Prevention of Future Deaths reports · 2017

Maurice Macdonnell

Regulation 28 report to prevent future deaths, reference 2017-0188, written 14 Jun 2017. A coroner writes one of these when an inquest reveals a risk that could cause further deaths unless something changes.

Date of report14 Jun 2017
Reference2017-0188
DeceasedMaurice Macdonnell
CoronerAndrew Harris
Coroner areaLondon Inner (South)
CategoryProduct related deaths
Sourcejudiciary.uk record · original PDF
Responses published1

The report

Text recovered by OCR from a scanned PDF. OCR is imperfect: check anything you rely on against the source PDF. Reproduced verbatim, including the scan's own layout.

REGULATION 28 REPORT TO PREVENT FUTURE DEATHS

THIS REPORT IS BEING SENT TO:

FY Head of Enforcement, MHRA Medicines and Healthcare

Products Regulatory Agency, 151 Buckingham Palace Road, London SW1W
9SZ

CORONER

lam Andrew Hartis, Senior Coroner, London Inner South jurisdiction

CORONER’S LEGAL POWERS

I make this report under paragraph 7, Schedule 5, Coroners and Justice Act 2009
and regulations 28 and 29 of the Coroners (Investigations) Regulations 2013.

INQUEST

On 23rd August 2015, I opened an inquest into the death of Mr Mautice
Macdonnell who died on 16.08.16 in Kings College Hospital;

It was concluded on 24th May 2017. The medical cause of death was:

ta Giant cell and lymphohistiocytic myocarditis and myositis

ib Rare immune related adverse reaction of an immune checkpoint inhibitor in a
clinical trail for treatment of hepatocellular carcinoma.
The conclusion as to the death was: Unintended consequence of consented
pharmaceutical treatment in a drug trial for advanced cancer..

CIRCUMSTANCES OF THE DEATH

Mr Macdonnell was diagnosed with advanced liver cancer in May 2016 and chose
to participate in an international randomized clinical trial (Study CA209-040) of
Nivolumab v the standard relatively ineffective treatment with Sorafenib. 10 days
after the first dose of the trial drug, he developed a ptosis and became progressively
fatigued. At review at 14/7 on 8th August he was administered a second dose of
the drug before a diagnosis of the cause of the ptosis had been made. This was not
a breach of trial protocol (although 2/7 later the pharmaceutical company advised
withholding the drug) and there is insufficient evidence to conclude that the
decision contributed to the death. He did not report muscle pain or
breathlessness. Clinical examination, blood tests and CT scan excluded non drug
causes of ptosis and he went home. Neurological advice suggested an urgent MRI
scan was done. However he became progressively weaker at home, his GP
attending on 15th. He became unsteady and incontinent in the night and arrested
on the way to King's College Hospital the next morning, due to progressive
myositis and myocarditis, without further investigation.

CORONER’S CONCERNS

During the course of the inquest, the evidence revealed a matter giving rise to
concern that in my opinion means that there is still a risk that future deaths will
occur unless action is taken. In the circumstances it is my statutory duty to report
to you.

The MATTER OF CONCERN is as follows. -

The decision to administer the second dose after fatigue and ptosis had developed
was taken by the doctor who was also the investigator in the research study. There
would appear to be a conflict of interest between the benefits of keeping the
patient in the trial in the interests of research and the potential risks to health of
the patient from receiving the second dose, if that decision is taken by the same
doctor.

HEE (icector BMS R&D advised that the research had received UK
Ethics Committee Approval, but this approval was not received as evidence by the
court. He advised in his experience in international drug trials, there was no such
arrangement of different doctors to deal with this conflict of interest, He pointed
out that the severity of reaction was not enough to require stopping the drug,
according to the protocol, but he would want the drug stopped if it was likely the
changes were related to drug administration. He encouraged clinical exploration of
alternative diagnoses. The letter of response to the enquiry made of BMS by the
research nutse advised “hold any further study drug administration”.

After the inquest the R&D director wrote to the coroner explained the extensive
training of investigators and they have access to a medical monitor, who attends a
committee to see if any modifications are required in the trial for safety reasons.
He also informs the court that introducing an independent adjudicator could pose
a tisk of bias and a burden of bureaucracy,

ACTION SHOULD BE TAKEN

The court has not had the benefit of independent opinion as to whether the
arrangements in this or indeed other trials, adequately protects patients when the
conflict of interest identified above arises.

It would seem prima facie to create a potential risk to lives, but the MHRA would
seem to be the appropriate body to make a judgment on this matter.

It is understood that the adverse reaction has already been reported to the MHRA
and that new drug guidance has been issued.

If any action is required the MHRA may choose to communicate that to the
hospital, pharmaceutical company and/or investigator, who are copied into this
report, as they may be in positions to take further actions to prevent future deaths.

H
i

YOUR RESPONSE

You are under a duty to respond to this report within 56 days of the date of this
report, namely by 9 August 2017. I, the coroner, may extend the period.

Your response must contain details of action taken ot proposed to be taken,

setting out the timetable for action. Otherwise you must explain why no action is
proposed.

If you require any further information or assistance about the case, pl act

COPIES and PUBLICATION

I have sent a copy of my report to the following Interested Persons:

At King’s College Hospital:
The Research Ethics Committee

Consultant oncologist)
(study investigator)
PY Bristol Myers Squibb (R&D Director)

Tam also under a duty to send the Chief Coroner a copy of your response.

The Chief Coroner may publish either or both in a complete or redacted ot
summary form. He may send a copy of this report to any person who he believes
may find it useful or of interest. You may make representations to me, the
coroner, at the time of your response, about the release or the publication of your
response by the Chief Coroner.

[DATE] [SIGNED BY CORONER]

[G- 6-17

§
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Responses

1 response published against this report on judiciary.uk. A response is a body's written reply to the coroner's concerns; publication is at the discretion of the Chief Coroner's office, so an absent response does not mean nobody replied.

Response from Mhra (PDF)
Regulating Medicines and Mi

MHRA

151 Buckingham Palace Road

London SW1W 9SZ
United Kingdom

mhra.gov.uk

Dr Andrew Harris
Coroner for Inner South District Greater London th < and of fo the

Southwark Coroner's Court
1 Tennis Street a 1%
Southwark

London SE1 1YD

24t July 2017
Dear Dr Harris,

Coroners and Justice Act 2009 — Regulation 28 Report following the inquest in to the death of Mr
Macdonnell

PFD report touching the death of Maurice Macdonnell

Date of death 16.08.2016 /

Thank you for your letter of 20" June 2017, received on 26" June 2017, enclosing your Report under
Regulation 28 following the inquest into the death of Mr Maurice Macdnnell and the concern raised that
there is still a risk that future deaths will occur unless action is taken.

Notification of the death was reported to MHRA as a fatal suspected unexpected serious adverse reaction
(SUSAR) within statutory timelines i.e. within 7 days of the trial sponsor becoming aware of the event, in
line with Directive 2001/20/EC.

The SUSAR report has been reviewed and the trial sponsor has done due diligence in investigating the
cause of death and the potential risk to other patients being treated with nivolumab. The symptoms shown
by Mr Macdonell prior to his death are in line with the known safety profile for nivolumab and he was
managed in line with the protocol. Other similar events have been noted in the annual safety report
reviewed by MHRA and this new information does not alter the safety profile or require any further action for
participants in nivolumab clinical trials.

With regard to the possible conflict of interest in reporting the death of Mr Macdonnell and the balance
between the risk to the patient from receiving further doses and the benefit from staying in the trial in the
interests of research, MHRA has received an opinion from the Health Research Authority (HRA) as conflict
of interest lies outside the remit of MHRA for clinical trials. The HRA confirmed that it is common practice
for the Principal Investigator in a clinical trial to also be the patient's physician. The duty of care owed by a
physician should always be the primary role, above the interests of the trial, and this is generally accepted
by physicians participating in clinical trials. These aspects are considered by the Ethics Committee at the
time of the initial application of the clinical trial to them, in accordance with the Declaration of Helsinki. We
are not aware any concerns were raised for this trial regarding conflict of interest. The HRA have also
issued guidance for Ethics Committees on managing potential or perceived competing interests in a clinical
trial, and this would have been followed at the time of the initial review and provision of a positive opinion.

Medicines and Healthcare
Products Regulatory Agency

Bee

Regulating Medicines and Medicaf Devices

The conflict of interest concern for Mr Macdonnell was also reviewed by an Expert Good Clinical Practice
Inspector who raised no concerns from the perspective of MHRA inspectorate.

MHRA does not consider that any further action is warranted at this time given that the fatal event is not
considered a new safety signal and ail appropriate mitigation steps are considered to be in place for
nivolumab clinical trials. MHRA will continue to monitor all fatal events in the UK for patients participating in

clinical triais and who are being treated with nivolumab. Conflict of interest will continue to be reviewed by
the Ethics Committee for all clinical trials in tine with the HRA guidance.

Yours sincerely

Senior Medical Assessor / Deputy Unit Manager CTU

020 3080 6859

Medicines and Healthcare
Products Regulatory Agency
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