The whole CLL patient world is the poorer because of the recent reversal of funding arrangements for new (and not so new CLL drugs i.e. Bendamustine) in England*. Unfortunately posting or replying with derogatory remarks about politicians and political parties will not help your cause. These will be edited/deleted at the admins' discretion. Use your energy and your democratic freedoms to put your case to restore access to those drugs where it will be most effective.
We've already learnt of two petitions you can sign and posts on this topic are raising awareness in this community. Other avenues are:
1) Raise awareness in your wider community to influence other voters. They may already know people affected by the cuts and will want the best treatment for themselves, family, friends, community. Petitions are just one way you can do this. See if you can get this topic into the newspapers by writing letters to the editor, getting articles published about how this decision has severe repercussions for cancer patients and so on.
2) Contact your Member of Parliament and tell them how you feel about what's happened and how that will influence your voting
3) Ask candidates and parties standing in by elections and the next general election what they plan to do to improve cancer drug access
4) VOTE - particularly if you don't normally do so
5) Arrange protests as suggested by TheFlyer. That may work best in coordination with a wider cancer support organisation than just CLL, leukaemia, lymphoma or even blood cancer support organisations.
I'm sure that there are many other avenues available to you - further ideas are welcome!
In Australia, you can write comments on your ballot paper, which can be picked up by the scrutineers and fed back to the party they represent, particularly in close election results. That may not be effective in England and might spoil your vote.
* As CLL patients, we need to be aware of the practical realities that the use of tax payer funds is under scrutiny by everyone to hopefully get the best value out of them. "Consider the case of eribulin (Halaven), a drug for treating advanced breast cancer. The UK National Institute for Health and Clinical Excellence (NICE) considered the drug but rejected it as too expensive.
Eribulin was subsequently covered by the UK Cancer Drugs Fund, a pool of public money allocated to pay for drugs not approved via the usual route. The price accepted by the fund was among the highest in Europe for the drug; the price rejected by NICE had been the lowest." (My emphasis)
theconversation.com/if-we-d...
That article is well worth reading, but even if you don't read it, you must recognise that governments can provide the widest public benefit by using established processes like NICE to negotiate the best possible price for these new expensive drugs.
I'm pretty disappointed by what's happened in England, particularly for those that will be personally impacted by that reversal. Those of us living in countries where we can democratically elect our governments can thank the UK for establishing that form of government. Perhaps the UK can again show the way in enabling cancer patients around the world to gain access to new drugs at acceptable prices.
Neil
Ordered my Home PCR Test to access new treatments (Sotrovimab and Molnupiravir)
IBRUTINIB - 12 months on
Ibrutinib denied to new patients
