Saturday, 19 December 2015

Russian roulette. Lives #HealthWatch @sussanley @CatherineKingMP

My sister Jane has cystic fibrosis she battles bravely.On top of that she has a bug that doesn't respond to conventional therapies. The system and her illness have cornered her. Yet instead of rolling over and giving in she fights. She inspires me to do the same. The system of waiting for medicines & remedies for illnesses in Australia is archaic. It doesn't just apply to cystic fibrosis it hurts sick people right across the nation. It is so cumbersome it diffuses pressure on the system's key stakeholders. It gives Health Ministers & governments excuses they shouldn't have.                                                
Medical trials should be funded & scientifically monitored.Our system forces them into homes of caring people looking for solutions the system hasn't got around to.Good health outcomes actually save peoples lives. They offset other treatments that may have been required.On top of this people that had no hope of being productive in their communities due to bad health,can be .What price do you put on that? It shouldn't always be about dollars and cents.Humanity should be a bigger part of the equation.
 Here’s a snapshot of my sister’s story.     “About 7 years I was given a diagnosis of a chronic lung disease called Bronchiectasis and was told there was no cure. It was devastating news for me as I had always lived a healthy, active lifestyle and never smoked. Then to add to that about two years ago after multiple hospital admissions for lung bleeding and infection my medical team gave me a clinical diagnosis of Cystic Fibrosis, a disease usually diagnosed at birth. It has been an uphill battle for me ever sinceand in recent years I have been battling a bug (called Stenotrophomonas) that responds to very few medications, and in my case only one medication. Unfortunately I have developed an allergy to this medication and while it seems to stabilise me, it doesn’t effectively treat the bug. It’s hard to even conceive that in this day and age with all the antibiotics available that I could find  myself in this situation. Rather than give up I am determined to find something that will help me even if it means searching outside the square. About two years ago I heard about a study on pigs with Cystic Fibrosis that were treated with inhaled sodium bicarbonate and the results were very encouraging. The doctor who presented the research seemed very enthusiastic about the potential applications in humans, but his obstacle to getting such a trial off the ground was money. It seemed that pharmaceutical companies were not interested in funding a trial in a product that would not generate money…..good old sodium bicarbonate (or as we know it bicarb soda) The study really resonated with me and I felt compelled to find out more. I contacted researchers in the US who were planning to run human trials. I even registered myself for a trial with the University of Pittsburgh, but my health was not good at the time and I had to suspend my application. With the reality of my situation and there seeming to be no prospects of research of this nature in Australia, I decided to take matters into my own hands and trial the product myself. I chatted with my family and after seeking advice from doctors overseas, who of course couldn’t endorse the use of this product, I decided to give it a go. I am not a risk taker by nature so I didn’t make this decision lightly. I’ve been inhaling sodium bicarbonate in a saline solution for 2 months now and although I cannot prove that my health is stable because of this product I am convinced it is helping me and it needs to be researched further. My dream for the future is that this therapy could be used alongside other therapies currently used to treat Cystic Fibrosis and other respiratory conditions. With no prospect of access to the new lifesaving therapies that cost huge amounts of money in the short term I have been forced to search outside the square. There are other patients facing the same or similar scenarios to me. I worry about young kids in my situation whose future depends on access to lifesaving medications and any other therapies that can improve their quality of life. We need a system that allows timely access to lifesaving medications. Our government and the pharmaceutical companies need to work together to ensure people are not waiting years to access these lifesaving medications. The priority should be lives before profits”.  

A long time ago before corruption of our political system and the authorities that are meant to support its integrity. Things like health weren't optional.People were given the best treatment available.Not based on class or wealth just need. To me as a person humanity must always prevail in decisions.There is a hundred years of history that says we can fund services and live together constructively.There are models of government around the world that work and do so now. We must investigate this post haste. 

Never doubt the love of siblings #HealthWatch please feel free to use the hashtag.

regards Mark Dickenson