Fund raising and awareness of RA and other autoimmune diseases - or the lack of...

I've been stopped twice in the last week, at the same supermarket, by people fundraising for cancer research. Now, before anyone gets up in arms, I totally get the need for cancer awareness and fund raising, and am only too thankful for the good work that's been done in the field to improve diagnosis and treatment protocols. 

BUT...and it's a big, daily but, for me... I have an incurable, chronic disease. It's unlikely to kill me, although, severe RA and its co-morbidities and complications can cause death, and has. Ask yourself though, did you know that? Readers of this blog who have RA or another autoimmune (AI) disease probably do, and perhaps some of their friends and family members. However, it's highly unlikely that the average person on the street does. Because, RA is still, in the minds of many, 'just' arthritis. Like their granny has... the odd sore joint that slows them down a bit, and hurts when the weather gets cold. Not to minimise the potential devastation of osteoarthritis (OA), either, but RA is a systemic disease - unlike OA. As is Lupus, Sjogren's Syndrome, Psoriatic Arthritis, Spondylising Ankylosis, Type 1 Diabetes, and many, many more. And not a single one of them can be cured. 

Before writing more, I'd just like to say that this is a really hard post to write. I don't want to come over all whiney, and 'poor me' - that's not the aim of the exercise at all. I don't want it to sound like there's some kind of competition between cancer and autoimmune diseases, because there's not. I also don't want to offend anyone - that's the last thing I want to do. I just want people to stop for a moment and consider what I'm saying, and try to understand where I'm coming from, because that's what real awareness is about. 

So where the hell are the tables with bright faced young things raising funds for autoimmune diseases? Seriously...where? 

There aren't any... 

I don't donate to cancer research. Not because I don't think it's worthy of my money. But because thousands and thousands of people already do, and there are more foundations for different types of cancer than I can poke a stick at. So many labs devoted to cancer research here and all over the world, doing excellent work and making important breakthroughs regularly. Which is marvelous. And necessary. 

When it comes to autoimmune diseases though, that's just not the case. I honestly don't know why that is. It can't be based on the numbers. The Australian Institute of Health and Welfare report from 2014-2015 reported an estimated 407,900 people in Australia have Rheumatoid Arthritis alone. That's - if my maths are correct - something around 1.76% of our current population. That's NOT a small number.And goodness only know what the current numbers might be.

Is it some sort of twisted kind of 'glamour'? In a world that is being fed by dramatic press headlines, those depicting celebrities fighting cancer appear to be increasingly frequent. And there is that concept of the 'brave fight', particularly when, tragically, someone dies...losing that brave fight. 

More celebrities have been 'coming out' about their autoimmune diseases. At the same time, their experience can look very different - and I've seen comments on forums where people make a point of making that an issue in itself...ie, those people, regardless of the diagnosis, have more means than the average individual to make life easier despite the diagnosis. The same could be said for celebrities with cancer, I guess. But ultimately, we're still all people, and no fame and/or fortune can change the fact that being sick - whether it's cancer or an AI disease just plain sucks. 

I wrote about this when my dear friend Lizzie died from ovarian cancer. It's her birthday today, along with No.1 son... Lizzie had also been diagnosed with RA some time before the cancer diagnosis. Ironically, I have seen in RA circles online people who have RA and are struggling with the kinds of lack of support and understanding that are common for many making the statement that they 'wish they had cancer' - on the basis that cancer HAS a level of awareness and understanding that autoimmune diseases don't have. There's no way that Lizzie would have subscribed to that particular idea. She was all too aware of the different playing field offered by her cancer diagnoses. Tragically, as is the case for all too many of those diagnosed with ovarian cancer, the diagnosis came far too late to offer her reasonable odds of survival. So, I've never wished I could have cancer instead of RA, just to have more awareness. 

Awareness and fundraising are important though. Incredibly important. Research takes time, and requires money to fund staff and facilities so that it can be done, and done thoroughly. I did a Google search for current research specifically being done for RA in Australia, and found two main places. TWO. Two sites of research for a disease that close to half a million people in this country have. One is the Garvan Institute in Sydney, and the other is the University of Queensland. The latter is working on what they're calling a 'vaccine' for RA. I'm not entirely sure how you vaccinate for an AI disease, to be honest. From what I've read though, they've tackled the research along the lines that I've always thought seemed most logical - figuring out how to turn OFF an autoimmune system that has got stuck on overdrive...because by doing that, effectively, you stop the disease process entirely. Current treatments only slow that process down by inhibiting the overactivity. The UQ model aims at flicking an off switch to stop it.

Garvan, on the other hand, are looking at a treatment that sounds as if it may work similarly to current biologic drugs, but it is targeting cells in the inflammatory process rather than the autoimmune process, in a way that can be effective earlier in the immune response that's attacking the patient's own cells. It could have a similar effect to the UQ model in shutting down the disease activity altogether. 

What isn't clear with either project is whether the proposed treatments are something that the patient then needs to be on long term to maintain the status quo - which, to my way of thinking, puts them into a treatment classification rather than a cure. I don't know if - should they work - you'd then have to remain on that treatment, because coming off it again would allow the disease to start up again.

Overseas, there is work being done with an electronic implant that stimulates the vagus nerve - a project that started when a neurologist (I think - I can't find the original article I read about this) started to wonder if it would be possible to interfere with the inflammatory system via the nervous system. The vagus nerve controls TNF production (tumor necrosis factor, a chemical in the system that is a primary component in the inflammatory response - the first of the biologic drugs on the market, which are still being used, are TNF blockers) so the implanted device sends a signal to the vagus nerve which stimulates a response that interferes with that process - effectively reversing the disease. Early human trials have had some promising results, although they've been relatively small samples. At this stage, the consensus appears to be that it's potentially a treatment that can be offered when a patient has failed to respond adequately to current drug protocols, as it's invasive, and once implanted, rules out future MRI scans (a major diagnostic and monitoring tool), due to it being metal. Again, like the two previous projects, my question is, does that mean that once implanted, the device has to stay put for the rest of the patient's life? Is the 'cure' conditional on the ongoing presence of the device?

Receiving the infusion of the biologic drug that's keeping my RA controlled.

While these projects are all encouraging and indicate to me some logical new approaches in research for RA, given the numbers of people who are affected by the disease, they're disproportionately small. And awareness of the disease and its affects on the daily lives of patients certainly isn't on the increase. On the television last night, the Ride for a Cure was being advertised. It's an annual long distance mass cycling event that people can do to raise money for cancer research. A friend of mine did a similar one last year, riding from Canberra to Sydney over three days. Dragon Dad, being a cyclist, voiced the idea that he'd like to do it one day. He did do a two day ride that was to raise funds for cancer research a few years ago - 100kms each day. I forget how much he raised, but he had to raise a certain amount before he'd even be eligible to ride. When No.1 Son did the Noosa Triathlon last year, he was racing to raise funds for cancer too. 

Then, last year, I stumbled across a cycling event for RA that popped up on Facebook because of the algorithms that govern my newsfeed. I clicked on the page, and there it was - a ride from Canberra to Adelaide to raise funds for RA...only it was nearly over, and I'd heard absolutely nothing about it via any of my channels prior to the event. When I hunted around online, I found a reference to it on the Arthritis Australia website two days before it was due to start...but no active promotion, which I thought was appalling. The event itself was instigated by a cyclist whose partner has RA. In the conversation I had via Messenger on FB, they said it was a one off. MAYBE they'd repeat it, but that wasn't a given. Dragon Dad was really disappointed - he'd have gone and done the ride with them had he known. He'd have promoted it like crazy too, because that's how he rolls. He'd certainly have contacted all the television stations and newspapers to try and get coverage - as there is for the cancer ride. I don't know how much money the cyclists raised - there was no follow up on their FB page or the Arthritis Australia site. Given that that's our mainstream agency in this country, that's just not good enough. 

Both of the times I was accosted at the supermarket last week, I stopped and said that no, I wouldn't be donating, and I told the girls why. The first time, with two girls on the stall, one of them introduced herself and asked my name, then told me she totally understood, as her mother had recently been diagnosed with MS, which has now been classified as an AI disease. She wished me well. The other girl with her tuned out and looked as if she was trying to be anywhere else but there at that moment. Similarly, the second time - one girl on her own - she looked uncomfortable, and clearly didn't know what to say, so said nothing.

Somehow, this status quo has to change. These diseases, collectively, affect millions of people in Australia. There needs to be better research funding, because if cures CAN be found, many of those people will be able to re-enter society healthy and capable of living fuller lives than many currently manage. It will mean many will be able to go back to work - something so many of us can no longer do. It will mean fewer people are living with chronic pain. It will mean so much for so many... So, next time you have an opportunity to donate to medical research, think about the diseases that don't receive so much funding, and maybe pick one of those.