A Few New Year’s Wishes and Thoughts from one of the many MOM ‘Victims’!

Well, 2013 is finally here, the world didn’t end as the Aztec’s planned, there is still war and trouble in plenty of places in the world, people are suffering and starving on a greater scale than ever before, Women’s rights are still being violated in many countries, I heard last night a study has proven that I (and all of you unless gifted) would be paid more if we were more attractive!, and as we all know, Medical companies, ignorant or biased (read funded) surgeons, government regulators and in some cases even those we should be able to trust with our healthcare continue to turn their backs on those of us who have been hurt, injured or permanently maimed by the ‘miracle of metal-on-metal’ (MOM)!! I know that this doesn’t sound like the most positive of introductions, but please indulge me and read on, I hope to give all of you, whether you are the one who is carrying or used to carry the MOM joint, those they love and cherish or those charged with the great responsibility of looking after one of us, something to take forward into the New Year!!

Firstly, to all of the amazingly strong (even if they don’t know it) people I have met through this blog and elsewhere, you might still be perceived to be ‘a Birmingham/ASR/DePuy/Pinnacle/J&J/Smith and Nephew/’insert your MOM hip type’ Patient to the many Doctors and healthcare workers who are charged with your care, but to me you have all become inspirational, strong, supportive and faithful colleagues in our on-going battle for truth, honesty and equity in our healthcare, recognition in many cases, and for all of us that treasured return to somewhere near reasonable health! The old nurse in me rankles every time I heard myself referred to as ‘that guy with the ASR’ (even after the bloody thing was physically gone!), or the ‘J&J hip in bed 12’, or my personal favourite, ‘that unlucky hip patient’, I now wear all of these ‘titles’ as a badge of honour, but I am always quick to point out to anyone I hear using them that I do indeed have a name! I just want wish Bob (who first raised hell here in Australia on behalf of J&J ASR Patients and who continues to this day to fight on behalf of many who can’t speak for themselves and particularly has taken the cause up to the Regulator our TGA, and who regularly puts up with my rantings!), Earl (creator extraordinaire of this amazing communication portal and therefore an activist in his own right!), Brooks (who my thoughts are with even though he is ‘on the other side of the world’), Howard (a true spirit of determination who will not be denied when the chips are down), Meg (a new friend who also hails from the healthcare industry), Anna, the 2 Connie’s, Paul, Jan, Joseph, Mary and all those others who I haven’t named whether they are ASR, Birmingham, Pinnacle or whose ever MOM ‘patients’ (or loved ones), the very best for 2013 and the strength, will, determination and hopefully health to continue to learn, communicate and fight for all the things we need to get passed what has been put in front of us!

Secondly, apart from the good doctor Steve, my current Orthopaedic Surgeon and a very small group of their esteemed colleagues, I hope and wish that the members of the medical profession, Orthopaedic or otherwise, will continue (or start in some cases), to open their eyes to EXACTLY what is being presented in front of them when a MOM ‘patient’ visits with them. This may be as simple as putting aside the rhetoric that certain device manufacturers, Johnson and Johnson/DePuy, Smith and Nephew, Stryker and anyone else who has produced or marketed a MOM implant, is more than willing to share with them, to actively participating in the collection of data or evidence about the physical, emotional and psychological symptoms that their patients are returning to them with! The elephant in the room here is those surgeons that may have or had a financial or other benefit to gain by using or endorsing these products, please remember, we all make mistakes, the evidence continues to mount against this technology, unless you have ‘sold your soul’, you can still retreat from the impact that these devices are having and set your own conscience free by working toward the development of ways to treat the side effects of these devices or at the very least actively participating in the gathering of evidence or data that will allow others to come up with these solutions. (Note: I am not naïve enough to think that there still aren’t surgeons out there that think they have done the right thing and we are all to blame, to them I can but only hope for some enlightenment in whatever form that takes, blow to the head anyone!) I know of surgeons here in our local area who have made statements like: “you patients are ruining the name of a good company”, “you patients are just in this for what you can get out of it”, “there is risk with every surgery and you need to understand that everyone has side effects”, “pain is an acceptable side effect of joint replacement surgery and you just need to learn to manage this”, “there is no genuine validity in these Cobalt tests”, to “the company told me that their product was good and these are just a few isolated bad reactions”. I hope that these statements shock a few of you and no doubt they won’t surprise others who have been subjected to them and similar, but unfortunately I and many others have been subjected to them and their like so again I implore the medical profession to remember what device manufacturers have a great deal of difficulty with, ‘Patient safety comes before all else when making treatment decisions and administering those treatments’ (this includes financial or reputation considerations). To Doctors’ Steve, Ross, Tony Nargol, Tom Joyce, and your enlightened colleagues I can only wish you all the best for 2013 and please for all our sakes, keep up your vital work and attitudes and hopefully for those of you who suffer scorn for standing up for what you believe in, that those that offer this up are soon converted by the over-whelming evidence you have helped to collect and understand!

Thirdly, to the Medical Device Manufacturers, I know I may well be wasting my time on this one, but here goes anyway! If you were involved in the development, production and distribution (or any point individually) of a MOM device, please work out a way that you can be actively involved in or fund from a non-outcome determining standpoint (so that your support financially or resource wise cannot ‘influence’ the findings) research into this simple question: “the effects of Cobalt and Chrommium Ion release in the human body” (Doesn’t even need to be at toxic levels). The results of this will then lead to further research into what ‘else’ we can all expect down the track and funnily enough give these manufacturers something to tell all of us so that a) we may have an idea what to look out for, b) stop blaming every single health ailment we have on that damn MOM hip, and c) actually start to develop some treatments/plans (heaven forbid) that might just afford all of us the opportunity to at least return to some semblance of a quality of life. The other big thing I wish for all of these manufacturers is that you ALL drop the charade and confess what you knew all along and finally admit you made and sold a complete dud of a product and sadly people got hurt! Did you ever think that if instead of avoiding responsibility, that if you took responsibility and genuinely started helping the people you have hurt that maybe you might just avoid some of the pressure caused by having your company dragged into court multiple times and any semblance of a reputation that you have left completely destroyed! Hey, call me a dreamer but it is a new year and stranger things have happened!

Finally, just before Christmas my wife and I were involved in a couple of amazing things. First off we had to attend a hearing in the Federal Court of Australia where Johnson and Johnson/DePuy wanted applications heard that would allow them to instigate a brutally unfair and ill-informed attempt at a Compensation Programme for the ASR patients who fit certain categories (that were determined by J&J/DePuy) and to cut a long story short it was aimed at the elderly patients at a time when they would potentially be vulnerable or just want to be done with the whole mess. I had been asked to write a response to this program on behalf of the patient group by our legal team and they had incorporated this into their defence of the applications. When the J&J/DePuy legal team realised we (and Jan and Joseph 2 fellow patients) were in the court, they panicked, through this whole surreal process all applications were dropped and they wanted to move the case straight to mediation (something the lawyers have claimed they were trying to do for months, we achieved through our presence and willingness to ‘be seen’ by these people, in a couple of minutes). This was a definite win for the power of people’s ‘presence’, whether it is in a court room, at a government hearing or simply by fronting the media if you are asked. I am not saying that everyone has to speak to journalists, but the more we all tell and share our stories, the more experiences we all have to share when talking to someone new or with each other, we are sharing the power of knowledge, and believe me, the last thing any of these companies want any of us to have is power! We all need to continue to use this blog (and others), our individual communications with each other and to also introduce any new patients we meet into the grid to ensure they are given as much information as possible and that we continue to build strength through unity of purpose. The other thing we can do is ensure that if there is a ‘hearing’ or court date on, that as many of us as possible make the ‘visible presence’ that these companies don’t want the case/s to have. I assure you a journalist/photographer are going to be far more interested in talking to a person or group of people who are obviously suffering than they are to a scientist or doctor who wants to use a series of sketches to describe what we are going through! We have all the power to affect this!

The other thing we did was to meet with very senior figures of the two companies involved in my implant. We did not discuss compensation or money, however we did try to make them understand exactly what we had gone through as a family and we discussed all of the things I have said above about what we felt they should now be doing as far as research goes. If you feel up to it and have the opportunity to meet with those who have put you in this situation, I thoroughly recommend it and would be happy to discuss with people how they can go about making this happen.

So as I sit here today, exhausted after another poor sleep on my chair but eagerly anticipating the weekend departure to our family holiday with sun, sand and heaps of things I can no longer do! I wanted to share all of these thoughts’ with all of you and of course the key players in how we got here! Of course I haven’t even begun to look at the regulators and bureaucrats who supposedly monitor the use and distribution of these devices, that can be for another day. So I say to you all again, don’t give up ever, share your stories or those of your loved ones, get involved in conversations about this either through forums or blogs such as this one and above all else please don’t be afraid to use your voice and speak up about what has happened to you!! I do sincerely hope that 2013 is better and healthier for all of us, and I sincerely hope that we ALL get our day in court and EVERY company that has had a hand in this MOM technology is finally held to account for what they have done to each and every one of us!!

Have a great year,

Stuart Cain