Spin doctors mistreat hepatitis C sufferers

Twenty years on, the women at the centre of the hepatitis C scandal are still being treated poorly by the State that poisoned them, writes Special Correspondent Michael Clifford

HOW much should one group be forced to suffer at the hands of the State? Last week we were given a glimpse of how a state agency can callously target a highly vulnerable group in order to protect itself from scrutiny. What has emerged is an example of spin over substance .

Just over a week ago, a story broke about the failure of the Government to provide a vital drug to sick people. Hundreds of citizens who suffer from the blood disease hepatitis C are in danger of contracting irreversible liver damage or even dying. The anti-viral drug that could save them, Sovaldi, has been shown to be highly effective.

As with all new drugs a cost/benefit analysis must be undertaken to determine whether the health budget can afford it. However, because it is regarded as a major breakthrough, an early access programme was initiated in other countries to make it immediately available to those most in need. No such programme exists in this country.

This was referred to in the Dáil on September 23 by Fianna Fáil TD Robert Troy. He mentioned a constituent of his, a Mrs Kennedy, who was among the 1,000 new mothers infected with hep C by the State through contaminated anti D blood products between 1970 and 1994.

“Mrs Kennedy is now dying from cirrhosis, as are around 200 other patients,” Mr Troy told the Dáil. “The family examined the possibility of purchasing the new drug privately abroad, but to no avail. The cost of purchasing the drug here is close to €50,000.

“A consultant from St Vincent’s University Hospital has told me that the drug Sovaldi offers my constituent and many other patients a 90% chance of survival. It has been approved in almost all other European countries but Ireland is lagging behind.”

Minister for state Kathleen Lynch read out a reply that provided no concrete reason as to why women should not be fast-tracked onto this new treatment.

Then, eight days ago, the Sunday Business Post published a story about the failure to provide this treatment to the infected women. By Tuesday, Leo Varadkar, the health minister, said the treatment would be provided “in a matter of weeks” to those most in need, once pricing arrangements could be made with the manufacturers.

“People talk a lot about miracle drugs and miracle medicines. I think in this case there is some truth to it,” he said.

The announcement raised questions as to why this fast tracking had not been done already. After all, most of these sufferers were among the women poisoned by the State.

These women also endured decades of hell prior to the discovery of hepatitis C in 1989. Many were constantly ill, but could not find out what was wrong with them. Their physical ailments were exacerbated by the psychological stress of suffering from the unknown. Then, when it all became clear, the Government initially refused to recognise the State’s culpability. The earlier disasters were covered up. Sufferers were forced to sue the State individually.

In the case of Brigid McCole, she was threatened with financial ruin all the way to her death bed. She settled with the State shortly before her life ended in 1995, in order to make some small provision for her family when she was gone.

The minister for health at the time, Michael Noonan, was accused of hiding behind legal advice rather than doing right by wronged citizens.

Now, 20 years later, questions arise as to why, at this stage of their lives, some of these women were not being provided with the best possible treatment. Apart from all that, Varadkar’s announcement will put further financial pressure on the HSE.

And what happens? Somebody in the HSE decided to spin against these grievously wronged women. Just 24 hours after Varadkar’s announcement, a report detailing the spending of funds in Positive Action, the support group set up for the infected women in 1994, was leaked. In the last two years, serious issues arose over how monies were put to use in Positive Action. At a time when other voluntary and charity organisations funded by the HSE were under the cosh for extravagant spending, the spotlight was turned on Positive Action.

An examination of the books uncovered serious discrepencies that resulted in a Garda investigation. charges are expected against one individual. Positive Action was put into liquidation earlier this year, leaving its then 730 ageing members, many of whom are ill, without any proper support group.

Apart from the alleged fraud inquiry, questions were raised about how up to €2.3m in funding between 2009 and 2013 was used. This is the meat of the report leaked to RTÉ last Wednesday.

On the face of it, the spending looks extravagant and highly indulgent. Over €100,000 on conferences, and the same amount on therapies, including angel card readings, crystal readings, spiritual healing and beauty treatments; supermarket bills of €19,450 and taxi costs of more than €33,000.

Under normal circumstances, such spending would appear to be damning. These were not normal circumstances. This was an organisation dealing with some extremely sick women who had been first poisoned by the State, and then had their plight subjected to a cover-up.

Former director Christine Bruton told Sean O’Rourke that the HSE was fully aware of what the money was spent on, although the HSE denies this.

“The HSE were very aware of these therapies. Medically, there is nothing for these women. Most of our women find them very helpful,” she said.

“The angel card readings, they got solace from this. Some of our members think they’re on the way out.”

She said conferences were attended because the women wanted to inform themselves of possible treatments.

At the outset of their ordeal, doctors had dismissed hep C as a serious condition. Could anybody blame these women for wanting to inform themselves? Could anybody really deny them minor extravagances that might provide solace from the horror inflicted on them and their families, the stolen years, the prospect of an early death?

What has gone unremarked is the timing of the leak of the report. Just when the HSE was about to come under the spotlight for the failure to make available a life-saving treatment, news broke about the failure to make available a life-saving treatment, focus was shifted to the relatively inconsequential, but headline grabbing issue of unusual spending.

The women were used as pawns in the kind of spin which the HSE specialises in. Even at this late stage, as the survivors grapple with the loss of their support group, the increasing challenges of declining health, and frustration about foot dragging on life-saving drugs, they are once again subjected to appalling treatment.