A
sad state of affairs for UK patients
By Rose Woodward
For a kidney cancer patient in the UK with metastatic disease, the
prognosis is very poor and treatment choices are pitiful. The standard first line treatment in the UK is still Interferon Alpha; a highly toxic
immunotherapy drug with a poor response rate. Despite the fact that three new drugs, Sutent, Nexavar and Avastin, have all been approved and licensed
by the European Medicines Agency (equivalent to the American FDA) none of these drugs are routinely funded here in the UK.
UK patients only rarely get offered HD IL2. If your consultant wants
to prescribe one of the new therapies, then you are in for a long, emotionally exhausting and usually unsuccessful battle with the National Health
Sservice (NHS). None of the recent kidney cancer drug advances have been approved by the Government Quango NICE (National Institute for
Clinical Excellence). The only way that a patient can get Sutent or Nexavar is via an individual funding application to their Local Health Authority
(Primary Care Trust).
This application must come from the consultant and must prove that a
particular patient has “exceptional needs”, distinguishing them by their clinical condition and circumstances, from the majority of
other mRCC patients. Once proven, a patient has to show they have a unique capacity to benefit from the treatment compared to other mRCC
patients. The decision making panel, whom the patient is not allowed to meet, will decide whether they are convinced that patient, referred to
by a number only, is indeed exceptional. If deemed exceptional, it is up to the patient to provide cost and clinical efficacy evidence. An arbitrary
figure of thirty thousand pounds worth of treatment per annum is currently the absolute maximum allowed, while many local health authorities work to
a lesser figure.
If drug funding is refused, a patient may try to appeal the
decision. To do this, the patient would need to know what information was used to decide their case, but that information has to be
requested under the Freedom of Information - Act of Parliament. The patient must then familiarize themselves with the policy used to govern the
process. This policy is different in each of the 152 Primary Care Trusts that operate in England alone.
I started a grass-roots patient support group to help patients fight for
the drugs they should have by right. We have kidney cancer patients in our group who have been forced to cash in their pensions, forced to
re-mortgage and even sell their homes to raise the money for their treatment, others try to organize fundraising events, and many more are borrowing
money from family and friends. Some patients are using up their life savings, leaving spouses and families potentially
penniless.
Add into this nightmare situation, the fact that this is happening at a
time in our lives when we patients need a caring, supportive and stress free atmosphere and want nothing more than to spend a peaceful time with
loved ones. It is not the time to fight legal battles against the big wallets of the NHS or be told that your life is just not worth saving.
We pay a percentage of our earnings into a National Health Service that we
are told is “free at the point of need”. Yet, at the point you need it, a group of unelected bureaucrats tell you that
facing death doesn’t make you an exceptional enough case to warrant funding the drugs you need.
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