"A Cause for Action: The Time for Change"
Tuesday 9th November 2004, The Congress Centre, London
Peter Cardy, CEO, Macmillan Cancer Relief
Dr Richard Atkins, President & CEO, National Prostate Cancer Collation, USA and Peter Langdon, Director of Strategic Partnerships, National Prostate Cancer Coalition, USA
Vivienne Parry: Now we are coming to the section of the conference about influencing the government and NHS. Which I actually think prostate cancer has been astonishingly successful in doing - mainly through collaboration. We are going to hear from two sides of the waters, as it were. First of all from Peter Cardy of Macmillan Cancer Relief who have consistently topped the poll of MP's for the most effective UK campaigning party, sorry, charity. Sorry, a Freudian slip there wasn't it? So let's first of all hear from Peter Cardy.
Peter Cardy: Thanks very much indeed. This is good timing and bad timing. We began last night the new Macmillan campaign. so we began a new campaign last night . so we are less than 24 hours into our biggest ever campaign which we launched at the House of Commons with a mix of ministers, MP's, peers, major decision makers, and opinion formers and it is about this. It is the better deal campaign [Slide 3]. It is about one of the most widespread but least known and least considered side effects of cancer - debt, poverty and hardship. Many of you will know about that from first hand experience. Genuine side-effects of cancer. Just ask people affected by cancer who have been telling us for a long time that they need something to expose the huge financial problems that cancer brings and raise awareness of help that is currently available.
There are two policy holes in this campaign. First of all to ensure that every cancer patient is offered specialised benefit advice at diagnosis and thereafter, and secondly to change the law to improve cancer patients' access to the two key benefits of the disability living allowance and atten dan ce allowance. These are fairly ambitious objectives, but we believe that they are deliverable and essentially what we are offering the government is tangible wins which go with the grain of public policy - which will bring about measurable change for people affected by cancer which is also part of government policy.
The challenge of course, is to take people with us, especially the politicians. It is an unusual campaign for Macmillan Cancer Relief because it is not all about cancer. It is, however, rooted in our contemporary vision when we envisage that everyone in the country should have equal and ready access to the best information on treatment and care. Interestingly, it is also in the blood of Macmillan Cancer Relief [Slide 7]. These are the covers of two pamphlets that Douglas Macmillan who founded the charity in 1911 wrote in the 1940s to draw attention to what he saw as the scandal of the disparity between services for people with tuberculosis and cancer and the great death toll by cancer in comparison to the death toll during the Second World War [Slide 8]. He left a legacy to the charity, which is now Macmillan Cancer Relief, of these things. His first one was about people being provided with the latest and best advice for avoiding cancer and dealing with it when it exists [Slide 9].
Many of you will know of Macmillan nurses, and doctors at Macmillan Treatment Centres - about the help that we gave to develop the hospices during the 70s, 80s and 90s. But you may not realise that Macmillan is in effect a development organisation. Our business is innovation and improvement that would not have taken place without us. Sometimes that development takes the form of developing new posts that the NHS is never going to get around to. Sometimes of developing new treatment and care or information services. Sometimes of education. So campaigning is part of that array of methods that we use.
As Vivienne said at the outset, we have got something to be proud of because MP's for the last three years have rated us as the most effective charity in campaigning [Slide 11]. Not just in Westminster, but members of the Scottish Parliament also rate us very highly and the members of the Welsh Assembly likewise. So our reputation as a campaigning organisation is spread across the UK. We even have a high reputation with the Northern Ireland Assembly, even though it is not sitting at moment. Even though it is not sitting, there is still stuff that you can do with them.
There is a choice in approaches to how charities campaign. The reason why we campaign is pretty obvious and that is to influence policy and to bring about beneficial changes for our stakeholders - people affected by cancer.
But how do we campaign? There is a choice. The approach that Macmillan has traditionally taken is pretty much not the approach that John Neate and I used to take when we were at the MS Society - of running the biggest demonstrations by disabled people that Parliament had ever seen [Slide 14]. Blocking Whitehall with wheelchairs and publishing offensive advertisements attacking the Prime Minister and the Chancellor of the Exchequer in the broadsheets. We are very much more on the collaborative approach and kill them with kindness - that's what we say [Slide 15]. We are all over them like a rash. This is a kind of giant squid technique that we take.
The way that we have approached it from the mid 90s was trying to maximise the impact that we have on influencing policy and we respond to new opportunities and threats as they arise - but now we are beginning to plan our campaigns. Initially we had this largely collaborative approach through the NHS Cancer Plan. People who were involved in the drafting of it until the moment of printing will tell you of, what I suppose is appropriately called in the context of a cancer conference, a smoked filled room approach. We shifted from that sort of cuddling up to government to a much more supportive scrutiny of the plan. I have to say that I think that it has been very bold of the government to be prepared to publish as many targets to be held to account for. So we see ourselves very much as a critical friend.
But why are we rated as the most effective charity? It's the accumulative effect of three things: direct lobbying at Westminster and in the devolved assemblies; indirect lobbying and contact in the constituencies (and we do a lot of that locally); and parliamentary events.
In reverse order, this is the parliamentary tug of war between the Lords and the Commons [Slide 18]. And the Lords now always lose because they say there are no big rugby-playing sons of the hereditary peers to take part. The parliamentary Palace of Varieties, which is an extraordinary new outlet that takes place at the end of January where MPs and peers vie to take the mickey out of each other [Slide 19]. Out of each other's parties, out of each other's houses and out, indeed, of their own. You can see out on the right there our own Ian Gibson, Chairman of the All Party Cancer Group. I have no idea as to what he is doing there. And of course, in constituencies, the Macmillan Big Hush - here is proof that MPs can shut up for a bit [Slide 20]!
Direct lobbying at Westminster. Well, we had a problem with VAT on Macmillan buildings. We helped to modernise some of the cancer facilities that are available. We tried to build healing environments - to build lovely facilities in which to live with an awful disease. We have now built 130 plus buildings and strangely, because of the quirk of the VAT regulations, we were paying VAT on these buildings that we were giving to the NHS, so it was costing us £1 million per year. So it was common sense to remove that and the result is that the NHS now pays the building costs VAT that previously we were incurring. The strategy in our tactics was to persuade government that it was unfair and to use all of the repertoire at our disposal.
I just mentioned, under tactics, this template press release that takes so much work out of it for constituency MPs to tell their constituents through the local papers of what a good job they are doing. So the result was that we don't pay the VAT on Macmillan buildings any more and the lesson was to be assertive and fairly robust.
"Get it Spent Where it is Meant" was another campaign which was concerned with the Cancer Plan money which many of you remember from a couple of years ago - it was clear that it was not getting through to where it was meant to be. This was identified not only by Macmillan Cancer Relief but also by Cancerbackup and the issue was championed by the All Party Parliamentary Cancer Group and the Science and Technology Select Committee. The aim, quite simply, was to get the money to the front line where it was intended. Similar strategy, bottom up focus on tracking resources, similar tactics as I described before.
The results? - Well the Department of Health Exceptional Tracking Exercise - if Mike Richards is still here he will weep buckets with you and tell you what a nightmare it was to carry that out. Second Exceptional Tracking Exercise can't be that exceptional any more except that we haven't yet seen the results. 106 MPs got involved with the Strategic Health Authorities. Almost 200 signed Early Day Motion 926 and resource tracking of cancer is now on the agenda. So the lesson from that is that MP's are powerful in their own patch.
In the devolved nations, the same lessons hold true but of course the size of the nations - the size of the communities - are so much smaller that it is possible for us to have much more intimate relationships. We have focused on effective contact building. We have national manifestos in each country which have been launched with cross party support. We do the same thing as we do in England to influence service development and funding. And we pack a punch through partnership and campaign coalitions. So what is the verdict on this? Well, I can bring you today, with special arrangement by Number 10 Downing Street, the verdict of a very early Prime Minister [Slide 29]. Thank you very much indeed.
Vivienne Parry: Now let's now go to the other side of the Atlantic to see how they do it there. We've got a very distinguished policy advocate here. Richard Atkins, who is President and CEO of the National Prostate Cancer Coalition. Very distinguished and extraordinary history in advocacy in health policy. He is going to do another double act. This is with his Director of Strategic Partnerships. So let me pass it over to you.
Dr Richard Atkins: Thank you very much. It is great to be here. The clean-up position is just murder. I hope that you will bear with me and participate with me. There are only two things that I want you to remember from my talk. Here is the first one. Would all the men who are prostate cancer survivors - survivors of the disease - men who are related to men who are survivors of the disease, or had the disease, and men who are at risk some time in their life for the disease, please stand up? Now would all women who love any of those men in those categories please stand up. Okay, our point is to salute you. Congratulations and salute yourselves because you are all prostate cancer advocates and you need to remember that before you remember what else you may be when doing the business of prostate cancer advocacy. You may be physicians, you may be researchers, you may be any other kind of professional person, but when we urge you to do prostate cancer advocacy -that's what we hope you are first.
The National Prostate Cancer Coalition takes care of the biggest thing in men's health. Think about it. We are the largest US non-profit that is dedicated to prostate cancer advocacy, awareness and outreach. I am going to be talking about advocacy today. Both Pete and I are going to be talking about advocacy and advocacy outcomes. You can't do good advocacy unless you also do good awareness and outreach.
We, like the Prostate Cancer Charity, were formed in 1996 and we receive our funding totally from private sources [Slide 2]. We get no government funding yet. What did we want to do when we were formed? We wanted to increase prostate cancer research appropriations [Slide 3]. That is where the bulk of prostate cancer research comes from in our country, and you can see that when we were formed, prostate cancer had a disproportionately smaller amount of research funding. Now, we never say to give us the same amount of funding that the other guys have. That would really be self defeating. We say that there is never enough. There really isn't ever enough money for cancer research or research into serious diseases, but you have to be paying attention to disproportionate dollars.
We wanted to also make sure that while dollars increased, we increased accountability of spending on those dollars [Slide 4]. We do that by urging our Congress to keep an eye on those federal agencies that support prostate cancer research. We have been very effective for example, in getting the US Congress to require - and this is the only cancer in which they do it - five-year professional judgement budgets. A business plan. Say what you are going to do. Say what you think you are going to do. Say how much money you are going to spend on it and then we will be able to keep track of it. Well, because the agencies never really spent the money that they were supposed to spend, we have now gone back to Congress and they are requiring the agencies to come back every year and say what they do. That's what you have to do.
We also wanted to increase certain capacities in the area of access to medical care through various reforms of various laws and statutes in the country and we wanted increase availability of good medical care [Slide 5]. Our organisation believes that early detection of prostate cancer is a good thing. We listened to all of the 'ands', 'ifs' and 'buts' today. They are all very good, but we feel that it should be done and we will be happy to tell you why. So that's the bottom line.
So men are couch potatoes and don't like to get up and go to the doctor. There are two possibilities. One of them is that we bring care to the guys. We have the only national mobile medical vehicle which is staffed with physicians and phlebotomists that bring early detection to guys where they live and where they are. And as a consequence, we begin to reduce the disproportionate burden of belief that many men have about early detection.
We also want to impact different constituencies. We impact patients and survivors, we impact family members, folks who have disproportionate burden of disease - Afro-Americans and veterans in the Asian theatre [Slide 6]. We believe screening is a good thing - about 60% plus men have been screened at least once. We know that but only 25% are up to date. That means every year guys..
We do direct lobbying and you can read how we do direct lobbying. This is point two that I want to leave you with today [Slide 7]. Point two, also very simple. In order to be effective with any audience, you have to tell them not what you want to say, but what they want to hear and are willing to hear. It is the only other message that I want to give you and it is called the Gypsy Rose Lee philosophy of public education. Because if you remember the movie or the play Gypsy, when young Gypsy Rose Lee was learning to do her trade she was taught, at least in the fiction, by more experienced strippers. What did they say to her? You have got to have a gimmick if you want to get ahead. So that's the secret of communication in our minds and we have tried a lot of different things. You have got to have a gimmick. You got to tell people, with a gimmick or with a hook, what they are willing to hear. Transform your message into what they will listen to. I am going to give one more example and then I am going to pass this over to Pete.
Every year we go to Congress and we say give us money and here is what we are going to do with it. We don't bring them papers to tell them or leave with them, because paper can go into the round file. We bring them a stuffed animal, it's a dog to which there is an ear tag affixed and the ear tag has the message. I defy any member of Congress to throw away a dog. Why do we give them a dog? Dogs get prostate cancer. They might not be necessarily be willing to be focused at any particular moment in time on the men in their constituencies, but they will not hurt a dog!
Peter Langdon: Rick talks about gimmick. I'm gimmick. The thing that I like to talk about most is developing relationships with corporate partners and cause-related marketing. Today I want to talk about advocacy. But I do want to mention it, because I do love talking about those things so much, I am available afterwards. Because I am also responsible for bringing money to the cause I charge by the hour. So you are forewarned!
First I want to talk to you a little bit about some of the things that we do in order to be effective in our lobbying efforts. As Rick mentioned in the beginning of this conversation, it is important that in order to be efficient in advocacy, we need to raise the bar in awareness and we also need to be effective in our outreach. These are some of the things that we do to impact awareness [Slide 8].
First of all our website. We currently get about 800 page hits a day and that is in competition with national institutes of health and various other cancer organisations in the US. We are currently invested with a company called Conveo doing a website redesign and they do some good work with non-profits.
Next on the slide you will see that we also engage in various conferences and meetings. The one that I want to talk about is our spring training where we bring advocates from key congressional districts and we bring them to DC to educate them, raise their level of awareness and to train them on how to lobby their Members on Capitol Hill. And then we go ahead and set up, schedule appointments for them to do that lobbying.
Email recruiting. The other thing that we have been effective in doing is making things easy for men - making it accessible. What we have done through our newsletter - we have web enabled the ability to send letters to their Congressman and Senators. I also want to point out here too that this targeted emailing campaign has also been effective in recruiting patients for clinical trials for many of our pharmaceutical partners. This is probably one of the areas in which we are extremely effective is in our media outreach. In 2001, we claimed 25 million media impressions and that goes for radio, TV, newspapers, magazines, etc. And that is anywhere that mentions the National Prostate Cancer Coalition. Well this year we are on target to hit 2 billion media impressions. Not only is that extremely important for awareness but also very important to developing our brand equity. Brand equity, branding, brand identity - these things are extremely important to us as we leverage our ability to involve ourselves with corporations for cause related marketing.
And lastly our partners. There is an organisation called IEG out of the US in Chicago and we recommend that if you haven't already, take a look at their website. There is some great information about cause related marketing. The website is sponsorship.com. We are also working with them currently. What I found out there, about five months ago, is that cause related marketing in the world is the third largest marketing expenditure and that is only behind sports marketing and travel and entertainment marketing. It just so happens that sports marketing in combination with cause related marketing with prostate cancer is a very, very effective combination.
Another thing that I think is important to mention about the National Prostate Cancer Coalition in the US is that all of our corporate partnerships have been inbound opportunities. Even the largest of our partners are organisations who came to us realising that we are in touch with their constituencies that overlapped with their target audience. Even a company like Gillette was an inbound opportunity. We are now reorganising in the N PCC so that we are more effective in targeting outbound opportunities.
In terms of our outreach strategies, the drive against prostate cancer is really our signature programme [Slide 9]. The drive against prostate cancer, as Rick alluded to before, is a 40 foot, air stream recreational vehicle. It really is the perfect US model in targeting men at risk with prostate cancer. It is one of the biggest RVs on the road and it is painted purple. I don't know why that is or why I even mentioned it! But it is and it raises quite a bit of awareness in addition to offering outreach to underserved communities. It is a very effective media tool for us and for the partners, whether it is the pharmaceutical companies or other corporate sponsors, to generate local and national media coverage. Obviously we do all of these things with an honourable goal in mind. One of the things we found a little disturbing but consistent is that when we do screenings, whether they are in underserved communities or whether they are at corporate headquarters for company employees, we usually find that upwards of 7% will test positive and then we will recommend that they follow up directly with their doctor.
We have served over 40,000 men. All of this is free of charge to the individual men who get screened. The vehicle is staffed with doctors and phlebotomists who work locally and have their own personal motivations - typically, to recruit new patients and work with us in that regard. We will have hit the mark by the end of this year of 10,000 men in a single year and that is an impressive goal. We are also looking to expand this programme to include another three vehicles in addition to the one that we already have during the year 2005.
The other thing that we are looking at doing - and I have heard some of this at the other seminars that I have attended today - is that we are looking at providing other types of male-related health education and testing or screening at the location where the vehicle is and it travels all across the country. And that is, of course, to encourage better turnout.
The last thing that I will talk about is our newsletter, 'Aware.' This is a particularly important piece that we do. It is a weekly newsletter that covers all of the news in the prostate cancer world about new drugs that are being tested, new treatments, the screening controversy. We have 40,000 subscribers. And we also have - this is very important - we have done a good job thus far at capturing the marketing data about our target audience in 'Aware' and that then means that we are able to represent to corporate partners who our constituency is. This is especially important with prostate cancer, in my belief, because in terms of marketing to men that are not terribly proactive about pursuing their own health, it is important that we then provide that information in more of a top-down approach.
And so we are able to say, among other things, that 60% of the men who receive 'Aware' are prostate cancer patients and we are even able to break it down further into income categories, I mean, it really gets into a basic marketing game. Our goal by the end of 2005 is to have 150,000 in our database and over the last three years we're up from I believe 3,000, so there's a great growth pattern there.
I believe there is one more slide. Yes, more money. This is what we have done between 1996 to 2004 in terms of increasing our advocacy dollars [Slide 10]. There is a five time increase, in addition to our ability to have made significant increases in federal funding for research dollars. Also, as the American government gets involved in re-shifting its financial priorities - controversial or otherwise, abroad - we are sometimes given the task of saving research dollars, which we recently did very effectively this year. Thank you very much.