Living With Mesothelioma -My Diary- 33 Days to go for the Saatchi Bill . London tomorrow to lobby for the Early Access Bill


It has been a lovely Sunny day to day, this is really great no moan about rain again today.

We did our work in the morning and then after Lunch we couldn’t stay in anymore and grabbed Louis and went out to the Park. We were the only ones there so I let him out of the car off lead where he raced around waiting for us to get out. He loves his ball and I love the catcher as I can throw it a long way. Lou races away to find it. Its great to give him so much exercising. The Dog walkers dont seem to be around but they have notices up through the park to keep dogs on leads on the walk as sheep have been hurt and it is lambing time anyway.

 

I put photos on last year where Louis walked through on a lead and he ignored the sheep. He was on a lead I dont know how he would behave of the lead and I  would never try to find out.

We have Louis off lead where it is away from the sheep and in a fenced off area. he ia so amusing chances away with the ball –never brings it back. He sits there until I catch up. He is a pointer. So we spent time in the sun it was so nice and peaceful.

As we went back to the car he came running up with a ball that had been thrown away as it was split. Did he care no I threw it and for the first time in his 7 years he bought it back. We couldnt believe it, but everytime we threw it he bought it back until he jumped in the car with it. We roared with laughter –our little boy has grown up.

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We came back and I carried I even feel asleep for a half an hour until the phone rang and woke me up. I finished the washing and we are straight again.

I did have a lovely email from Brian the lovely young man from Verastem. He is back in UK and wanted to know if he could come to see us. He said he has missed me.  So sweet.

Coverage Highlights:

191 individual news articles have been generated across the UK with a reach in excess of
30.5 million people
– 5 interviews on prime time UK regional news channels – ITV and BBC
– 168 radio interviews including Sky News Radio, BBC Three Counties and Imagine FM
– 4 items of print coverage
– 14 items of online coverage
– Advertorial in the UK national newspaper The Independent

 Radio Day: A radio day was held where Prof. Fennell and Mavis Nye were available, in
studio, for interviews with UK radio stations.
 Audio feature: Prof. Fennell and Mavis Nye recorded an audio feature which was available
to UK radio stations for three weeks following the campaign launch to secure additional
coverage.
 TV Interview: Prof. Fennell, Mavis Nye and Dr Spicer were interviewed by ITN Connect, a
syndication network that creates footage for national and regional UK broadcast outlets
such as ITV News and Channel 4.
 Saatchi Bill: Lord Saatchi’s Medical Innovation Bill, designed to help doctors innovate new
treatments and cures for cancer and other diseases, was presented at a public consultation
in the House of Lords on 24th
February. Prof. Fennell and Mavis Nye were invited to address
the public and decision makers to highlight the need for better/easier access to treatment.
In particular, they argued the urgent need for more treatment options for mesothelioma
patients. The public consultation featured live on Google hangout and is now available on
YouTube. In addition, Leicester University issued a press release to the UK media announcing
that Prof. Fennell was taking part in the consultation.
 Print and online media: Traditional and new media news outlets were made aware of both
the COMMAND study and Prof. Fennell and Mavis Nye’s involvement in the Saatchi Bill. As a
result, Mavis participated in a number of interviews with her local paper, national paper
Sunday Express and regional BBC News station in the days after her address at the House of
Lords.
 Advertorial: An advertorial was placed in the UK national newspaper, The Independent, as
part of their supplement on rare diseases day on the 28th
February.
 Video interview: Prof. Fennell and Mavis Nye were captured on film discussing
mesothelioma, the Saatchi Bill and the COMMAND study (Prof. Fennell only). The final video
will be made available to both Prof Fennell and Mavis, plus distributed to relevant patient
organisations and mesothelioma bloggers.
3. Media coverage and results
In total the UK media outreach activities generated more than 191 opportunities to read or
hear the news.
Four regional ITV stations featured the ITN Connect interview with Prof Fennell, Mavis and
Dr Spicer. In addition, BBC South East Today conducted an interview with Mavis Nye
focusing on mesothelioma and the Saatchi Bill. Stations which aired the ITN Connect
interview included ITV London, ITV Meridian, ITV Anglia East and ITV Meridian South East.

Five radio interviews were conducted. The interviews were syndicated to an additional 134
regional stations. In addition, a total of 29 radio stations aired the audio feature. Highlights
of the radio coverage included Sky News Radio, BBC 3 Counties, UCB and Pure FM.

The total weekly audience reach for the broadcast stations, both radio and TV, combined
was over 30 million people (Note: The figure is the total weekly audience reach available)

18 pieces of print and online coverage have been generated to date. Online and print
coverage highlights include The Herald, Sunday Express, Kent Online (Kentish Gazette) and
ITV News Online. Total reach was over 661,515 people.
(Note: The figure is the total circulation and monthly unique website visitors available)

In addition to the news stories above, the discussion about mesothelioma and Mavis’
dedication to raising awareness of the dangers of asbestos continues. As a result of the
media day a number of other meso bloggers have written about Mavis’ recent media activity
and linked to her blog, each mentioning the COMMAND study and Verastem by name.

I cant believe we reached so many people and Im proud and honoured that I did. He has given me a whole print out but I cant put it all on here I will try to work out how I can do a link.

—————————————————

I wish Lord Saatchi all the luck as the Bill is getting nearer to being passed (Hopefully) 33  days moire so I will help on the final push.

Harrison Trust has done a wonderful Interview today and he has the life of his son to fight for

Please watch this was the Bill today on TV

 8h

One more day to go! Looking forward to patients, campaigners, pharma, MPs & Peers coming together to ensure for those in need! Tomorrow we are all back in the House of Commons as we have been invited by Empower to lobby I will report back with a blog for the day.

http://www.mhra.gov.uk/Howweregulate/Innovation/EarlieraccesstomedicinesschemeEAMS/index.htm

On 14 March 2014 the Early Access to Medicines Scheme was announced.

Under the scheme, Medicines and Healthcare products Regulatory Agency (MHRA), will give a scientific opinion on a new medicine or indication that has demonstrated a positive risk/benefit balance.

The scheme will begin taking applications from companies from early April 2014. MHRA will provide advice on the scheme when it is launched and we look forward to receiving applications from then.

MHRA has previously consulted on proposals for the scheme. Here is the government response to this consultation.

Government response to the Early Access to Medicines Scheme consultation – March 2014PDF file (opens in new window) (74Kb)

The scheme is voluntary and the opinion from MHRA does not replace the normal licensing procedures for medicines.

MHRA is responsible for the scientific aspects of the scheme and the scientific opinion will be provided after a two-step evaluation process:

  • step 1, the promising innovative medicines (PIM) designation
  • step 2, the early access to medicines scientific opinion.

Promising innovative medicines (PIM) designation

The PIM designation will give an indication that a product may be eligible for the Early Access to Medicines Scheme (based on early clinical data). The PIM designation will be issued after an MHRA scientific meeting and could be given several years before the product is licensed.

Companies who want to move to step 2 must hold a PIM designation and provide further relevant data on quality, safety and efficacy.

Early access to medicines scientific opinion

The scientific opinion will describe the benefits and risks of the medicine, based on the information submitted to MHRA by an applicant after sufficient data have been gathered from the patients who will benefit from the medicine. The opinion will support the prescriber and patient to make a decision on whether to use the medicine before its licence is approved

 

 

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