In response to the recent bowel cancer cases that have been in the media, the Secretary of State has asked Mike Richards (my counterpart for cancer services), to lead a review of the consequences of additional private drugs for NHS care. Mike is an obvious choice to lead that review – not only because of his track record and credibility but also as most of the attention to date has been given to the new expensive cancer drugs that have become available over the past few years.
As part of the review I have been asked what drugs for people needing kidney care are being bought privately or might be in the future if the rules on “top up payments” are changed. I have asked the National Kidney Federation, professional societies and the Association of Renal Industries that represent the companies whose products are used in kidney care to comment and if they know of examples where top ups are occurring to supply evidence to feed into the review.
The terms of the review are clear – to examine the current policy relating to patients who choose to pay privately for drugs that are not funded on the NHS, to make recommendations on whether and how policy or guidance could be clarified or improved and in making recommendations to take into account the importance of enabling patients to have choice and personal control over their healthcare and the need to uphold the founding principle of the NHS that treatment is based on clinical need, not ability to pay. The terms of reference are confined to the purchase of drugs not wider services such as physiotherapy or for instance transport for dialysis. Mike Richards however does recognise that other issues are likely to arise as the review proceeds and is at pains to point out that the review is not confined to cancer.
My call for evidence has uncovered a few examples where individuals have paid for the drug Cinacalcet that is used to treat secondary hyperparathyroidism in end stage kidney disease. Cinacalcet underwent a technology appraisal by NICE in 2007 and was recommended for the treatment of refractory secondary hyperparathyroidism. Refractory was defined in terms of the PTH level with poor or no response to standard therapy “and in whom surgical para-thyroidectomy is contra-indicated”, in that the risk of surgery are considered to outweigh the benefits. That caveat, or rider, is I suspect being interpreted in different ways in different parts of the country. I have also received other examples of top ups related to installations for home haemodialysis but no report yet of individuals having to fund their own Erythropoiesis stimulating agents, particular immunosuppressive protocols or the newer phosphate binder, all of which are potentially expensive treatments. If you know of instances where patients with kidney disease in England are having to fund treatments privately please do let me know.