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Cancer Drugs Fund: CML Support is a signatory to a letter to The Times on November 4th, the day bosutinib is delisted

CDF Issues: Government responds to Cancer Drugs Fund Petition on Blood Cancers

Access to bosutinib for CML patients in England

Letter to The Times, 4th November 2015

Sir,
As an alliance of blood cancer charities, and on behalf of the 27,000 blood cancer patients and their families who have signed a petition against the delisting of life-saving drugs from the cancer drugs fund (CDF), we are concerned over the government's failure on the fund.

The CDF is substantially overspent and no data has been collected on whether or not any CDF-funded treatments have actually worked. The government has let it progress to the point where 12 clinically effective blood cancer drug indications may today be removed without a long-term solution to access.

While the CDF has improved access to cancer drugs not routinely available in NHS England, it was always intended to be a temporary solution while a long-term pricing mechanism was worked out. The proposed consultation on the CDF has taken too long to materialise, and as the new CDF system is set to be in place from April 2016, the time is rapidly decreasing for stakeholders to shape a system that is fit for purpose.

Through the revised CDF and the "accelerated access review", there is a real opportunity to put patients at the heart of the system and ensure that they are able to access the most innovative medicines. This is an opportunity that the government can no longer afford to miss.

ERIC LOW, Myeloma UK;
SOPHIE WINTRICH, MDS UK;
SANDY CRAINE, CML Support;
ROGER BROWN, WMUK;
DAVID INNES, CLL Support Association;
MONICA IZMAJLOWICZ, Leukaemia Care;
JONATHAN PEARCE, Lymphoma Association;
CATHY GILMAN, Bloodwise

Many of you are aware that NHS England has been reviewing some of the drugs that are routinely accessible only by a patient’s clinician making an application to the Cancer Drugs Fund (CDF). We reported this on the Forum in late June. We have heard yesterday that, as of November 4th, bosutinib will no longer remain on the national CDF list of drugs for any patient in accelerated phase (AP) or for any CML patient in chronic phase (CP) who is:

  1. resistant to dasatinib
  2. resistant to nilotinib and
  3. intolerant or resistant to imatinib.

In other words, only patients in chronic phase who are significantly intolerant of nilotinib (grade 3 or 4) and dasatinib (grade 3 or 4) will be able to gain access to bosutinib provided their doctor thinks it an appropriate treatment option and the patient regards it as an acceptable option. Very importantly, this does not affect any patient currently being treated with bosutinib after a successful application to the CDF made by their doctor.

They will continue to be treated with bosutinib until they decide not to continue and/or their doctor recommends otherwise. It is possible for a patient’s doctor to make what is called an Individual Funding Request (an ICDFR as its known) for treatment with bosutinib for a patient that does not meet the criteria. However, this kind of application has a very high failure rate and we regard this situation as deeply unsatisfactory.

The official wording of the criteria published yesterday (September4th) is as follows:

The treatment of chronic phase Chronic Myeloid Leukaemia where there is intolerance of treatment(s) and where all the following criteria are met:
  1. Application made by and first cycle of systemic anti-cancer therapy to be prescribed by a consultant specialist specifically trained and accredited in the use of systemic anti-cancer therapy
  2. Chronic phase Chronic Myeloid Leukaemia
  3. Significant intolerance to dasatinib - Grade 3 or 4 adverse events- (if Dasatinib is to be accessed via its current approved CDF indication)
  4. Significant intolerance to nilotinib - Grade 3 or 4 events

NHS England are holding a meeting with patient groups on Monday to discuss the way decisions like the above were reached. We will report back here about what was said at that meeting later this coming week. A large number of other drug based treatments that are only available via the CDF will also be removed from the list on the 4th November. We will be pressing, via the coalitions of patient organisations we are members of, for collective action to attempt a reversal of these decisions. We will be reporting on this, and activity we have already initiated in August, later next week.

Finally it seems bizarre, illogical and inconsistent to us that instead of advancing the treatment of a disease like CML, NHS England is turning the clock back rather than forwards. The contrast is stark given there are now more drugs available for CML treatment in the other nations of the UK than there are in England.

David Ryner