Viva For Your Health

According to a recent study by the Cato Institute of Britainâ??s National Health Service (NHS), there is no perfect scenario when it comes to health care.  On one side of the spectrum is the desire to have unlimited medical care to extend oneâ??s life as much as possible, and the other end of the spectrum is to ration care to control spending.

The NHS is a centralized government version of the one-payer system in England, and it pays directly for health care and finances the system through general tax revenues.  Most physicians and nurses are government employees.  Below are some key statistics to keep in mind when looking at a government system without competition.

• Waiting Times. Presently as many as three quarters of a million Britons are waiting to be treated in Britainâ??s hospitals. Cancer patients, for example, will wait as long as eight months before being treated. A byproduct of that wait is that maybe 20 percent of colon cancer patients who were initially considered â??treatableâ? when first diagnosed, will become â??incurableâ? as a direct result of all that waiting. Even more alarming is the fact that as many as 40 percent of cancer patients have never even been seen by an oncology specialist.

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• 50-70% wait longer than 18 months to see specialists. In 2008 Britainâ??s goal was for a wait time of no more than 18 weeks.  The study showed that only 30-50 percent of patients actually received treatment within the 18-week time frame. Whatâ??s worse is that only 20 percent of orthopedic and trauma patients received care from a specialist within the18-week target window.

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• Rationed care. Not surprisingly, a direct result of Britainâ??s over-taxed system is that certain types of care for more expensive procedures such as open heart surgery and kidney dialysis are now â??rationed.â? Even more alarming is that patients deemed â??too illâ? or â??too oldâ? for a procedure to be â??cost-effectiveâ? are being denied treatment altogether. One government â??solutionâ? being proposed is that the NHS be allowed to refuse treatment to those with â??unhealthy lifestylesâ? such as smokers and the overweight.

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• Widening gap between NHS and private insurance. Another solution is â??competitionâ? in the form of private health insurance. Currently about 10 percent of Britons have private health insurance, and that number is growing, as more and more Britons seek to gain access to a wider choice of healthcare providers and avoid waiting lists.

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• Growing demand for private health care. Studies conducted on the British public indicated that 63 percent felt the need for healthcare reform is â??urgent,â? and another 24 percent believe that it is at least â??desirable.â? Even more telling, however, is that 60 percent of Britons believe that making it easier for patients to spend their own money on health care would â??improve quality.â?

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Things you will want to know about Britain before you visit

• The best times to visit are May, June, September and October
• Heathrow Airport handles 67 million passengers a year
• Britain is 35 miles from France
• 80,000 umbrellas are lost annually on the London Underground
• Britain receives on average between 20-35 inches of rain per year
• Nowhere in Britain is more than 75 miles from the sea
• Cars drive on the left hand side of the road
• Voltage is 240 â?? do not use your 110 American appliances!

If you are a celiac, your miracle cure is under way – being trialed in Melbourne Australia from April 2009! It could conceivably desensitize people with celiac disease to the point that the villi in their small intestine are not damaged by the gluten protein. However with the need for extensive testing in this three phase trial, the vaccine may not be ready for release for several years.

Before we go into the details of such a cure it should be noted that this vaccine might not be a â??magic bullet’ that makes people permanently immune to the gluten protein, it might ‘only’ desensitize them. Also be aware that if you choose to undertake the â??therapy’ there are no guarantees of how you will react, and the only way to regularly check to see if you have been â??cured’ would be regular intestine biopsies. As it is known that some people take over two years to heal their intestines from gluten damage, how risky will this strategy be? It is expected that testing will be extensive so these questions may all sit under the â??devil’s advocate’ category, and all may be well.

An even more philosophical question is what effect covering up the cause of your disease will have on your body. Books have been written that suggest that it is the increased gluten potency in wheat and other gluten grains as well as increased use in manufactured foods that has led to an overdose of gluten. Our bodies then pass a â??tipping point’ where our genetic predisposition to CD turns into an active disease. If this is true, how wise would it be to continue ingesting unnaturally high levels of gluten, once â??cured’ just because we can? Sure it would make life simpler not following a gluten free diet, however maybe we should wait for gluten to be decreased at the source, the growing fields, before we return to a gluten filled diet.

Different types of celiac disease identified

With all these issues under consideration, I am sure that every celiac would still be interested in a â??cure’. A July 2007 article based on research conducted in Victoria, Australia, showed that “Celiac disease – is strongly associated with human leukocyte antigen (HLA) DQ2 and to a lesser extent with HLA DQ8.”

“HLA genes are part of the major histocompatibility complex (MHC), which plays a pivotal role in the immune system. HLA-DQ2 mediated celiac disease is common in people of European ancestry, with about 90 per cent of sufferers positive for DQ2. Another five per cent possess HLA DQ8. In China and East Asia, DQ2 genes are rare while DQ8 genes are as common as in Europe.”

So it appears that this preliminary research has been able to isolate two main versions of celiac disease. However the molecular workings of the immune response in the two antigens appear to be very different. The researchers discovered that T-cells in people with DQ8-associated celiac disease reacted quite differently to the small proteins in gluten than the T-cells in people with the DQ2 form of the disease.

“At the moment a gluten-free diet is the only treatment for celiac disease but nearly half the people on the diet still have damage to their small intestine. Consequently other therapies, including a vaccine and three different drugs, are in various stages of development. The research team believes celiac disease might be the first example of an immune disease where treatments are customized according to the genetic make-up of the patient.”

The celiac vaccine discovery

The discovery that lead to the creation of the vaccine was that the one critical part of wheat gluten protein that was toxic was the common genetic version (HLA DQ2) of celiac disease. “As much as the identity of the toxic component of gluten was important, it was the way in which it was found that has proven to be even more important. By eating gluten in wheat, rye, or barley for three days (even a single meal will suffice in some people), immune cells (T cells) that damage the small intestine are mobilized into blood for a few short days. The T cells in blood can be monitored and analyzed to define what part of gluten they recognize. The parts of gluten recognized by the vast majority of T cells involved in celiac disease can be condensed to a few “short” fragments of gluten that remain after its digestion in the gut. These gluten fragments can be synthesized using fairly standard chemistry and are the basis for the celiac vaccine.”

The Celiac Vaccine Trials

The original research began at Oxford England in 1997. The work continued in Australia in 2002 and by April 2009 Bob Anderson from the Walter and Eliza Hall Institute of Medical research (Melbourne, Australia) will commence the first world trials of a celiac vaccine that could reduce or eradicate the need for being gluten free. In fact Bob Anderson calls the vaccine a “next-generation desensitization therapy” that has been successful in mice and is soon to be tested on celiacs.

“The vaccine will be tested on 40 volunteers with celiac disease over 11 months to establish that it does not harm them. In a subsequent phase 2 trial, which is designed to find out if the treatment is effective, volunteers will receive the treatment and then be challenged with foods containing gluten. Their immune response and intestines will then be examined to see if a tolerance to gluten has developed. The therapy involves repeatedly injecting solutions of gluten at increasing concentrations. The aim is to desensitize the subjects slowly, in a similar way to hay fever and dust allergy desensitization treatments.”

Testing process

“For a new drug to be accepted for use in people in Australia, Europe, or North America it must have progressed successfully from Phase 1 (safety) studies usually involving up to about 30 volunteers, to Phase 2 (efficacy) studies to show that “it works” in people with the medical condition of interest (typically about 200 volunteers in several locations around the world), and to Phase 3 (similar to Phase 2 but involving several thousand volunteers in many sites around the world).”

The celiac vaccine future

Due to difficulties in funding, Bob Anderson (Walter and Eliza Hall Institute) co-founded a commercial company called Nexpep to develop the vaccine. Nucleus Network, Centre for Clinical Studies (CCS) in the Alfred Hospital in Melbourne, will be conducting the Phase 1 clinical trial.

The difficulty he has faced, besides the technical issues, is the low diagnosis level of celiac disease and the mass of associated symptoms has made a vaccine cure unattractive to traditional pharmaceutical companies. These companies always prefer well defined markets to accurately forecast payback periods for their R&D and marketing expenses.

The facts are that for this vaccine to prove financially viable, The US will need to approve the drug and doctors and celiacs will need to accept the treatment. One report estimates that only 600,000 people are diagnosed with celiac disease (out of the 5 million with celiac disease in North America and Europe). Â

Compounded to the funding challenges is that previously, globally, there have only been three “randomized, controlled” studies of the gluten free diet – one in children and two in adults – the largest with 57 participants.”

The assessment of the vaccine treatment will require repeated endoscopy and collection of small intestine biopsies which are expensive and un-enjoyable for volunteers. However a recent trial in Italy has shown that biopsies are still the only â??almost’ guaranteed method of assessing gluten damage. The study findings showed that “two years after adopting a gluten free diet, about half those people diagnosed with celiac disease continued to have villous atrophy as severe as when they were first diagnosed. Only about one in five of those with severe intestinal damage (villous atrophy) on a gluten free diet had raised (abnormal) blood levels of transglutaminase antibody, meaning that standard blood tests to monitor disease activity were relatively ineffective.”

So while the development of this vaccine is an important step in potentially eradicating celiac disease, philosophical questions still remain as issues for the long term efficacy of the vaccines. As an Australian first, this research is applauded by the gluten free community. We wish the researchers and medical staff all of the best in demystifying this illusive disease.

Article references are available on the gluten free pages website.Â

This is the story of ‘Rosie” who had to wait seven months, because of a dire Irish Health Service, to see a consultant for bowel cancer.

This brave ladies’ real name was Susie Long and she passed away in October 2007…she really never had a chance because she didn’t have Health Insurance. She left behind two teenage children.

Below is her letter to our national broadcaster RTE…Joe Duffy’s Liveline Program.

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Dear Joe,

Today I had my 12th session of chemo. I got to talking to the partner of a man who was also getting chemo. She told me that when her partner’s GP requested a colonoscopy for him he was put on the waiting list. She then phoned the hospital and told them he had private health insurance and he was seen three days later. He had bowel cancer that was advanced, but had not broken through the bowel wall and spread to other organs. She said the tumour was the size of a fist and what made him go to the doctor (apart from her nagging) was he started to lose weight rapidly. Thank goodness they got it in time and he’s going to recover.

I then came home, flicked on the tv and got into bed. The first ad on the tv was from the government telling people that bowel cancer can kill, but not if caught in time. If Bertie Ahern or Mary Harney or Michael McDowell were within reach I would have killed them. Literally. I’m not joking.

I don’t have private health insurance. It’s a long story, so I’ll start at the beginning.

I’ve suffered from digestive complaints for years. It started out with being unable to eat in the mornings or when my stomach felt tense. I’d feel too queasy. Then I got heartburn after just about everything I ate. I lived on Rennies. Then, in 2005, I got a lot of diahrea and after a few months it became constant and blood accompanied some of my bowel movements. I went to my GP clinic in the Summer of 2005. Probably about 2 months after the blood started appearing. I look back now and feel stupid for delaying for 2 months, but I wasn’t sure if the blood was caused by piles, which my late mother suffered from. I was 39 years old and had read in books and heard a doctor say on tv that bowel cancer doesn’t affect people under 50. Anyway, my normal GP was on holiday, but I saw his colleague, and she immediately sent a letter to the local hospital requesting a sonogram and a colonoscopy. Within weeks I was called for a sonogram and was diagnosed with a gallstones. That explained the queasiness and the heartburn. I expected to soon be called for the colonoscopy. I waited through the autumn, then through the start of winter. No word on the colonoscopy and no word on when my gall bladder would be removed.

In November I started to get serious lower abdominal pain after eating. I phoned the consultants secretary and asked if I was on the waiting list. She assured me I was and would be called soon. In December I started to rapidly lose weight. This definitely wasn’t like me! I love my food, Joe. I phoned the hospital again after Christmas. Again I was told that I was still on the list and would definitely be called soon. (I later found out that that consultant had retired and they had just hired a new one). Joe, from November to the end of February I was in agony. Apart from the pain and diahrea I was tired all the time. I’d literally got out of bed to go to work at 4.30 in the afternoon. Came home around 10.30pm, ate my dinner (I couldn’t eat before work because it’d make me too sick to do my job), tidied the kitchen and went to bed again. I was miserable.

Finally, on February 28, 2006, four days after I turned 40, I was called for a colonoscopy.

I woke up in the middle of the procedure and saw on a large screen, them probing a blob on my colon. They were taking a biopsy. But I didn’t have to wait for the results. I knew what I had. Soon after I met my wonderful consultant, Dr George Nassim. What a gem he is. Friendly, compassionate and funny on top of being a great surgeon. I felt like I was in good hands. I didn’t panic for more than a few hours after I was told that I had cancer. They can do loads of things to save cancer patients these days. I was young and strong. I’d been a vegetarian since I was 16. I ate mostly healthy foods, although eating at night was a serious no no when it came to my weight. I went for walks a few times a week. I felt I could beat this.

I was booked in for surgery to remove the tumour. I was given a stoma, which means I’ll have to poop in a bag for the rest of my life. I found that really difficult to handle. More difficult than the cancer sometimes. I was in St Lukes hospital for over 50 days last year. (I had to have a second surgery due to complications) Recovery was hard, but I did it. I shared a room with two lovely women who also had cancer. They have since died. In another ward I was in I was next to another woman who had cancer. She died too. The staff at St Lukes in Kilkenny are the most kind, hardworking people I’ve ever met. In March, in between surgeries, I was sent to the Mater in Dublin and had a porto-cath put in for putting the chemo through, and a PET Scan to see if the cancer had spread. If it hadn’t, I’d live. If it had spread to other organs, I’d die. It had spread to my lungs.

I felt bad enough to go to the doctor. She did what she was supposed to do. She told them I had diahrea and blood from my rectum. But what could they do? So do lots of people. Should I have skipped the list ahead of those other people with the same symptoms? I don’t think so. Should there be a list so long that it puts people at risk of dying? No. Definitely not.

I know in my heart and soul that when I started to feel really, really bad, especially in from December to February 2006, is when the cancer broke through the wall of my bowel. Of course I can’t prove it. But I know. Because it broke through the bowel I have been given 2 to 4 years from diagnosis to live. The chemo is to prolong life, not to save it. I have 3 years, tops, to go. Despite that, I’m going to try my best to make it for 5 more til my youngest turns 18. He needs me too much now. My husband has suffered right along side of me in his own way knowing that the woman he loves will be dead soon. My 18 year old daughter has been told and has gone quiet and doesn’t want to talk about it. But I know she’s scared. I haven’t told my 13 year old son yet. He’s too young to handle it. The South East Cancer Foundation in Waterford have been very helpful and will help us when the time is right to do and say the “right” things.

I don’t blame the wonderful people who work in St Lukes in Kilkenny. They work with what they are given. St. Lukes has the best A+E unit in the country. I had to use it three times in 2006 and twice with my son (nothing serious, thankfully). What did the government do? Threaten to shut it down. They also threatened to shut down the maternity unit AFTER spending millions to improve it!! That would mean Carlow women would have to travel to already overcrowded hospitals in Dublin and Kilkenny women would have to travel to Waterford, which is grand if you live in South Kilkenny. The rest could lump it and birth at the side of the road if necessary.

Twice I had to listen to two women die next to me in hospital because there’s no place for people nearing death and their loved ones to go to die and grieve in dignity.

My time in the Mater was dreadful. I was terrified I’d pick up MRSA because it was filthy. I was put on a ward with cardiac patients, mostly men, who because of their ill health were unable aim too well when they went to the toilet. Once when I used the toilet my pajama bottoms soaked up urine up to my ankles. Even though I was still sick and weak I still tried to hover over the toilet so I wouldn’t have to touch it. I wasn’t able to hover and hold up my pajama legs at the same time. I had just given my sister-in-law two sets of pj’s to take home and wash and had nothing to change into. I rinsed them out in the grimey sink and wore them damp until she returned the next day with clean ones.There was excrement stuck to the sides of the toilet for days at a time. Water flooded the shower room, soaked my clean pjs and towel that were on the floor outside the shower and ran out into the hall. After that happened the first time I learned to take a chair in to the shower room to put my stuff on. At least I knew THAT floor got water and soap put on it regularly. The man in the bed next to me, who had suffered a triple bi-pass was served up a greasy fry for tea when he had specifically ordered fish because it was healthier. On the third day he refused to eat it when they wouldn’t give him what he had ordered and went without eating on principle. I was vegetarian and so was served cheese on crackers and cheese sandwiches (fake cheese slices on white bread) for all but two meals. They brought one of the two nicer meals when I was fasting and not allowed to eat it. My suspicion is that the catering has been privatised, although I could be wrong. The staff, apart from one really nasty nurse, were lovely.

Should I blame anyone for my hard luck? I’ve thought about it over the last year and have tried to be reasonable about it. After all, I waited to get Christmas over with before I phoned the hospital for a second time asking to be seen. But today, when I heard that a very nice man who was in the same, if not worse condition, than me when he went to his GP is going to live because he had private health insurance and I’m going to die because I didn’t, I had to bite my tongue. I’m happy he’s going to live. He deserves to live. But so do I. Then I came home and watched that ad which told people to hurry up and get checked out for bowel cancer because it will save their lives, and I fucking lost it.

I’ve finally reached the angry stage, I guess. Who am I angry at? I’ll tell you, Joe. The health service has been in the hands of Fianna Fail and the PD’s for years and all they can think to do is put resources into privatisation. They don’t have the ability to change structures in the public sector that would put more resources toward patient care. But it’s not just the politicians. I’m also angry at every single voter who voted for Fianna Fail and the PDs because they thought they’d get a few more shillings in their pockets but were too greedy and stupid to realise that that money they saved in wage taxes would be made up with stealth taxes. We all knew before the last election what their health policies were and the majority of people ignored this and voted for them anyway. Maybe they thought this would never happen to them. Or maybe because so many have private health insurance they just didn’t care because they were alright, Jack.

I never dreamed I’d get cancer, let alone die from it. But I was wrong. My message to anyone with symptoms of bowel cancer is go to your GP immediately. If you, like me, don’t have health insurance, pester them until they hate you, go to your politicians and beg them to help, go to the media, get a solicitor to threaten to sue the government and the hospital if they don’t get you in soon for a colonoscopy. Otherwise, the people who love you might lose you and you’ll not get to do all the things you planned in life.

I’m writing to you because the way this country is run leads me to believe that contacting a radio show is the only way to try to change things like this. I hope that when Ms SUV and Mr Builder goes into the voting booth, they’ll think about me, my husband and especially my children. My husband is a decent man. He works full time in a good job and I worked part-time in a job I loved that helped people, but didn’t pay well. It depended on government money to help women and children in crisis, so of course couldn’t pay me well. We know what Bertie, Michael, Micheal and Mary’s priorities are.

Despite 1 1/2 incomes we couldn’t afford VHI or Bupa. But even if we could have we wouldn’t have gotten it because we believed (and still do) that all people should get good care despite their incomes. We thought jumping queues was wrong. We’re socialists…just like Bertie. Ha Ha. Now I feel like vomiting and it’s not the chemo!

From a Cancer Patient in Kilkenny.