Here's where you can get Kildare photographer Pat Tinsley's fundraising calendar

Here is the list of stockists of Pat Tinsley's fundraising calendar:

Newbridge Silverware
Farrell & Nephew Bookstore & Gifts, Newbridge
The Kiosk Flowers & Giftware, Newbridge
Cross SuperValu, Newbridge,
P G Duffy & Sons Service Station, Newbridge
Centra Highfield, Newbridge

Leinster Leader/Kildare Now, office upstairs, WD5 Cherry Place, Tougher's Business Park
€12 for one, 2 for €20
All support appreciated! 

Read Pat's story below:

Having waited for two and a half years since his diagnosis with hATTR Amyloidosis, Kildare photographer Pat Tinsley is gutted to learn that the HSE Corporate Pharmaceutical Unit (CPU) is not now going to include Amyloidosis and the purchasing of Patisiran at next week’s scheduled meeting of the HSE Drugs Group.

 To say Pat and similar patients who live with the degenerative and debilitating illness are gutted, is an understatement. Pat and one of his brothers participated via Zoom with the Rare Disease Technology Review Committee (RDTRC), several weeks ago, a committee chaired by Dr. Jerome Coffey.

 The RDTRC (a group of medical experts) were asked by the CPU to gather information and feed advice/findings including the experience of patients living with the disease.  On Tuesday next (7th Dec), the HSE Drugs Group will hold their last meeting of 2020 when funding and drugs allocation will be discussed for 2021.

“My brother and I were asked to participate in a Zoom call with the rare disease committee,” said Pat. “We had an intensive discussion, and relayed the horrendous quality of life I exist with, from bed to bathroom, some days I sleep up to 21 hours, and when I’m up, I’m dizzy, vomiting – generally weak and miserable.”

Pat has lost over 50 lbs in two years, and fears that by the time Patisiran is approved here, it will be too late for him and others living with the condition.   ALnylam is the company that produces Patisiran, a drug now available in the UK, NI, the US and many European countries. The drug has returned phenomenal results for sufferers of hATTR Amyloidosis in trial programmes.

hATTR amyloidosis (or familial Amyloidosis) is a genetic chronic disease that affects multiple organs and body systems, such as the heart, nervous system, gastrointestinal tract, and kidneys.  As the disease progresses, it causes loss of sensation, limb weakness and pain plus alternating episodes of diarrhoea, constipation, nausea, and vomiting.

“We know that ALnylam  has made several discussions with the HSE in the past two years but the HSE still has not made a decision re the imbursements,  despite knowing that I and circa 30 other people live with this dreadful illness,” said Pat.

“The rare disease committee complied a detailed case of my medical history in recent years including the appalling lack of services, the lack of any continuity for me and other patients. I will die without the drug and now it’s not even on the agenda?

“Please Minister Donnelly, get this back on the agenda! Are none of the hATTR Amyloidosis sufferers in Ireland entitled to any consideration here?”

Minister of State Martin Heydon made enquiries on behalf of Pat to the HSE, and received a lengthy brief outlying the process over the past year, including the CPU’s request for input from hAttr Amyloidosis patients and family. A petition, PATisiran for PAT, with 4,000 signatures was submitted by Senator Fiona O’Loughlin to both the HSE and to Minister for Health, Stephen Donnelly, TD a month ago.

While receipt of the petition was acknowledged, no subsequent communications have been received from either the HSE or the Dept of Health.

“We were really hopeful that at last, Patisiran and the plight of Amyloidosis sufferers was on the agenda and would be given a good hearing next Tuesday. But we’ve heard rumblings now that it is NOT up for discussion at Tuesday’s meeting,” added Pat.

A furious and disappointed Pat asked: “What was the purpose of putting my brother and I through that rigorous interview. I am so ill – as are many others. We are aware that there is €29m in the HSE budget for rare diseases and fear now it won’t be targeted for Patisiran.”

“I’ve survived till now, just hanging in the hope that Patisiran would be approved. If the CPU have taken Patisiran off Tuesday’s agenda, my fear is that there the funds will be allocated by February 2021 and Patisiran won’t have been reviewed for reimbursement.

“Therefore, Patisiran won’t be available for possible review until 2022. I don’t have that time, my health is deteriorating as is my mental well-being,” said the 64 year old.

“I’m terrified the CPU will hold off on approving the purchase of Patisiran until it’s too late for me, and others.

“I feel like a man on death row, with no reprieve from the HSE” he said.

Some of Pat’s most iconic photographs of well-known places in Co. Kildare has been made into a calendar in a bid to raise funds for the much-loved photographer.

For more details check out Pat Tinsley-Calendar on Facebook.