women sought psychiatric treatment to try and make some sense of a world they could see only through exhausted, irritated eyes.

Ironically, these women greeted the news of contaminated anti D blood stocks with relief. At least the world made sense again. The tiredness was not the result of normal family stresses or children or the menopause or unusually long lasting post natal depression. They were not babbling hysterics with "woman problems".

They were ill and their illness, finally, had a name. It was called hepatitis C, and though its genesis is still wreathed in question marks, the courage of Brigid McCole in pursuing her case through the courts cast significant light - "more significant than the expert group's report", according to one observer - on what really occurred behind the scenes of the BTSB nearly 20 years ago.

Today some 40 women of the 1,600 who tested positive for the antibodies or the virus are severely affected. Many more are in the mild to moderate category. Brigid McCole's death, says one observer, has "been terribly hard on people who feel they are going down a very uncertain road", for the diagnosis they welcomed with such relief a few years ago has led to no safe haven of medical knowledge.

On the contrary, because this is a unique cohort of women who were previously in perfect health with no complications, doctors have been learning from them. In fact, according to one doctor, "these anti D women will rewrite the history of hepatitis C".

Whereas before diagnosis, being "tired all the time" was simply a condition considered natural for a mother of several fively children now chronic fatigue is seen to be a symptom of hepatitis C. Similarly, eye problems (dry eyes), joint pains and other conditions which suggest a depression of the immune system are all now considered to rank among the general symptoms of hepatitis C.

The fact that they are re writing history is little consolation for the women. They have encountered cold bureaucracy - "AntiD recipients queue here: read the sign which "welcomed" the courageous women who took up the original invitation to be screened at Pelican House. The form they were asked to fill in asked about ear piercing, tattoos or accidents involving needles questions many of them found deeply objectionable.

"It just dawned on me then - who can I trust?" said one of the women. "The very people who caused this and were supposed to be here to help me seemed to be trying to protect themselves from me".

While giving her blood sample, this woman was repeatedly assured that there was nothing to worry about. "So I said: `In that case, can I donate blood?' whereupon the previously assured assistant went away and returned with a doctor who said that she "wouldn't advise it".

"Uncertainty" is a word that crops up repeatedly in conversations with these women; uncertainty about the diagnosis, uncertainty about the prognosis, uncertainty about their employment status, uncertainty about their relationships with their children and husbands. Could they treat a cut on a child's knee without risk to the child? Could they infect their husbands through sexual intercourse?

They learned to lock their toothbrushes away, never to carve the meat themselves, never to treat the child's graze. As for more intimate matters, the BTSB's contribution was to tell the group that "it is for the individual to choose whether they wish to adopt (safe) practices or not..." The women have since learned, however, that intercourse should be avoided at the onset of and during menstruation.

Meanwhile, a woman who made a dental appointment for a filling was transferred to a dentist who, she said, met her at his surgery wearing boots, a long gown, a mask and a cap.

But most shameful of all was the sense that even in their emotional and physical distress their contact with fellow sufferers was being deliberately impeded in the early stages, at a time when desperately worried women were being forced to assess their life expectancy and what kind of life that would be.

The board twice refused to circulate a letter from Positive Action to affected women, according to the group. In fact, it was all of a year before the board wrote individually to women identified under the screening programme.

For basic information, the group was obliged to bring an English based expert to Dublin two years ago to learn the full and frightening facts about hepatitis C. But there is still no one who can answer questions such as: why, if two women received dosages from the same batch of anti D, one is dead and the other virtually symptom free.

For some women, a sort of desperate unravelling continues. Where some doctors have underplayed the prognosis for whatever reason, their patients have been discovering the true situation in recent months through access to medical reports prepared for the tribunal.

In this way, some have learned that the outlook is worse than they suspected. The group knows from trends elsewhere that the disease can progress in 20 year time blocks. As most of the women received the contaminated anti D in 1977, there is little surprise that the effects are becoming so marked now.

The reaction to these women is warmer now, the treatment fairer. The conveyor belt syndrome for biopsis no longer applies. But there is still no sign of the consultative council promised by the Minister for Health, which was to be part of a monitoring body.

The women of Positive Action have had to battle for every inch of ground gained. The only certainty among them now is that Brigid McCole will not be the only one to die before her time.