England cancer drug funding cancellation - Use... - CLL Support

CLL Support

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England cancer drug funding cancellation - Use your democratic freedom to protest. Derogatory posts/replies/content [u]will[/u] be deleted.

AussieNeil profile image
AussieNeilPartnerAdministrator
14 Replies

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

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AussieNeil profile image
AussieNeil
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14 Replies
G1llHa1n profile image
G1llHa1n

Suggest you provide the links to the two petitions here - not everyone will know of them or how to find them.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toG1llHa1n

See healthunlocked.com/cllsuppo...

wroxham-gb profile image
wroxham-gb

Just to make everyone aware. I signed both petitions and within an hour had a request from one asking "could i help with the refugee crisis" .

Best wishes to everyone.

Sue

AussieNeil profile image
AussieNeilPartnerAdministrator in reply towroxham-gb

Do you know which one sent you that follow-up?

wroxham-gb profile image
wroxham-gb in reply toAussieNeil

Not Anna scuh petition. Which is doing well

Regards

Sue

in reply towroxham-gb

Hi Sue

Where do I find the Anna Schuh petition ?

mikedicks profile image
mikedicks in reply to

you.38degrees.org.uk/petiti...

Oleboyredw-uk profile image
Oleboyredw-uk in reply toAussieNeil

Neil, Sue, all,

Just to be clear about this, in supporting a petition on 38degrees you give them your name and postcode. Since I registered my support I have been asked to join two more petitions. These have both been opened by people in my postcode and nothing to do with me other than that. In the email that you get you will find, hidden at the bottom the option to 'unsubscribe'. So, at the end of the day I dont think it is the petition creators doing this (well at least not to me).

rob

Oleboyredw-uk profile image
Oleboyredw-uk in reply towroxham-gb

Sue, one of the things I don't like about the 38degrees petition site is that after registering with one petition they seem to mail you info on others. I dislike this intensely, however, I just consign them to the rubbish. They appear to come from a person, however I'm pretty sure it is just the site drumming up keyclicks.

rob

PE1234 profile image
PE1234 in reply towroxham-gb

This happened to me too .

Oleboyredw-uk profile image
Oleboyredw-uk

There are a number of petitions:

you.38degrees.org.uk/petiti...

Currently 10816 signatures), originally posted here by mikedicks

Three more found here

you.38degrees.org.uk/petiti...

you.38degrees.org.uk/petiti...

you.38degrees.org.uk/petiti...

There may be more.

It is also possible (as wroxham stated) to start a petition though the 'open government scheme' parliament.uk/get-involved/...

(Note: I've changed the web address for this one, as for some reason the original publicised address did not work for me. Hopefully it is the same thing.

If I find any more I'll add them to the list.

Other comments:

Unfortunately, in the UK writing comments on one's ballot paper is no good (as highlighted by Neil for Australia). In the UK any marks on a ballot paper other than the correct number of X in appropriate places is deemed a spoit vote and not included in the counting proces and the comments are not read.

If anyone is considering writing to their MP I found the following on the web: wiki.openrightsgroup.org/wi...

I once wrote to my MP about a personal/company situation and was given some guidance at that time. This web link is easily as good as the previous information I received. I'm still thinking through if and what I will write. Just remember, it is pointless writing to any MP other than your own (I guess that excludes specific ministers), parliamentary protocol dictates they cannot speak on behalf of people who are not their constituents.

<I'm about to be negative, only read this bit if you must: I find it a bit sad that a petition to get a well known self-important presenter in his job gets more votes than any one of these petitions: statement based on rate of signing currently>

rob

wroxham-gb profile image
wroxham-gb

Brilliant response Neil.

Thank you. Sue

Hi Neil

Well put most helpful

mikedicks profile image
mikedicks

After posting a request to support my Haemotologists petition here, I was not surprised to receive strong support. When I posted the same request on Facebook I was similarly unsurprised to receive a mixture of support and vitriol. The anti government vitriol was expected (my friends, like me, are pretty anti this government) but one or two people became very heated about the cost of some of the new drugs, and the problems that these high prices cause for governments running national health services.

It has made me wonder what can be done about these high costs?

I don't believe, unlike many of the people posting on my timeline, that it's all down to reckless profiteering by Pharma companies, although I don't rule it out as a factor. I do understand the high costs and failure rates of new drugs needs to be recovered. But I wonder if there is a way, in the longer term, to reduce the R&D costs through government subsidy perhaps, that would then be recouped in discounted pricing?

It seems that this issue is a complex, economic and political one - like most things there are no black or white answers, but I'd be interested in the groups thoughts on how the problem might be addressed?

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