The next petitions are PE1398, in the name of Alastair Kent, on behalf of Rare Disease UK, on access to therapy for orphan diseases; PE1399, in the name of Allan Muir, on equitable access to therapy for Pompe disease; and PE1401, in the name of Lesley Loeliger, on behalf of PNH Scotland, and Professor Peter Hillmen, on behalf of the PNH Alliance, on access to therapy for paroxysmal nocturnal haemoglobinuria. Members have a note by the clerk and submissions. I invite comments from members.
Official Report · Committee
Current Petitions
Paroxysmal Nocturnal Haemoglobinuria (Access to Therapy) (PE1401)
Speakers
Choose an MSP to read only their contributions- David Stewart Lab 2
- Nanette Milne Con 1
- Sandra White SNP 1
The record
4 contributionsI think that we should keep the petitions open. The issue is complex, as we know, and there have been a number of submissions about it. We should look for more information from the Government, asking for its response to the points and requests that have been made by the petitioners in recent submissions. I would be interested to know how the new system of individual patient treatment requests—what used to be called exceptional prescribing—is going, as I get mixed reports about it. I know that orphan diseases are a slightly different issue, but I think that it ties in with the whole concept of drugs that are not generally available being given to patients.
I agree with Nanette Milne and bow to her expert medical knowledge. I also thank everyone we contacted for getting back to us. The health boards and Healthcare Improvement Scotland have been excellent at getting back to us. We do not always get that level of information and I would like to thank them for it.
I endorse that. Is the committee agreed that we will continue the petitions in line with option 1 in the clerk’s paper and Nanette Milne’s comments?Members indicated agreement.
In this meeting
Everything on 13 Dec 2011 →- 14:00 New Petitions Petitions · 34
- 14:00 New Petitions Petitions · 37
- 14:00 Current Petitions Petitions · 8
- 14:00 Current Petitions Petitions · 12
- 14:00 Current Petitions Petitions · 7
- 14:00 Current Petitions Petitions · 7
- 14:00 Current Petitions Petitions · 6
- 14:00 Current Petitions Petitions · 3
- 14:00 Current Petitions Petitions · 4
- 14:00 Current Petitions Petitions · 3
- 14:00 Current Petitions Petitions · 5
The type of each item (debate, statement, questions, members’ business and so on) and the times shown are worked out by this site from headings, the chair’s opening words and the Official Report’s running timestamps. They are not the Parliament’s own classification. Text: the Scottish Parliament Official Report.