Under-65s with rare conditions 'forgotten about' in Covid vaccine rollout  

Hundreds of thousands of people living with a rare disease or condition need clarity on whether they can or cannot get the vaccine, says Rare Diseases Ireland.

Hundreds of thousands of people living with a rare disease or condition have been forgotten about in the Covid-19 vaccine rollout and need clarity on whether they can or cannot get the vaccine.

That’s according to Rare Diseases Ireland (RDI), which represents 300,000 people living with a rare disease or condition in Ireland.

RDI chief executive Vicky McGrath said some patients should be prioritised for vaccination while others may not be able to get the vaccine because of contraindications with other medications.

With more than 6,000 rare conditions, an analysis is needed on who can receive the vaccine or not, she said, adding that patients must be given a voice on how the vaccination programme is rolled out.

“There is almost zero communication with patients or patient groups and there is no sign that anyone is giving any consideration to this,” she told the Irish Examiner.

“They need to walk through the rare conditions and say these ones need to be prioritised higher, these ones can’t receive the vaccine, and these ones can get the vaccine along with the general community,” she said.

“None of that work is happening that we know of,” she added.

The Minister for Health and the Government, Ms McGrath said, must demonstrate that people living with rare conditions "haven’t been forgotten about”.

“They have specifically called out people with rare conditions in the programme for government and yet there is no communication,” Ms McGrath said. 

The voice of people in the rare disease community is being forgotten; they are not listening to what we need.

The group is one of 16 patient groups calling for medically vulnerable or at-risk people under the age of 65 to be given greater priority for the Covid-19 vaccine.

In a submission to the Joint Oireachtas Committee on Disability Matters, the Irish Platform for Patient Organisations, Science and Industry (IPPOSSI) said the Government must review its age-based approach to the national vaccination programme.

The majority of people who were dying from Covid-19 had an underlying condition and two-thirds of Covid cases confirmed among people with an underlying condition were aged under 65, the group said.

People with a disability or chronic or rare condition were “confused, disappointed and exhausted” and should be given greater priority than currently outlined in the national programme, IPPOSSI said.

“Many people under 65 live with these conditions, yet they are only seventh in line for vaccination according to the government’s national immunisation plan,” the joint submission stated.

“The Government must work with patient organisations and healthcare professionals to devise a process which is equitable and evidence-based,” it added.