Ian Bowers of Cromford, Derbyshire collapsed in January 2008 with extremely high blood pressure and was diagnosed with “malignant phaeochromocytoma” (a very, very rare endocrine system cancer that has spread).
Ian had surgery to remove a 500g (1lb 1oz) phaeochromocytoma (tumour) in February 2008 . He recovered well from the surgery but the tumour had already spread to his lungs. He has a “shower” of tumours in both lungs that are growing.
Ian has had specialised radiation therapy but it didn’t work for him
and there is very little evidence that chemotherapy is effective on these
types of tumours.
Because Ian’s condition is so rare there is very little published research.
Around 60 people a year in the UK are diagnosed with phaeochromocytoma but
90% of them have benign tumours that have not spread and can be successfully
treated. Ian is among the 10% for which there is very little hope.
After a lot of research Ian discovered a drug called Sutent (Sunitinib) which is used in the UK to treat kidney cancer. There is impressive evidence that Sutent could reduce and potentially eradicate his type of tumours.
Ian’s cancer specialist applied to Derbyshire County Primary Care Trust (PCT) for funding for Sutent. The initial request and an appeal were denied on the grounds there was not enough evidence that Sutent was effective for phaeochromocytomas. However, there never will be enough evidence as it is such a rare disease - but with the help of an organisation called The Pamela Northcott Fund Ian is appealing again.
Thanks to the magnificent support from family, friends and people locally and nationally Ian now has enough money to pay privately for 3 treatments of Sutent. Keep up to date with his progress via the news page…
In the meantime Ian is becoming increasingly ill. Unlike more common cancers Ian’s tumours produce adrenalin and other hormones which cause life threatening symptoms. He is at risk of a heart attack and/or stroke as well as the pain and weakness the lung tumours cause. Ian is having more medical crises more often and is running out of time: he is only 40 years old.
Ian has almost finished his 4th treatment with Sutent and has coped well with the side effects and has had no admissions to hospital this year.
The request for funding for further treatment with Sutent is now being finalised
by Ian’s clinical teams and will be sent to Derbyshire County PCT as
soon as the results from his latest scan and urinalysis are available (after
22nd March 2010).
The request will be considered by the Public Health Directorate solely on
the written information provided by the clinical teams looking after Ian.
If the Public Health Directorate decides Ian’s case does not meet the
PCT’s new criteria for funding exceptional cases, the request will not
go any further and there is no right of review or
appeal.
Should the request be deemed worthy of consideration for funding the clinical team’s expert opinions (i.e. Ian’s consultants) will be taken into account but there is no obligation for the PCT to base their decision on expert medical opinions.
The decision will be made solely on what is written on the application form with regard to clinical and cost effectiveness, affordability and meeting the needs of the community.
Should the PCT deem that the request for funding can proceed under the new policy then written submissions from the patient, family, friends etc. can be presented.
What we need now is individual letters or emails from you stating why the NHS should pay for this expensive cancer drug. Please focus on how the treatment has improved Ian’s health and well being, what you understand from the evidence (research) and please avoid emotive statements.
Email Jane at cromford@googlemail.com
or write to 58 The Hill, Cromford, Matlock DE4 3QU
A copy of the Individual Funding Requests (IFR) Policy can be requested from
the PCT via email: communications@derbyshirecountypct.nhs.uk
or telephone 01246 231255
or contact Jane for a copy via email: cromford@googlemail.com