How to Appeal for funding for drugs

[Deanne Jenkyns]

Appealing for funding for drugs on exceptionality Grounds

Introduction

If you are a patient who’s been told by your oncologist that you could benefit from a particular drug, but your PCT won’t give it to you because it’s “too expensive” you can apply – with the help of your GP or Oncologist or both – to your primary care trust (PCT) For “exceptional funding” to pay for it.

A special PCT fund

PCT’s have to maintain a fund for exception cases, outside of their overall budget. In these cases, they cannot take into account whether the cost of the drug affects their overall budget – which is usually in deficit these days – or whether you the patient can afford to pay for the drug yourself.

When you can apply

An application for exceptional funding, which some PCTs call “special funding” or “special circumstances” can be made for drugs that haven’t been recommended – usually on the grounds of cost – by the National Institute for Health and Clinical Excellence (NICE). This currently applies, for example to biological agents such as Tarceva. NICE recommendations are guidance not law, so PCTs do not have to follow them.

An application can also be made in the cases where NICE hasn’t made a recommendation about a drug yet – either positive or negative – or about it’s use in a particular setting (e.g. first line combination with other treatments). In these circumstances, the PCT will have to decide if the drug can or cannot be prescribed.
Applications and appeals

The terms PCT’s use for applications can be confusing. Some applications are considered as just that and if refused they may be followed up by an appeal to an internal PCT panel. However, some PCTs refer to the initial application itself as an appeal, presumably because medical practitioners are told in advance not to apply for funding for patients. As they would be turned down anyway.

To make it even more confusing, some appeals can become fresh applications if new information about a case becomes available. In any event, you have the right to apply with the help of your GP or oncologist or both, and you should do so in writing. If you are too ill to peruse the application/appeal yourself, you can nominate someone to act on your behalf, but you should provide them with written confirmation that you give your permission in order to satisfy the PCT.

The PCTs response

There appears to be no set procedure followed by PCTs in responding to these applications, including in how long they take to reply. While there are some set deadlines, it appears that the PCTs treat each case individually and the more pressing or urgent the matter, the more likely they are to respond quickly.
On average, PCTs tend to respond to an application letter within a week. They then take up to a further two weeks to collect all the material they need and convene a panel of around five people to consider the application. However, that process can take up to six weeks in some more complicated cases and it is, of course, vital to get your medical practitioner’s written recommendation for the treatment in advance.

The PCT panel meeting

The PCT will notify you about the panel meeting and it’s date, with a request for you and your clinicians to provide the information they need – which they will specify – and when they need it by. It is Vital that all the information is produced in time for the meeting, as panels often make decisions on the information they have.

There is no set procedure about who can attend panel meetings. Some PCTs allow the patient to attend either alone or with a “friend”. Some allow the clinicians and where relevant, the lawyers involved to attend. Others do not. Your PCT should set out in writing to you what the procedure is.

The framework for the meeting – in other words what they have to consider – also differs between PCTs, as each PCT has it’s own defined criteria for what should be considered as relevant. These criteria can differ remarkably between PCTs, so if you can. Write to them to find out what they are before you make your application.

The criteria usually involve clinical effectiveness, accessibility and, very importantly, some reference to cost effectiveness. They should also make reference to the application of the human rights act 1998.

To summerise:

• Get your consultant oncologist to write down what they advise as clinically recommended treatment for you and their reasons why you should have it.

• If you have been denied a treatment that your oncologist thinks you should get – e.g. Tarceva - apply in writing to your PCT enclosing your oncologists letter and preferably one from your GP

• Before you write, find out from the PCT what their criteria are and make sure you address them in your letter. If you get the criteria after you make your application, you can write a second letter, as long as they get it before the panel meeting

• Find out if you are allowed to attend the meeting and whom you can take along with you – e.g. a friend, clinician, lawyer. Make sure you provide the PCT with any information they need in time for the meeting.

If your application is refused

If the application is refused , ask the PCT for the full minuets of the meeting, the names of those on the panel and copies of all the information they had before them at their meeting. The freedom of information act helps here and you are entitled to copies of all your medical notes and records in any event.

AcknowledgementThis was very kindly sent to me from Ian Beuamont, Bowel Cancer UK. I spoke to him this am and told him I am campagning for Tarceva and he said I could use this information. It was put together by Barrister, Peter Telford.
Hope this helps you in some way.

[Deanne Jenkyns]

Contacting your MP

• MPs are elected by their constituents to represent them and to help if someone has a genuine issue that they need to resolve - as you have

• Like the media, MPs are becoming more interested cancer issues, such as access to treatments and the screening programme, so they are likely to be interested in your campaign

• If you don’t already know, find out the name of your local MP and their constituency office phone number

• Mps are in their constituency on a Friday – and sometimes on a Monday – which is usually when they meet with their constituents. These meetings are called “surgeries” . Sometimes MPs meet their constituents at the House of Commons in Westminster, London.

• Telephone the constituency office and try to make an appointment to see them in person. Meeting them face to face id the best way for you to explain your campaign and get them to help you. You should be able to take someone with you - a relative or a friend – if you wish to

• The constituency office will probably ask you to write or email them before you meet the MP, so prepare something in advance that you can send them. You can also refer to this summery if/when you meet them

• The summery should include brief details of your cancer pathway, why you need the treatment and why you can’t get it, and aspects of your campaign - - including media activity etc. It should include some dates of key events – e.g. a PCT appeal. Keep the summery brief and to the point.

• MPs get lots of posts and emails, so there may be a delay in getting back to you. If you haven’t heard back in a week, contact them to check if they’ve received your correspondence

• If your MP agrees to help you, there are a number of ways in which they can do so, including by supporting your media activity, raising your case in the House of Commons or writing to your PCT directly. Talk through with them what the options are and what they are prepared to do for you

• Write to your MP after the meeting and thank them for their time and, hopefully, their support for your campaign. In addition to being polite, this is a good opportunity to confirm what they have agreed to do for you

[Deanne Jenkyns]

Contacting Local Media about Your Campaign

• The Media can significantly increase the impact of your campaign, because they can help you reach many more people than you could on your own

• Local and regional media are always interested in news stories about people in there area, so they will almost certainly be interested in your campaign for access to treatments

• Find out, if you don’t already know, who your local newspapers, TV and radio stations are

• Before you contact the media, prepare a short summery of what you re going to tell them; this should include a brief timeline of events relevant to your campaign, including your cancer pathway and your efforts to get a particular treatment

• When you contact the media, ask to speak to the health reporter, or if they haven’t got one the news desk. Explain that you are cancer patient with a news story and they will put you through to someone to speak to

• Journalists are busy people, so what you are going to say keep is brief and to the point; if they are interested, they will ask you for more information, so be ready to be interviewed and answer questions about how you feel about the situation you are in

• They will also ask you about who else is involved in your campaign, so make sure that you have someone’s permission before you name them when talking to a journalist – e.g. your oncologist – as some people would rather support you anonymously or behind the scenes

• It will help if you are actively campaigning in other ways. If so, tell the media what you and others are doing on your behalf – e.g. writing to your PCT, contacting your MP; taking legal action; organizing an awareness raising event – and the key dates. E.g. of your appeal, your event

• Newspapers and TV stations that are interested in your story will want to photograph or film you, ideally with your partner or close family member, as personal news stories are always more powerful if the person is seen with those who care for them

• Consequently, agree with your family in advance who is willing to be photographed and filmed with you

• News doesn’t stand still, so offer to keep journalists updated about future developments/news in your campaign; they might also want to call you, so if you are happy to, give them a contact number they can reach you on
Giving Media Interviews

• We know it can be daunting, but don’t panic about giving interviews; the media are interested in your story and will be sympathetic; they’re not expecting you to be a slick media performer

• However, it always helps to be prepared, so rehearse what you want to say in your interview – basically why you want the treatment your campaigning for and the difference it would make to you and your family

• Ask the journalist in advance if the interview is live or pre-recorded and how long it is going to last; also find out what they are going to ask you

• If the interview is live, it will probably only last a couple of minuets; if it’s pre-recorded, it might take longer , but it will be edited down. Also if it’s pre-recorded you can always ask a question again if you make a mistake

• When you do the interview, imagine you are talking to an interested friend – don’t rush it, try to relax, keep your answers brief and speak clearly and slowly, and you’ll come across well

• Some of the questions you might be asked are: Why do you need this drug; Why won’t the PCT let you have it; how long have you been campaigning; what else are you and others doing to campaign; what happens next and when - -e.g. PCT appeal; awareness raising event

Acknowledgment

This information was very kindly supplied by Ian Beaumont, Bowel Cancer UK

[julia]

TARCEVA APPLICATIONS



Hi

I came across this website when I was contacted recently regarding accessing drugs for lung cancer. Although I am not a lung cancer patient (I am a breast cancer patient), for the last 3 years I have been involved in helping patients to get funding for drugs not yet appraised by NICE. Initially Herceptin for breast cancer and then Sutent/Nexavar for Renal Cancer patients, as I, like Deanne, feel very passionately that the current system of drug rationing is so wrong.

I have recently been in email contact with Deanne after discovering that patients are still trying to access Tarceva, although I understand NICE are due to make a decision imminently, so hopefully the problems will soon be over.

Although these cancers are different, the process of applying is exactly the same.

Patients trying to access Tarceva are finding themselves going through exactly the same plight as the patients trying to get Herceptin and the renal cancer patients trying to get Sutent/Nexavar.

The lengths PCT’s are going to in order to deny patients access to these drugs is quite extraordinary.

Therefore, if the knowledge I have picked up along the way will help anyone still trying to access Tarceva at the moment then drop me a line, it is a dire situation for anybody to face trying to get access to these drugs.



Regards


Julia

[stayingpositive]

I also found this I think from Prof. Sikora:

If your case goes to the PCT Exception Committee and it is declined – challenge the decision and the authority of its members.
Next step if appeal fails:
Complain to the Chief Executive of Hospital (copying the Healthcare Commission)
Complain to local PCT
It is generally accepted that the majority of cancer sufferers who challenge their PCT win.

Make cancer charities aware of your challenge – they can be a mine of information.
Get in touch with Doctors for Reform, Halliwells Solicitors, Pamela Northcott Fund.
Get in touch with the drug manufacturer.
Get as much publicity as possible and do not accept what you are given.

Some links below:
www.pamelanorthcottfund.org.uk/
www.reform.co.uk/DfR/DfRHome/tabid/121/Default.aspx
www.halliwells.co.uk/about/probono.cfm