https://www.nice.org.uk/guidance/gid-ta10281/documents/committee-papers-2<\/a><\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4455", "label" : {"_value" : "Biography information for Seema Kennedy"}
}
, "answeringMemberConstituency" : {"_value" : "South Ribble"}
, "answeringMemberPrinted" : {"_value" : "Seema Kennedy"}
, "dateOfAnswer" : {"_value" : "2019-07-08", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-08T15:43:56.353Z", "_datatype" : "dateTime"}
]}
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, "answeringDeptShortName" : {"_value" : "Health and Social Care"}
, "answeringDeptSortName" : {"_value" : "Health and Social Care"}
, "date" : {"_value" : "2019-07-03", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Spinal Muscular Atrophy: Drugs"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 1 July 2019 to Question 269609 on Spinal Muscular Atrophy, if he will place in the Library a copy of the managed access agreement.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "272723"}
, {"_about" : "http://data.parliament.uk/resources/1136675", "AnsweringBody" : [{"_value" : "Prime Minister"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1136675/answer", "answerText" : {"_value" : "A reply has been sent."}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/8", "label" : {"_value" : "Biography information for Mrs Theresa May"}
}
, "answeringMemberConstituency" : {"_value" : "Maidenhead"}
, "answeringMemberPrinted" : {"_value" : "Mrs Theresa May"}
, "dateOfAnswer" : {"_value" : "2019-07-12", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-12T14:38:51.753Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "23"}
, "answeringDeptShortName" : {"_value" : "Prime Minister"}
, "answeringDeptSortName" : {"_value" : "Prime Minister"}
, "date" : {"_value" : "2019-07-03", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Members: Correspondence"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Prime Minister, pursuant to the Answer on 21 May 2019 to Question 255260, whether she plans to reply to the letter from the hon. Member for Christchurch, dated 18 February 2019 before the Summer recess.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "272724"}
, {"_about" : "http://data.parliament.uk/resources/1136680", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1136680/answer", "answerText" : {"_value" : "The Managed Access Agreement (MAA) for nusinersen for treating spinal muscular atrophy states that the data collection will be in place for a minimum of three years and up to the automatic expiry of the MAA on the fifth anniversary, unless the MAA expires earlier as a result of the publication of the National Institute for Health and Care Excellence\u2019s reappraisal of nusinersen.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4455", "label" : {"_value" : "Biography information for Seema Kennedy"}
}
, "answeringMemberConstituency" : {"_value" : "South Ribble"}
, "answeringMemberPrinted" : {"_value" : "Seema Kennedy"}
, "dateOfAnswer" : {"_value" : "2019-07-08", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-08T15:49:09.58Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health and Social Care"}
, "answeringDeptSortName" : {"_value" : "Health and Social Care"}
, "date" : {"_value" : "2019-07-03", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Spinal Muscular Atrophy: Drugs"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 1 July 2019 to Question 269610 on Spinal Muscular Atrophy: Drugs, what the maximum length of time is for the period of further data collection.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "272725"}
, {"_about" : "http://data.parliament.uk/resources/1136683", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1136683/answer", "answerText" : {"_value" : "
NHS England and NHS Improvement have estimated that circa 630 patients will access nusinersen over a period of five years, which is the maximum period of the Managed Access Agreement.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4455", "label" : {"_value" : "Biography information for Seema Kennedy"}
}
, "answeringMemberConstituency" : {"_value" : "South Ribble"}
, "answeringMemberPrinted" : {"_value" : "Seema Kennedy"}
, "dateOfAnswer" : {"_value" : "2019-07-08", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-08T15:47:32.413Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health and Social Care"}
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, "date" : {"_value" : "2019-07-03", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Spinal Muscular Atrophy: Drugs"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 1 July 2019 to Question 369611 on Spinal Muscular Atrophy: Drugs, what estimate he has made of the number of patients affected by the NICE announcement of 15 May 2019.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "272726"}
, {"_about" : "http://data.parliament.uk/resources/1135041", "AnsweringBody" : [{"_value" : "Ministry of Justice"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1135041/answer", "answerText" : {"_value" : "
We are unable to locate the case without further details. If my Hon. Friend writes to me with details of the case, I will ask my officials to look into the matter.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4106", "label" : {"_value" : "Biography information for Sir Robert Buckland"}
}
, "answeringMemberConstituency" : {"_value" : "South Swindon"}
, "answeringMemberPrinted" : {"_value" : "Robert Buckland"}
, "dateOfAnswer" : {"_value" : "2019-07-01", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-01T16:50:57.863Z", "_datatype" : "dateTime"}
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, "answeringDeptShortName" : {"_value" : "Justice"}
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, "date" : {"_value" : "2019-06-26", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Probate"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Justice, what information he holds on when probate will be granted in the case of Carol Rosalind Green who died on 24 September 2018; and if he will make an assessment of the effect the time taken to grant probate on the ability of the executors to complete the sale of the deceased person's property.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "269608"}
, {"_about" : "http://data.parliament.uk/resources/1135042", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1135042/answer", "answerText" : {"_value" : "
The National Institute for Health and Care Excellence has advised that the total budget impact for the National Health Service at list prices to make nusinersen available for the total population with spinal muscular atrophy has been projected to be £156 million. The actual budget impact is subject to a managed access agreement and a confidential commercial agreement between NHS England and NHS Improvement and the company.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4455", "label" : {"_value" : "Biography information for Seema Kennedy"}
}
, "answeringMemberConstituency" : {"_value" : "South Ribble"}
, "answeringMemberPrinted" : {"_value" : "Seema Kennedy"}
, "dateOfAnswer" : {"_value" : "2019-07-01", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-01T15:49:02.907Z", "_datatype" : "dateTime"}
]}
, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health and Social Care"}
, "answeringDeptSortName" : {"_value" : "Health and Social Care"}
, "date" : {"_value" : "2019-06-26", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Spinal Muscular Atrophy: Drugs"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
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], "questionText" : "To ask the Secretary of State for Health and Social Care, what estimate he has made of the annual cost to the public purse of (a) the decision by NICE in May 2019 to enable people with spinal muscular atrophy to access new drugs and (b) enabling all people with relevant conditions to access those drugs; and if he will make a statement.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "269609"}
, {"_about" : "http://data.parliament.uk/resources/1135043", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1135043/answer", "answerText" : {"_value" : "
NHS England, NHS Improvement, the National Institute for Health and Care Excellence (NICE) and Biogen have worked together extensively to reach an arrangement that allows access to nusinersen for most people with spinal muscular atrophy types 1, 2 and 3 along with pre-symptomatic patients.<\/p>
NICE has advised that because of the difficulties in being confident about the clinical evidence and the cost-effectiveness of nusinersen, it was necessary to agree access criteria for a period of further data collection to try and better understand how nusinersen affects people with spinal muscular atrophy. Therefore a managed access agreement has been reached, which should not only help answer these questions but also address the financial risk and challenges for implementation in the National Health Service.<\/p>
<\/p>
<\/p>
<\/p>
<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4455", "label" : {"_value" : "Biography information for Seema Kennedy"}
}
, "answeringMemberConstituency" : {"_value" : "South Ribble"}
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, "dateOfAnswer" : {"_value" : "2019-07-01", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-01T15:54:43.597Z", "_datatype" : "dateTime"}
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, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health and Social Care"}
, "answeringDeptSortName" : {"_value" : "Health and Social Care"}
, "date" : {"_value" : "2019-06-26", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Spinal Muscular Atrophy: Drugs"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Health and Social Care, how many and what proportion of people with spinal muscular atrophy will be eligible for access to NHS drugs for treatment following the 15 May 2019 announcement by NICE; what his policy is on people who have been excluded from that access; and if he will make a statement.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
, "tablingMemberPrinted" : [{"_value" : "Sir Christopher Chope"}
], "uin" : "269610"}
, {"_about" : "http://data.parliament.uk/resources/1135044", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"}
], "answer" : {"_about" : "http://data.parliament.uk/resources/1135044/answer", "answerText" : {"_value" : "
The National Institute for Health and Care Excellence (NICE) has advised that on 15 May 2019 it confirmed that it was able to recommend nusinersen for the treatment of spinal muscular atrophy. In the announcement, NICE said the treatment would be made available under the terms of the managed access agreement between NHS England and NHS Improvement and Biogen. However, the full detail of the agreement was not given in the announcement and NICE accepts this was misleading for some of the patient population. NICE provided clarification at the earliest opportunity and has apologised to individuals affected.<\/p>"}
, "answeringMember" : {"_about" : "http://data.parliament.uk/members/4455", "label" : {"_value" : "Biography information for Seema Kennedy"}
}
, "answeringMemberConstituency" : {"_value" : "South Ribble"}
, "answeringMemberPrinted" : {"_value" : "Seema Kennedy"}
, "dateOfAnswer" : {"_value" : "2019-07-01", "_datatype" : "dateTime"}
, "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"}
, "questionFirstAnswered" : [{"_value" : "2019-07-01T15:53:48.517Z", "_datatype" : "dateTime"}
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, "answeringDeptId" : {"_value" : "17"}
, "answeringDeptShortName" : {"_value" : "Health and Social Care"}
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, "date" : {"_value" : "2019-06-26", "_datatype" : "dateTime"}
, "hansardHeading" : {"_value" : "Spinal Muscular Atrophy: Drugs"}
, "houseId" : {"_value" : "1"}
, "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"}
}
], "questionText" : "To ask the Secretary of State for Health and Social Care, for what reason the announcement by NICE on 15 May 2019 that it would facilitate access by people with spinal muscular atrophy to a new drug for prescription on the NHS was followed several weeks later by an announcement that the drug would be available only to a specific group of those people; and if he will make a statement.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"}
, "tablingMember" : {"_about" : "http://data.parliament.uk/members/242", "label" : {"_value" : "Biography information for Sir Christopher Chope"}
}
, "tablingMemberConstituency" : {"_value" : "Christchurch"}
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