Planning to live with a deadly virus

The first detailed database on people with Hepatitis C has been published. David Labanyi reports

The first detailed database on people with Hepatitis C has been published. David Labanyireports

Two days after giving birth in St Finbar's Maternity Hospital in Cork, Eleanor O'Mahony was given anti-D blood products infected with Hepatitis C.

Within days she fell ill and for the following 17 years suffered a series of undiagnosed illnesses before being diagnosed with the disease in February 1994. She was a regular blood donor during all that time.

Now chairwoman of support group Positive Action, she has welcomed the establishment of a database of people infected with the virus by the State.

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"It will allow us to look into the future and plan as we get older and sicker," she says.

Launched earlier this month, the database tracked the health of more than 1,100 people infected with Hepatitis C from contaminated blood products. It was compiled by the national Health Protection Surveillance Centre (HPSC) from patients' medical records.

Ms O'Mahony says tracking the effectiveness of new treatments and identifying side effects and associated conditions would be a key use for the database.

The report contains details from 73 per cent of those living with Hepatitis C from contaminated blood products.

Given that patient confidentiality is assured, Ms O'Mahony hopes many patients who declined to join the database initially will now reconsider. Everyone who was infected is eligible to participate.

The database will be updated by the HPSC which will also produce an annual report.

Results from the database suggests that almost 10 per cent of participants show signs of liver disease and that 37 per cent have received anti-viral treatment.

Ms O'Mahony says she would like to see the use of anti-viral treatments rise closer to 70 per cent over time.

Ms O'Mahony is one of those who has suffered liver damage. She also has rheumatoid arthritis, a heart condition and stomach problems.

She says one of the most traumatic aspects of being diagnosed in 1994 was thinking: "Oh my God, did I pass it on to someone else. I was never told."

While widely seen as beneficial, Maura Long, chairwoman of support group Transfusion Positive, has identified a possible weakness in the database.

"For many people the date of transmission remains unclear. In many cases it depends on what hospital you had the transfusion in. Some have excellent records. In others the records are really not so good or as in the Richmond, have been destroyed by fire."

Mark Murphy, chief executive of the Irish Kidney Association, says the database will "allow the Department to plan for service provision down the line".

Brian O'Mahony chief executive of the Irish Haemophilia Society, says much of the information on the database is not a surprise but "this is the first time we have strong Irish data rather than international norms".

"Hepatitis C is not going to go away, it is a life-long condition and the database makes clear that an increasing number of people are being treated for liver disease. You are looking at having to plan for more liver transplants in the coming years."

Ten of those infected have received liver transplants, according to the database.

Mr O'Mahony takes issue with the database on one point: the fatality rate. "It says the death rate is 6.3 per cent. Of the 221 people co-infected with Hepatitis C and HIV, 91 have died so the fatality rate among that group is 41 per cent.

"Many of those people died before the advent of the database and are not included but perhaps in future they might be and that would give a more realistic slant on things.

"Even if we exclude our members with HIV, the death rate with Hepatitis C is 12 per cent," he says.

The database is one of two significant recent developments for the people infected with contaminated blood - the other being the start of a long-awaited insurance scheme.

Under this scheme people with Hepatitis C or HIV from contaminated blood can apply for life insurance and mortgage protection. They pay a standard premium with the State covering the cost of any loadings attached.

In the event a person is deemed uninsurable by insurance companies, the State will provide cover. The cost of this scheme is put at about €90 million per annum over the next 25 years.

However, Mr O'Mahony is frustrated that very few people have been able to avail of this scheme as yet due to delays caused by "technical queries" around issues such as income limits.

"These are holding up access for almost all entrants and we are quite frustrated that a month after the scheme started, very few eligibility certificates have been issued," he says. "It's a bureaucratic minefield between the Department and the HSE and many of the people don't have the luxury of having many years ahead of them," Mr O'Mahony says.

When asked about the issue, a spokesman said "the HSE is satisfied that no undue delays are taking place in the issuing of certificates or any other aspect of the scheme's administration".

He adds that to date, less than 10 per cent of those thought to be eligible for the Hepatitis C Insurance Scheme have applied.