Crowdfunding is the most common way to pay for advanced cancer treatment.
This module includes:
- What is crowdfunding?
- Why do people want to give you money?
- What are the best ways to use the donations?
- Which crowdfunding platform to use
- How to get more donations
This is the 9th topic in the Make Cancer History course, and this is all about crowdfunding for cancer patients. I’m going to talk about what crowdfunding is, and why it’s so important as a cancer patient to do crowdfunding, even if you’re in a strong financial situation at the moment. I’ll talk about the practicalities of doing crowdfunding, like choosing a crowdfunding platform (although actually that’s very easy, because you should basically use GoFundMe), but I’ll explain why.
I’ll also explain about what you can do to get more donations, and a bit about using donations because I think we always think of crowdfunding as cancer patients, as something that you use for just your treatment. But as cancer patients, we have many cancer-related expenses, as do our families. So don’t think of crowdfunding as just being limited to paying for the treatments.
So, what is crowdfunding and how to start? The most famous crowdfunding platform is Kickstarter, which was primarily for people making physical products to sell, but needing a certain number of orders to be able to make (eg) 2,000 leather belts. For some reason, Kickstarter always has belts, bags and tables etc. There’s also Indiegogo which is very popular for music. It’s a similar thing – people who wanted money to go to a recording studio and do 500 CDs, and didn’t have the cash on hand. Indiegogo is also very popular for filmmakers, e.g. independent filmmakers doing short films and feature films too.
There’s a couple which are far more aimed at fundraising. There is Just Giving, and there’s also GoFundMe. It makes a lot of sense to choose GoFundMe as a platform, because even though it is not very good, the big thing about GoFundMe is that as the donations come in, they are passed directly to you. GoFundMe takes ~ 30 cents per donation, plus 2.9% handling fee. (That changes from time to time). I think they spent over a year not taking any fees at all. Instead they had a little section where the person donating could give a tip to GoFundMe. Presumably that didn’t work out so well, so they’re now back to a fixed fee plus a % as a handling fee.
With things like Kickstarter, you set a target that you’re raising money towards and a deadline, and if you don’t get the target, then you don’t get any money. There is an option to set a target and have it so that you get money even if you don’t reach the target. But in that case, the cut taken by Kickstarter is bigger. That’s basically what crowdfunding is.
Over the past 8-10 years, a lot of people are using crowdfunding for medical treatment, which is very sad in some ways. However it has saved my life. I know that sounds melodramatic but I’m alive six years after my terminal diagnosis, for two reasons. One is that I’ve had cutting edge cancer treatments, particularly adoptive cell immunotherapy, and the other one is that I’m in a position to pay for it, thanks to the very generous donations of something like 1000 people over the past 6 years, most of whom I don’t know, which is incredible and very gratifying.
A really important question with crowdfunding, is why do people give? I think that people want to help out directly. People who know you, are often frustrated not knowing the best way to help out, and they don’t. It’s hard for them to judge when you need to be left alone, and when you need some gentle, non-cancer related conversation, or when you need a ride to the hospital.
Donating to your fundraiser is a very direct and straightforward thing for them to do.
But then many people giving, who are complete strangers and have heard your story, may be a bit disillusioned with giving to big organizations. Sadly in many countries like the UK, Not For Profit is a euphemism mainly for salaries, which is unfortunate, but that’s how it works sadly. I think a lot of people now are skeptical of big organizations, and would much rather give the money to you. There’s a related category of people who want to be involved in the story, and cancer stories are common but very sad, and people want to get involved. People want to help out, people want to make a difference. That’s really why people donate.
The reason I’m explaining that, is because you should bear that in mind, particularly if you feel bad about asking for money, like I do, or you feel embarrassed when people don’t have quite a lot of money like I do. Being British, I’m quite squeamish about money. For some reason, British people are very squeamish about money and also eating. Awful. The French love eating awful but for us Brits, we’re a bit squeamish about that.
So that’s why crowdfunding is so important for cancer patients. A philosopher once said, “If you have enough money to solve a problem, you don’t have a problem” and very distressingly, many cancer-related problems can be solved quite easily with some money. In some cases, quite a lot of money, in many cases not as much money as one might think. Money is the second most powerful thing in the world. The most powerful is ideas, the second most powerful is money, third most powerful is technology and systems and processes, the fourth most powerful is people, and fifth most powerful is time. In the business world, that’s called leverage.
So money is the second most powerful thing after ideas. You need to know about advanced treatments. For example, Victor Hugo said “There’s nothing more powerful than an idea, whose time has come a bit more powerful actually, than an idea that comes at the right time.” So if you hear of a new medical treatment at the right time for you, that can be game changing.
Another big thing about money as a cancer patient, is that money helps us get time. I’m not referring to living longer, although very much that’s in the forefront of this. This is accessing new treatments using crowdfunding. But there’s this concept in cancer called “time toxicity”, and as cancer patients who spend a lot of time to and from hospital, spending time at hospital,l waiting for treatment, having treatment, having consultations – time gets stolen.
For me, by the treatments because of the side effects. You may spend a day at the hospital having chemo drips, tests., other treatments and consultations. Then you get home and the next three days may be wiped out with chemo side effects. Chemotherapy particularly steals your time. Money allows us to get some of that back, because if we spend it on things that get us time, if we spend it on things where we usually produce something time consuming and we spend the money instead.
A trivial example would be ordering delivery food or pre-made food, instead of cooking yourself. That’s a really important reason for crowdfunding – to get that money to buy back some of your time.
Another thing about cancer is that it takes our attention. Attention is, for humans, our second most valuable thing after time. But we’re going to use money to quickly solve issues and stresses is really important. That is why I think crowdfunding is so important, even if you are in a good financial situation at the moment. Crowdfunding, the money, it gets you back some of your life, and hopefully extends a life with advanced treatments.
On the subject of using the money, the obvious thing is for treatments that are not available to you in your public health care system, if you’re in a country that has public health care and also testing as well. Many countries that have public healthcare don’t cover these advanced tests. Liquid biopsy tests for example, where you’re looking at circulating tumor cells, or free DNA. Those tests can be very useful for example, if your tumor markers are not responsive.
In my case, we track 2 tumor markers CEA and Ca 99, and they’re both useless for me. They don’t go up and down with my cancer. Advanced testing, eg circulating tumor cells, is a good way to maybe see what’s happening.
Another reason for advanced testing, is those full genome sequencing ones like MSK Impact, and Foundation 1 Testing, because those can show potential treatments. If you have a certain mutation that is maybe associated with another cancer, then you could potentially benefit from the treatment of the other cancer. A classic example of that would be for colorectal cancer. About 10% of colorectal cancer patients are HER2 positive, which is a mutation associated with breast cancer. So those patients who are HER2 positive might benefit from targeted treatments for HER2 positive breast cancer. So having the genetic test is very good and potentially very useful.
Of course it’s very likely if the test does find actionable mutations, your public health care is not going to pay for that. In the case of the UK, there’s public health care and there’s private health care. Sometimes it makes a lot of sense to pay for private health care, at least for part of your health care. The reason for that is there are a few things. One thing is the UK has what’s called “health rationing”, which means different health areas decide different things to spend the money on. It may be that you’re in an area that doesn’t cover a certain treatment that or test that you want or need. There’s also waiting lists for treatment, but sometimes it takes a while to actually see a consultant (which is the British term for a specialist doctor). One secret of the NHS (the National Health Service in the UK) is that almost all the consultants are working in the private healthcare system as well. So you may be in a situation where you’re told you need to wait 2-3 weeks to see a consultant. You could look up the consultant on Google and find that they’re at your local private hospital one day a week, and you can pay ~ £150-200 to go and see them. That might not make a medical difference, but 3 weeks of waiting is incredibly stressful when you have cancer growing inside you.
So getting quick access is another reason to use crowdfunding.
As cancer patients, we have a lot of treatment-related expenses that are not the treatment themselves. An obvious one is travel to and from hospital, particularly if you’re traveling far for treatment. In the UK you may have to move house at least temporarily, to be in the catchment area of another hospital that has a particularly good treatment. You may have a treatment that requires spending time in a distant city. Crowdfunding allows you to rent an Airbnb instead of being in a guest house, to be much more comfortable and be close to the hospital. So transport-related expenses are a big thing for cancer patients.
Actually in the UK, they typically have to pay for hospital parking. To park at the hospital, you often have to pay. Being able to come back from chemotherapy in a taxi instead of on public transport, is potentially very important, particularly so if I do a molecular targeted therapy called Bevacizumab or Avastin.
When I have it I can’t really see for about 30 -40 minutes, sometimes up to an hour. I can see a bit, but it’s all blurry. I wouldn’t want to be driving home from hospital. So transport-related expenses, fun non-treatment related expenses, things like if you’ve lost your hair from chemo being on it- have a more pleasant wig, expensive skin creams that may be better for dealing with a skin rash than the kind of ones you’re given by a hospital, things to make you comfortable.
For example with chemotherapy, you get nerve damage in your long limbs, inthose peripheral nerves in your arms and legs. Some people find heating pads and heat machines help with that, you can get home. Hyperthermia machines that use infrared. the kind of heating devices people use for bad circulation. You can get electrical stimulation things- there’s a class of machines called TENS (Trans electrical nervous stimulation) that seems to help with nerve damage. So things like that.
Foreign nursing home visits, that kind of thing. Those are all obvious things.
Also with crowdfunding, asking for money for things like subscription services, so you can get fresh food delivered to you with services like Amazon Fresh. Things that you normally buy, having that on subscription is one less thing for you to think about. Cleaning services, that kind of thing, and of course things for your family as well. Often, cancer patients will ask for funds towards a trip. For cancer patients with children, it’s quite common to ask for funds to help with home tutoring, because children suffer a lot when their parents have cancer, especially at exam time. A bit of help with home tutoring to help them get through their exams, e.g. they’re in the UK, the GCSE availables. That kind of thing is an incredibly important time for children to get through those exams, and if mum or dad’s in the hospital all the time, it’s a big thing.
That’s a lot about how to spend money and it’s only fair that if you can see to get the money. Setting up crowdfunding is actually quite straightforward. You need to make a few decisions. The main thing is, are you going to be legally the person doing the fundraising, or is a friend or family member going to be doing it and you’re going to be the beneficiary. That’s very important, depending on the legal situation in your country. If you’re for example in the UK, and you’re on benefits and you’re on social welfare, your benefits can be reduced or even stopped if you have a certain amount of savings. So if money is coming in, it’s a bank account and you’re getting ready to pay for immunotherapy which may be tens of thousands of pounds or dollars or whatever (depending on where you are), legally in your country you may be meant to declare that.
However there are ways, not completely legal ways I’m not advocating. I don’t generally advocate for fraud, but in this case I’m not. There are many legal ways to set up crowdfunding made with a friend doing it, and they’re paying for your medical expenses etc.
So do check the legal situation. Then you need a bank account. It makes sense if possible, to have a bank account that is only used for the crowd funding, just to be legally safe, so that if you do get investigated by the England Inland Revenue Service, at any point you can produce bank statements, and it’s very clear this is the crowdfunding money coming in.
Here’s what I spent that kind of thing on. That’s a decision – are you going to be doing it, or is a friend or family member doing it for you? Obviously you may spend a lot of time in hospital, and it’s just far more practical for a friend to be taking care of it for you. With GoFundMe, which is the platform I recommend, your friend can set up the crowdfunding. You can then be a beneficiary, and it still is direct to your bank account, or you could have it so that it goes to your friend’s bank account and then they pay the expenses. or and Andy lots of used notes in a brown envelope in a pub car park, or however you want to do it.
So that’s a decision. Crowdfunding platform, GoFundMe – there’s a lot wrong with it, I’m not going to go into that. However it’s pretty reliable. The cut they take is currently 30 cents plus 2.9% of the donation. Money goes straight into your bank account. It’s straightforward to set up. You can set it up in 15 minutes. Do make sure you use multi-factor authentication. That’s where you get a code sent to your phone or another device. Multi-factor authentication is far less secure than people have you believe, but it is generally better than not having it.
So make sure you switch on multi-factor authentication, so that it’s harder for someone to get in and change the bank account details to their bank.
The main thing you need to do when you set up crowdfunding, is upload a picture. If you go to my crowdfunding page (matthewdons.org – that is a web address I registered and it forwards to the GoFundMe page, I don’t know off the top of my head what my GoFundMe page is but it’ll be something like gofundme.com – Save Matthew because he’s dying of cancer or something like that). Having a registering website name with namecheap or GoDaddy or dream host or whatever registration system you want to use, that will be probably 10 to 15 $ a year, and you can just have that pointing at the crowdfunding thing.
That’s very useful to better give people a short, easy to type, easy to remember link, that they can do for your crowdfunding. Then you need to choose a picture – I have a picture of me from just after my very big surgery to remove the primary tumor and a whole lot of other cancer. That’s a rather emotive picture I’ve chosen, but a good picture, and they need to write some text. The text is important because people are going to see that when they first go to the page. You want to write as much text as possible. You cannot write too much. With GoFundMe, there’s maybe a 3,000 character limit or something like that. You want to use all those characters, so you want to be as clear as possible, as specific as possible, explain a bit of the background, explain a lot about why crowdfunding is important, what difference does it make, what you’re wanting to spend the money, on how much things cost, what difference does the money make.
I always point out on my crowdfunding, that if people give me a small donation that pays for something like a taxi home from the hospital, that’s massively significant to me. Also I always point out that if people make a small donation, it just keeps the crowdfunding page alive. People see donations coming in, and it causes more donations. That’s really important. The most powerful word in the English language is not “please”, which we’re taught as children, but it’s in fact the word “you” and “yours” and “your”. So it’s really important to use that word, and those related pronouns as much as possible.
Writing things like “you have been affected by cancer” or “I’m sure you can imagine how devastating it was to get this diagnosis out of the blue”, so using the word “you” and “yours” and “your” is really important. The next most powerful word in the English language or the equivalent in whatever your language is, is giving people a reason why or how things help, why can’t you get this if you’re raising money for advanced treatment, why can’t you get that from your public health system. If you’re raising money for one of these ridiculously expensive tests, why is the test significant, how will it help you. Giving those reasons why, are really important. Be as specific as you can. Be as open as you are comfortable with.
I find that difficult, but being open is really important, because it builds trust, makes people find it easier to relate to your situation. I don’t write anything that is begging for sympathy, but I do tell the truth about how I’m present some of the treatments are.
Make sure you tell the whole story, because a lot of the people visiting the page won’t know anything about you and your situation. They may have just happened to see the link posted on social media or someone sent them a link, or they’re searching for something about answer and your page comes out. So make sure you tell the whole story.
The key thing to keep donations coming in, is to do updates. Update with good and bad news. Update about what treatments you’re having now. With GoFundMe, when you post an update, everyone who’s donated in the past, they get an email saying “Matthew has published an update to his crowdfunding”. If you write a text update, it will include that in the email.
I tried to do video updates when I can, so the update just will say “a video message from Matthew”. GoFundMe seems to only work with YouTube, so you have to record your video and upload it to YouTube. That is a very straightforward process. You can record it on your phone. If you’ve got a Gmail account that automatically is a YouTube account. If not, just go to youtube.com and register for an account .
Video updates help a lot, because with video we can get a lot of information across quickly. With the text updates, I try to write concisely. I know that you find it hard to believe, because I’m terrible at speaking concisely, but I do try to write concisely. The secret to that is with editing. You read what you’ve written, and before you click “send”, read it out loud. I’m going to cut out irrelevant information and irrelevant words, so it’s easy to read and very clear. Doing those updates is really important.
Another important way to get more donations is to encourage people to share the link, so people paste it particularly on social media. I personally have found Twitter completely useless in terms of getting donations. I’ve had a lot of people sharing my donation link on Twitter and not even one donation coming through. On the other hand, I found Facebook very powerful. I do not like Facebook. I do not condone Facebook. I’m not a fan of big tech, I’m particularly not a fan of Facebook. However I found it absolutely invaluable for crowdfunding. So encouraging people to share, because then again you can write in an update, “I’m now raising money for this certain type of immunotherapy, here are the details, please donate or share if you can”. Because then you’re giving people a chance to share, if they can’t donate.
Hopefully some people will do both, but sharing the crowdfunding really makes a big difference. As I mentioned before, it’s useful to have a short web name or a specific easy to remember web name pointing at your GoFundMe, and that’s useful if you do any kind of PR, if you get into a newspaper, a local newspaper, and it’s quite easy to get into local radio.
Obviously with local radio, it’s really important to have an easy to remember name, because someone listening to the radio is not going to be able to type “www.gofundme.com save Matthew because he has terminal cancer /whatever the address of my GoFundMe is.”
PR is time consuming, but it’s relatively straightforward, especially local PR and that can bring in donations. It also helps people see that your campaign is alive and going well. For example years ago, I was in a website of a newspaper that I’m not going to name, because of the hall in newspaper utterly appalling British tabloid.
However, they did cover my story. I only got one donation from my story being on the website, but when I then published an update with a link to that story in my Facebook page, then my previous past owners, many of those donated. It gave them a big stimulation to see that I was in the media.
The final way to raise a lot of money is to ask people to fundraise for you on your behalf. My dear friend who already named, well several of my dear friends, are actually raising money for my immunotherapy. You could ask people to do events. A very easy event that raises quite a lot of money is some kind of auction. You might ask local businesses to donate a service or product that’s then auctioned. You may be able to get local or even national celebrities to sign some of those items, so a football shirt signed by a local football player or something like that.
That kind of thing can raise a lot of money and an auction is quite easy to do.
If you’re going to do a raffle or any kind of prize draw, please check the legal situation, because in most countries, there’s some legal entity that oversees that. In the UK for example, it’s the Gaming Commsion I think they’re called. So please do check out the legal situation. But those kind of things- prize draw, raffle, auctions. Auctions are the ultimate in terms of least effort for maximum payoff. A lot of events just aren’t worth doing to fundraise.
One thing that is very powerful, is if there’s a local event happening, ask if they will collect money for you. Because then it’s the events happening and I’m thinking actually some friends of mine who I’ve never met, were doing an event in the UK and they knew about my cancer. They collected money at the event, and it was um quite a significant amount of money, very early on when I had zero money, and it was amazing. So thank you for that, Carl and Dan and all the members of the teletext Facebook group, I really appreciate it .
So that’s a super way to raise a lot of money – to have friends and family raising money on your behalf .
I should finish there as always I go on far too long. I hope that has been useful. Crowdfunding is massively important as a cancer patient. It shouldn’t be. Healthcare should be free for everyone, everywhere at the point of use, if you have a terminal illness. I strongly believe that the expenses related to that should also be covered by society. I don’t feel that just for touchy-feely reasons, but just hard economics. It’s much more sensible to take care of people with serious illnesses and give them the best possible treatment as soon as possible. That’s cheaper in the long run for countries.
Anyway that is far beyond the scope of this topic, but thank you for listening and I hope you found it useful.