Father of CJD patient hits out at handling of disease

The father of a young man struck down with variant CJD today confirmed he was willing to meet the Health Minister to voice his concerns over the tackling of the horrific disease.

Don Simms, whose 20-year-old son Jonathan is the world’s longest recorded survivor of the human version of mad cow disease, spoke out against Tánaiste and Minister for Health Mary Harney’s handling of the emergence of a new case of the degenerative brain disease.

Ms Harney last week insisted that the national blood supply was safe after it emerged a suspected vCJD carrier was allowed to donate blood.

Mr Simms has blasted the Health Minister as dangerously wrong in saying that all the possible safeguards against the disease were in place and that the blood supply was safe.

“The fact is that no-one knows, there is no definite test,” the west Belfast man said.

Mr Simms, who said he would be happy to take the Health Minister up on her invitation to meet, claimed there was a possible potential test for screening people before giving blood to check if they have the disease.

“That was derived from the animal tests that were carried out among cattle, where it was predicted 10 months in advance of clinical symptoms,” he said.

Mr Simms said if that test was to be used in human cases, experts have speculated the disease could be picked up five years in advance of symptoms.

He said the new test measured heart rate in beats per second, which gives a distinct signature, to examine if the disease was present.

He added: “The fact is it (the test) has not seen the light of day. What they say is there is no validation there as with cattle, but the situation is how can you validate something if you have nothing to compare it to? This thing is unique in that it is non-invasive.”

Mr Simms stressed: “There is no risk in giving blood, you can’t get vCJD from giving blood but you can from receiving it.”

It emerged last week that a young man, who was being treated in a Dublin hospital for a probable case of the fatal human form of mad cow disease, had given blood.

Two people received blood from the man and one has since died from an unrelated condition.

Ms Harney said the man had given blood recently following an appeal for donors by the Irish Blood Transfusion Service (IBTS) but she went on to stress the blood supply was secure.

The Tánaiste said it was always predicted that there would be a number of cases of vCJD in this country.

Mr Simms has been critical of the way the medical profession dealt with his son after they discovered the disease in 2001. “It goes further than that,” Mr Simms said. “I was extremely unhappy that anyone has ever come down with variant CJD. It was preventable."

Mr Simms said experts did not know the total incubation period for the disease and many people may be walking around with the disease. “The fact is the enormity of this may not be realised for many years.”

Mr Simms said his son’s condition has stabilised after two years of experimental treatment for the degenerative brain condition.

“Jonathan was deteriorating rapidly, he was being treated in a palliative way for a terminally ill patient,” he said.

“That has now changed. Now Jonathan is, in the broad sense of the term, being treated in a rehabilitatory way. The other thing is I can confirm to you over he last four months on the brain scans that he gets there is no further brain wasting.

“We would hope that would be continued.”