Helen Maxwell

The Good Life At what Price?

From the moment that my rheumatoid arthritis was diagnosed in September of 1987, it tore through my tiny body with a vengeance. Inch by inch, cell by cell it destroyed the very inner working parts of my body; my neck, knees, hips, elbows, ankles, fingers, wrists and even my jaw! I was pumped full of drugs, many of them dangerous in the long term, such as anti-inflammatory and Steroids. In the years that followed I had many stays in hospital, ever-changing drug regimes and operations. The surgical route was followed when I was just 14, when after 4 years of this vicious disease ripping me apart, I had my hips replaced. It wasn't the best scenario, but it was then or never, as my bone was being destroyed at an alarming rate. The hip replacements were, unfortunately, a slippery slope and over the following 8 years I had a further 7 operations on different parts of my body. My knees were replaced, my hips came loose and were re-replaced and a fusion of my neck was carried out when it became dangerously unstable. Then most recently, but somewhat dramatically, both of my hip replacements were removed after years of aggressive erosion left my pelvis incapable of holding onto new ones. I have had 14 years of hospital appointments, drug therapies, tests, operations, pain and fatigue. The kind of fatigue that, by the time you've got out of bed in the morning, taken tablets, washed and dressed, you're in need of a nap just to recuperate!

But unfortunately, I am not alone in my pain. According to Arthritis Research Campaign (ARC), there are an estimated 350,000 people in the UK who have Rheumatoid Arthritis. Granted, many of them will have significantly less problems than I, but a percentage of them will have the same and worse.

Unlike the more common form of arthritis, osteo, rheumatoid is a disease that has many long-term implications and all encompassing symptoms. Imagine the worst bout of flu that you've ever had, then multiply it by 10, then add swelling, stiffness and pain to your whole body. Imagine being in so much discomfort, that the cold draught from an open window, leaves you wincing with pain. Imagine trying desperately not to cry, for the movement of your ribs as you take extra breath leaves you in agony. You want to cry, but the tears hurt your face, and even if one did roll down your tender cheeks your arms would be too stiff and painful to lift to your face to wipe it away. When you can imagine all this, you're a step closer to understanding rheumatoid arthritis and closer still to understanding exactly why it is that people across the country are begging for access to a new drug, being deemed as the 'wonder treatment' by all who have knowledge of it.

For the many of us that are in this situation, the thought that there is some light glimmering at the end of this incredibly long tunnel is almost incomprehensible. Those of us who have tried the older 'effective' drugs over the years with little or no effect were wary of this new 'wonder treatment'. We had heard all the hype before. Many moons ago, consultants believed that steroids would be our saviour. Instead they found that although they helped many people, the long-term side effects were dangerous and the damage caused by them irreparable. I held my breath after my very first dose of Remicade, which was administered by an intravenous infusion. I tried desperately not to get my hopes up. I knew this wouldn't be a cure. Just one week later my fears were laid to rest. It truly was remarkable. Swelling around my fingers and wrists drifted away, I had knuckles reappear where there was once just a mass of puffy skin. I had energy and a general feeling of well being. Many others and I were astounded. I started to reduce my intake of steroids, being able for the first time, to tolerate less than the 8mg which I had been on for years. This Remicade had earned its title of 'Wonder treatment'. So for the first time since my diagnosis the future isn't as bleak as we had all once thought. However, the drawback to this drug, as is always the case in modern medicine, is its cost. For one patient, for one year it costs on average £8,000. But while health authorities up and down the nation do their best impression of a cowboy plumber, sucking in air through their teeth, muttering "... it's only a cost" approximately 450 people in Wales are being denied the right to well-being. These people have to stand and watch as the 45 people across Wales who are receiving it, progress to some semblance of 'normality' and a life with less pain.

Okay, let's look at this from the NHS' point of view. We all know that there are increasing waiting list times, especially for orthopaedics, and that patients are, so they say, being treated according to cost not necessity. But one of the glaring reasons for this is not necessarily failing government, but the many successesex in medical science occurring every day. Research is paying off in many fields from coronary problems to multiple sclerosis and for each extra treatment you can give a person the cost grows. Yes, there are more people waiting for heart surgery today than 5 and 10 years ago. But surely this has a lot to do with the fact that more can be done for people with heart problems. But just as every patient on that waiting list deserves the operation or treatment they are waiting for, the money to fund it has to come from somewhere. No matter who's in government, there will never be a bottomless pit of money for the NHS. But what compounds the misery of those working with, for and around the NHS is how those in the upper echelons of the government choose to spend what money they do have on frivolous ideas such as building a structure to welcome the millennium. A building that would cost far in excess of its agreed budget and only serve to welcome society to the fact that this government was way off the mark in understanding the needs and beliefs of the people in this society. I have lost count of the times that I have stood in a queue, listening to the person next to me comment on how that excessive amount of money would have been best placed going into helping the NHS to survive this difficult time. But instead, the NHS is left to struggle. For each cause and illness there is a group campaigning for the patients with that illness to receive the treatment and care they require and often times, those with the loudest voice win. What has to be weighed up in many cases, is at what cost can people expect to receive their treatment. In my case, I have already cost the NHS thousands of pounds in theatre time, not including all the occasions I have been admitted for physiotherapy, the drugs that I have been taking to date and the copious amounts of splints and aids that I have acquired. My income consists of benefits as I am unable to work enough to support myself and I receive minimal social services care. Without the Remicade, it's safe to say that I would have a considerable amount of surgery and hospital admissions ahead of me, and with each year my health would decline even further, meaning I would need an increasing amount of 'older' treatment and care. But now what? If this drug can halt the disease, which it shows signs of doing, the amount of treatment, operations and care that I would need in the future would be less likely to increase; I could even stay as I am for many years to come! In other cases, people who are currently heavily dependent on those around them may be able to return to work, saving the government in the long term, something which they have been working towards for some time in their own policy.

So the crux of the matter is; would it cost everyone concerned less not to treat us with this new drug and continue as we are. Or allow the 500 people in Wales entitled to it under the criteria as laid down by the British Society of Rheumatologists, access to the drug which would benefit their future and subsequently, the futures of many other people? And if asked the question, do I feel that people should be deprived of this treatment because there is a funding issue I reply, definitely not! Do I feel that funding will always be an issue for treatments such as this? Unfortunately, yes. Should those with rheumatoid arthritis who require this new drug be allowed to have access to it without having to constantly campaign to the media to make their voice be heard over the next person? 100% yes! And what do I say to people who would argue this point with me? "Bring it on."