Niraparib and NICE update

[Elizabethe]

Hello everyone, hope you are doing OK today.

You may have seen my previous post about Niraparib (if not you can look it up on my profile). Basically I am on Niraparib which is a PARP inhibitor. I get it prescribed through the expanded access programme which was available briefly in the summer. In March, NICE decided that this drug was too expensive to prescribe on the NHS using a formula called QALY (Quality of life years). This doesn’t affect me but I was shocked by the rationale behind the decision and I posted my thoughts about that on here. Following on from your responses I wrote to everyone I could think of (my MP, NICE, NHS England, etc etc) making the point that quality of life is just as important as quantity.

I had responses from everyone I wrote to but I’m copying and pasting the reply from the department for health and social care as it clarifies where NICE are up to with Niraparib and also gives links and contact information – in case anyone else would like to make their voice heard on the way this formula affects women with OVCA. I would imagine the same formula would apply to the funding of Avastin which I know others have already raised awareness of.

I believe that Olaparib is also currently under consideration for all women with recurrent cancer (at the moment its just those with a BRCA mutation)

Here’s the email:

Thank you for your correspondence of 19 March to Steve Brine and Professor Dame Sally Davies about niraparib. I have been asked to reply.

I was sorry to read of your ill health and I understand that this must be a very difficult time for you and your family. I appreciate your concerns about access to effective treatment.

The National Institute for Health and Care Excellence (NICE) provides guidance on the prevention and treatment of ill health and the promotion of good health and social care.

NICE’s guidance on niraparib for ovarian cancer is currently in development, and the expected publication date is 6 June. NICE is operationally independent of government, and therefore it is not possible for ministers or the Department to intervene in the development of its guidance. Information about the development of this guidance can be found at nice.org.uk/guidance/indeve....

If you have not already done so, you may wish to raise your concerns about this matter directly with NICE’s Chief Executive, Sir Andrew Dillon, at the following address:

NICE

10 Spring Gardens

London SW1A 2BU

Email: [e-mail]

I am sorry I cannot be more directly helpful.

Yours sincerely,

Tamsin Spargo

Ministerial Correspondence and Public Enquiries

Department of Health and Social Care

With love,

Elizabethe x

[Flamingobeef18]

Thank you for all your efforts. I do indeed remember your past post and of course entirely agree with you. I will email this gentleman .

Many thanks

Juliax

[Tesla_7US]

FYI, your NICE link above does not work. The page is missing.

[Orsolini]

The link works for me, super interesting post thank you - Nicola

[ScardyCat40]

I love how they always pass the buck

[ScardyCat40]

I had heard from Target that Niraparib was going to be made available through the cancer drugs fund. Of course that would only affect patients in England and I have not heard any updates since.

[Seasun36-uk]

Thanks Elizabeth. Linda xx 🌺