shakesandstones

How to decide on whether or not to Vaccinate

2021-10-14T15:24:00.007+11:00

When I started writing my blog it was mainly to document my journey through medicine from a patient’s perspective. As it developed it became somewhat of a commentary on medicine from my perspective, trying to keep it sensible, intelligent and thought provoking. Never did I think it would have to become political, yet thanks to COVID19, medicine and politics have never been more intertwined.

Sadly, the reason that it is a political is because our decision makers have decided to play politics rather than make decisions in the best interest of their country. But today, I’m going to talk about vaccines.

To start I want to just clear up exactly what my personal opinion is on vaccines is:-

1. I am pro-vaccine.

2. I am pro COVID19 vaccine.

3. I am anti mandatory vaccination.

So what am I trying to achieve in this blog? Even though I believe everyone that can be vaccinated should be vaccinated I don’t want to try and convince you of that. What I want to do is try to get you to think critically about the information in front of you and available to you and then make an informed opinion. So I won’t be giving you a link to check out or asking you to read a certain article. If you truly want to be informed you have to find the information yourself, not simply what someone gives you. It is also perfectly okay not to inform yourself. Just know that your opinion is uninformed and you should just keep it to yourself.

What should you do to inform yourself? First, it is important to find the primary data sources. If you are listening to someone that said they read on the internet that….. You are at least three degrees separated from the original data. First degree, the journalist interpreting the data (which you’re not sure whether it is the primary research or not), second, your mate reading the article and third, your friend telling you. Three points where the information could be distorted or manipulated.

When it comes to the vaccine the primary data is what the biotech companies publish, so make sure that what you read is also in a reputable journal and it has been peer reviewed. Unfortunately, there is always going to be an element of trust that the company has conducted their research ethically and truthfully but that is why it is important to make sure that the data is extensively peer reviewed.

When you review the data, the hardest thing is to divorce yourself from any preconceived opinions you might have had. You need to try and be as rational and impartial as possible and once you start developing an opinion you need to thoroughly scrutinise it because nobody can objectively and forcefully argue that they are right until they have seriously considered that they might be wrong.

Once that process is finished, you may wish to discuss this with family and friends and provided you can do so in an amicable and cordial manner with people that may disagree with you. If you cannot find anyone to discuss this with you can always go and see your GP. They are more than willing to discuss this with you in a safe and rational environment.

Lastly it is okay to change your mind. Information is changing and being updated all the time and this is normal. As time goes by, more data is added, and this changes what we know. As this natural process happens we have to adapt with our knowledge. If our firm belief based on what we knew is no longer viable given the introduction of new evidence we have to change our mind. This is not a sign of weakness or failure. This is actually a sign of strength. To admit you were wrong and be able to move past it is a sign of great intelligence. And this is why we have to keep scrutinising our beliefs no matter how intrenched and firm our beliefs are.

Next time I’ll be a little more opinionated and take you through my thought process when it came to the COVID19 vaccinations.

Until then, Stay well

The Agency Model

2020-10-19T11:26:00.006+11:00

Even before COVID shone its ugly light on an extremely fragile and broken aged care system I had flagged the “agency model” of staffing in health care a really bad idea. Yet in many areas from nursing to aged care it is the system of choice. In order to explore this topic fully, I’ll start by giving you a short history of my experience with the system, the pros and cons and lastly a few other observations before I give you my summation.

So, where did I first see the agency model in action? Well, agencies specialising in health care have been around as long as I can remember and they are important. They were designed to fill gaps in health care facilities when someone is sick, on holidays or there is an sudden and unexpected gap in the staff roster. But it raised alarm bells for me when I was admitted to a ward in a Sydney hospital 20 years ago for a kidney stone operation and it seemed that all the ward nurses were employed by an agency, not the hospital. Interestingly enough, this was not the case in the operating theatres, only on the wards and I’ll explain why I believe this the case later.

In terms of pros for the agency model, I have already touched on one and that it makes it easy to keep the roster full in a profession where understaffing is not just problematic, but dangerous. The second reason is that it is easy. As any business owner that employs people knows, it is not an easy employing people, there is tax to pay, holiday and sick leave to accrue, superannuation, payroll tax etc… Outsourcing staffing cuts down on your own administrative needs.

Before COVID, I identified two massive reasons why the agency model was a bad idea. First, patient care. This should be the most important thing in the running of any health facility. Sadly it has taken a back seat to administrative streamlining and bureaucratic workload minimisation. Now I don’t want to make the point that agency nurses are worse than other nurses. They aren’t. They are fully qualified and just as competent but they are almost being sent to work with one hand tied behind their back. Over any given reporting period they can be working at multiple centres at irregular hours. Being unfamiliar with the individual procedures at a facility and not knowing anyone else or where anything is means they cannot be as competent as other fulltime staff. This not only decreases patient care standards but can endanger lives.

The second point is nurse and carer welfare. Most nurses and carers would love a full time gig but the truth is when you just start out you have to work with an agency. This can be daunting if you are fresh to the industry with no experience. The hospital won’t put any time into training you because you probably won’t be there next week and they expect you to hit the ground running because they paid for a health care professional, not a trainee. Think about what stress and pressure this puts nurses under and what it does to their mental health. It’s really quite disgusting for what is probably the most vital, skilled and underpaid profession in our society.

However, since COVID another reason has come to light. Infection transmission. In the age care system, which relies heavily on the agency model, COVID ran through aged care facilities like wildfire because infected workers were working at multiple facilities. If they had only been working at one, they would have been able to contain the problem far easier if they could limit it to only one or two facilities. This argument does not stop with COVID either. Any contagion from flu to staff infections could potentially be spread in this manner.

The big question is what do we do about it? The solution is easy. The government needs to install a quota for staff in healthcare. For example, a hospital has to have 90% of its staff as either permanent or fulltime staff. It also needs to go further than that by saying that any department has to a minimum of 70% full time staff at any time so the 10% agency staff do not simply get dumped into the most undesirable department and shift. It would also be advisable to disallow any temp from working in more than 3 facilities over a 30 day period. There would be a lot of backlash against such measure, but the health industry would adapt and patient care would benefit.

Until next time,

Stay well

Face Masks

2020-10-03T15:36:00.003+10:00

Is it a mouth piece?

Is it a chin strap?

No. It's a face mask!

It's really not that hard to wear a face mask. I feel that most people that do not follow the instruction do so out of apathy or laziness. But just in case, here is a really precise 2 minute video by Victorias Chief Health Officer that should clear up any ambiguity.

I know some of you think that being forced to wear a mask is an invasion of civil rights. There are strong arguments for both sides but if that is how you feel, try and think of it differently. Don't think of it as wearing a mask because it is required by law but simply as the right thing to do. A bit like picking up your litter or surrendering your seat on the train for someone elderly. By wearing a mask you protect yourself, protect others and safeguard the community.

Stay well:)

The Dan Andrews Report Card

2020-09-26T14:35:00.000+10:00

Just so you know I’m not going to go easy on him. Dan Andrews (DA) is a politician with a background in marketing. He is a master of spin and manipulation so let’s pull back the veil of misdirection and see what he has really done under in.

First Lockdown

Victoria was the last state to release its lockdown measures and when it did it was the hardest and strictest in the country. The first lockdown was absolutely necessary but other states with less strict measures managed to deal with the problem just as effectively so was the super strict lockdown really necessary? The other point I want to make is why were we the last? For days, Victorians were left in limbo as to what we were going to be able to do and not do. Is it just me or does it feel like DA simply loves the spotlight and enjoyed the fact that everyone waited for him so he could politically grandstand?

Verdict – 3/10

Hotel Quarantine

What a debacle. If you live in Victoria and haven’t heard the news you must be in a coma. What you might not have picked up on is the skill with which DA has masterfully mitigated political damage with well rehearsed rebuttal and spin. The political manoeuvring he has undertaken would have been enough to save Nixon from the Watergate scandal. Sure, he set up an inquiry. But, he kind of had to and it has been his go to answer for all questions regarding hotel quarantine, which is to deflect to the inquiry and avoid giving an answer. And this inquiry has spent weeks investigating why the system failed. An answer we already know and giving DA time for the rage to settle and the criticism to dissipate whilst failing to answer the questions that Victoria want answered. Just for the record, hotel quarantine failed because we had low skilled, low paid and ill-equipped workers with zero chain of accountability being charged with hotel quarantine and the health of Victoria. The questions needing answered are who’s idea was it to use private security, why it was considered the best alternative and who signed off on it?

Verdict 1/10

Testing

I have blogged about this before. Click here if you’re interested. Essentially, when we were in the dawn of the second wave the time for testing blew out to five days. During the first lockdown we had three months to get our testing procedures as accurate and efficient and exhaustive as possible. When it came to testing we should have prepared for the worst where community transmission was rife like we have seen in other countries. We needed to aim for 50 thousand tests a day with a 24 hour turn around. We couldn’t even manage 10 thousand.

Verdict 1/10

Contact Tracing

Just to be clear, this is not a critique of our contact tracing teams that have worked tirelessly and diligently through the pandemic. This is focused on the DA involvement. Firstly, with a five day turn around on tests, the contact tracers are on a hiding to nothing as they are starting five days behind. But, where other states, like NSW, have managed to stay ahead of the curve Victoria has not. Probably because they are under resourced and DA didn’t accept any federal or interstate help until it was too late.

Verdict 2/10

Second Lockdown

After it was clear that it was impossible to contain the second outbreak and there was too much community transmission to control we had to head back to the only measure that has worked for DA, lockdown. If you thought the first lockdown was strict, you ain’t seen nothing yet! No household visits, only groups of two outside of the house, only allowed out for one hour a day, nothing open but the pharmacy and supermarket open, not allowed more than 5 km from home and a curfew of 8pm. We were threatened with police action and fines for noncompliance. In some cases, people were virtually imprisoned in their own home. Victoria was drowning and DA had his foot firmly on our head holding us under water. The lockdown was necessary, but we, the people of Victoria, were made to feel like criminals. Like we were the ones at fault when it wasn’t. We also know that the Victorian chief health officer or the police did not request the curfew. In fact they both said it was unnecessary. So why do we have it DA? The lockdown has worked but at what cost? The economy is on life support and the community morale is at an all time low. It could have been handled better. Way better.

Verdict 3/10

Communication

DA would have you believe that he has fronted up to the media everyday and answered all questions. Well, he has rocked up everyday but has he really answered all questions? You have probably heard him repeatedly say three things. “I take responsibility”, “It is inappropriate for me answer whilst there is an inquiry going on”, and “I am simply focused on defeating the virus”. Textbook political answers to deflect difficult questions and leave them unanswered.

The other thing that has really annoyed me is the timing of his press conferences. He is constantly late and his really big announcements have been constantly vague on the time of his speech. On the 6^th of September he promised to make an announcement about the easing of restrictions. He just didn’t tell us what time. So, we waited all morning for the great and glorious DA to inform us for how much longer he would be suffocating us with restrictions. You know what, I think he loves it. I think he enjoys having all of our attention. I think his only regret is that it is just Victoria waiting for him and not the whole country.

Verdict 2/10

The Inquiry

Well the inquiry wrapped up yesterday and from Dans point of view it couldn’t have worked out better. It bought him time for the rage of the people to soften and he wasn’t implicated and his personal inquisition was decidedly soft. So let’s look at the facts. The Honourable Jennifer Coate AO was appointed as the chair of the inquiry. Was this a politically motivated appointment? I honestly hope not but you can’t be sure. She seemed to go surprisingly easy on DA and after three months we failed to get an answer to the number one question. Who decided on Private Security for hotel quarantine? At the end of the day, DA now has leeway to bury the whole thing, Jenny Mikakos got thrown under the bus and we didn’t learn anything. What a complete waste of time.

If we study what we know there are simply two alternatives. Either DA told the truth or he didn’t. If he did tell the truth and he doesn’t know who greenlighted private security it shows incompetent leadership and he should go. If he lied he has either protected himself or others close to him that have made decisions that have lead to the deaths of almost 800 Victorians. If that happened in the private sector someone would be going to jail. Either way he should go. This inquiry was a sham and did nothing more than serve the political needs of DA.

Verdict 1/10

Other stuff

During the pandemic we have really only had two big pieces of news worth mentioning. First, branch stacking in the Victorian labor party. DA is the head of the VLP and he has had the job for 10 years. There is no way to deflect the blame, it all comes down to you DA, but I guess you are accountable for nothing.

The other piece of news was to silence victims of sexual abuse from speaking out. Yes, you are the victim and your actions in the aftermath are suppressed. Fortunately that legislation was removed but it just goes to show the incompetence of the Victorian government.

Verdict 1/10

Summary

Personally, I think DA is a very smart man and I refuse to believe that he didn’t know exactly what was going on. I think he engaged private security to curry favour with the United Workers Union which was a solid political decision but clearly not in the interests of Victoria or Australia. He has always played a solid political game and some people actually fall for his spin and think he has done a good job. Even if he has successfully defeated the second wave, praising him is like rewarding someone for extinguishing a fire that they started or paying half a billion dollars to NOT build a road (Yes, DA really did that too). As a final word I just want to say, Dan Andrews, you would better serve Victoria if you were on the dole.

Total 14/80

Civil Rights

2020-09-16T16:58:00.004+10:00

What are civil rights? According to Britannica.com, civil rights are “guarantees of equal social opportunities and equal protection under the law, regardless of race, religion, or other personal characteristics.” In a democratic society they include the right to vote, the right to a public education, the right to public facilities and the rule of law. The rule of law is extremely important as it identifies checks and balances in our political system and means that every citizen governed by the law is equal under it, including government, parliament and the judiciary.

Now, how does this relate to COVID 19? Well, if you live in Victoria and you haven’t noticed, we have been in lockdown in some form or another since March. Lockdown has essentially been a massive afront to our freedoms and it is important to debate whether our civil rights have been compromised. Every lockdown measure is a potential infringement so let’s break it down.

· Denial of assembly – Right now, we are not allowed to go to anyone elses house, be in public with more than one other person or congregate in public areas. The right to assembly is to allow for lawful protest and groups to form strategy to challenge political leadership or influence policy in a lawful manner. This may sound a little insightful or aggressive but it happens all the time. The federal opposition is always holding the government to account and it is critical in a free society. Imagine how scary it would be if the opposition was deemed to be unlawful and scrutiny of the government was an offence?

However, we are fighting a pandemic and the virus loves a large group of people coming together which means a suspension (not a cancellation) of gatherings is a sensible approach but we do need to see an end to it.

It is important though to look at this from a compassionate standpoint. Imagine you are elderly, have a variety of health concerns, live in an aged care facility and are completely cut off from your family. The restrictions are there to protect you but would you really care. You would not have many days ahead of you anyway and your quality of life would also be low and to top it all off you would be cut off from your family. On your list of priorities spending time with the ones you love would probably be the number one and this basic civil right is being denied to you. I believe it is perfectly reasonable to postpone political and menial social gatherings, but exceptions have to be made on compassionate grounds. That is where we are really feeling it.

· Border closures and 5km exclusion – As far as the virus goes, this makes a lot of sense. If someone is positive you know that the have not been able to spread it outside a certain area allowing easier contact tracing and containment. However, you can’t really call it freedom if you can’t go outside a certain area. Realistically it is a form of incarceration we afford only to criminals. It is an infringement of rights but probably necessary.

· Face Masks – I find this one a little ironic. People who have demanded people should not be allowed to wear face masks (like a burqa or hijab) are now insisting that we do. Realistically, you can really only demand that if you have the right to not wear a face mask, you also have the right to wear one. The issue is should you be forced to wear one. My view is that if face masks supress the transmission of disease it is a small price to pay.

· Curfew – This one I believe is extremely contentious. Victorians have had to be back inside their homes by 8.00pm. This has also meant that everything that is allowed to stay open (which isn’t much) has had to shut at 7.45pm. Granted, there isn’t much reason for most of us to be out but there is for some.

I know a guy in the public service that has a critically important job. He is a widower with two kids 16 and 10. During the day when his kids are normally at school the 16 year old has had to look after the younger one. Lockdown has meant his support network of family and friends is not available and as a result he has to do everything himself. Normally he would try to get home from work, help the kids with homework etc, cook dinner maintain the household and when his youngest was in bed he’d do the groceries about 9.00pm. Now he has to do the groceries on the way home from work meaning there is little to no time for his kids, he is exhausted and has no support.

What is most unsettling about this is why we even have a curfew? It has come to light that it was not recommended by the chief health officer, nor did the police request it. The premier has been uncompromising and unmoved on this issue and when it comes to the curfew has certainly earned his title of dictator Dan.

· One hour out – Another controversial decision is that Melbournians are only allowed one hour outside every day. Now this is okay if you have a big house with a garden but what if you live in a unit or apartment. You can only get one hour of fresh air a day. You know who else gets one hour of fresh air a day? US death row inmates.

· Denial of basic services – For the most part, essential services like water, power, garbage collection etc. have been maintained but other nonessential services, such as childcare, libraries and community services have been sadly lacking. There was also the case where after some nasty weather, certain suburbs of Melbourne were left without fresh water and power for days. Nothing was done to help the affected people. At the very least, certain restrictions should have been eased so family members could help those in trouble and people could access safe drinking water and cooked food. Every effort also should have been made to get the services back. I cannot believe that in todays Australia while Victoria is in a state of emergency it took four days to fix the problem. Completely unacceptable.

· The right to health and safety – This is the right that the government dangles in our face to justify the lockdown. Don’t get me wrong, it is extremely important but could be debated for centuries. Public health and safety is the reason we have speed limits on our roads or smoking bans in our pubs and restaurants. At the end of the day everyone has a different opinion and who is right is a question that will never be answered. It is really easy to sit at home, be bored and complain about the lockdown but the 26 thousand+ people and the families of the 816 who have passed away due to the disease would probably think very differently.

The big question is what should we do? Whether we agree with the lockdown or not, we all need to follow the rules. We live in a democratic society and any adult has the right to run for office and be involved with the decision making. We also voted for the decision makers so you have to respect their decisions and if you don’t like it, vote them out at the next election. It is critical that everyone is compliant because the worst thing we could possibly do is whatever we want. If everyone did whatever they wanted we would have a massive infection rate, deaths in the thousands and a health care system that would have been pushed past the breaking point and given that the Victorian government has displayed a huge lack of preparedness that would probably be much closer than you think.

I think there is one more thing Dan Andrews could do now. After all, he has claimed responsibility and he is the one that has instituted all the rules that have attacked the very fabric of our freedom and given himself massive powers to do what is necessary by implementing a state of emergency for at least nine months. His nickname “Dictator Dan” is justified and right now we don’t know when his reign is going to end. He needs to confirm that once the crisis is over he will resign as premiere. He has stated that he will not contest the next election, but that is over two years away. If he resigns immediately after the crisis abates it will confirm that his motives are purely to see out the pandemic and not rule over Victoria with an iron fist.

It’s up to you Dictator Dan.

Stay well

Vaccine (Part 3)

2020-09-12T10:28:00.001+10:00

The fact is that no matter what happens a workable vaccine is not going to eradicate COVID from the world it will merely be another weapon in the battle against the disease. What is more important is we don’t become complacent about the disease. As individuals it will still be extremely important to wear a mask, social distance and maintain proper hygiene.

Our leaders will also have a big part to play. Not only will they need to get society moving again it is still really important to that they keep working on other methods to control the disease. They need to make sure that international travellers are not spreading the virus into or out of the country, public areas are cleaned and maintained to a COVID safe level, all public servants (especially health and aged care workers) are afforded every opportunity to work in the safest possible environment, testing and contact tracing is maintained to the highest standards and other medical research opportunities are explored.

I’ll even give you a couple of research avenues that should be explored. First, a treatment that is given to people suffering from COVID to ease their symptoms which would also hopefully decrease the mortality rate. There is anecdotal evidence to show that inhaled corticosteroids reduce the severity of symptoms of COVID-19. These drugs are widely available for treatment of a wide variety of diseases including emphysema and asthma. This is being explored overseas:

https://www.cebm.net/covid-19/inhaled-corticosteroids-a-rapid-review-of-the-evidence-for-treatment-or-prevention-of-covid-19/

We need to explore it here in Australia. I just want to add that so far the evidence is anecdotal based on observations of people who should be badly effected by COVID skirting through the disease relatively unscathed and the most obvious reason is corticosteroids. It does not prove the correlation and proper studies need to be conducted in order to find out if it is ae effective treatment or not.

The second piece of research is something I have touched on before and that is the development of a one hour COVID-19 test and guess what, this is something that we can rush as there is no safety concerns as the test requires nothing more than spitting in a cup and the research is being developed right here in Australia at the Hunter Medical Research Institute. Can you imagine how much more effective our contact tracers would be if we could actively start contact tracing in positive cases after an hour as opposed to the 5 days some people have had to wait?

Don’t get me wrong, a vaccine will be a powerful tool in the arsenal of weapons against COVID but it is just one battle that will be won in a long and protracted war. It is extremely unlikely that a vaccine will eliminate the disease from a country or region completely, let alone have global eradication. Even with highly effective vaccines, eradication of any disease has been extremely difficult. In fact, in human diseases we have only managed it once. Smallpox, and it took almost 200 years from the development of the first vaccine in 1796. Polio is also on the chopping block but a yearly low of 22 wild cases in 2017 to an increase of 125 cases in 2019 shows that the disease is infuriatingly stubborn. We can expect nothing less from COVID-19.

Until next time,

Stay well :)

Vaccines (Part 2)

2020-09-11T10:27:00.004+10:00

In my last post I went through the clinical trial process and why it is a stretch for are pollies to be promising to answer all our prayers, defeat the virus and return our lives to normality with a vaccine. Here I will expand on that.

As they get closer and closer to the releasing a vaccine, you’ll hear two words more and more. They are safety and efficacy. The problem is that those words are not absolutes. In regards to safety, there is not a medical treatment that is 100% safe. Even putting on a band aid could have risk (you might be allergic to the adhesive). Essentially, it comes down risk versus benefit and both these change depending on the ailment being treated. For example, if you’re treating cancer, you would be prepared to endure a much higher risk treatment than if you had a cold. With a vaccine, you are treating a disease that the patient does not have. Therefore you could argue that there is no benefit to the patient so the risk has to be zero. But there is a benefit in preventing the disease if the patient is exposed and the public benefit of herd immunity is massive. Essentially, it is complicated.

The way that our society sees it is that vaccines do need to have very low risk and with a very short development and clinical trial length can that safety be guaranteed? The answer is both yes and no. We can comfortably prove short term safety, but can we guarantee long term safety. For example, the Dengue fever vaccination, where even after exhaustive trials and signing off from the WHO, it was found that vaccinated people were suffering from severe bouts of the disease. Essentially, they had vaccine enhanced disease. You can read more about it here:

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)32525-5/fulltext

It is also important to note that even with the cases of vaccine enhanced disease, the benefits to the community as a whole were extremely high as there was a marked decrease in deaths and hospitalisations. The other thing we have to be very concerned about is the fact that the Oxford vaccine is a live vaccine meaning that vaccine is actually a living virus. Now, we don’t need to stress too much, live vaccines have been used for ages. The first vaccines were live viruses including the smallpox vaccine which used the cowpox virus to give you immunity.

In any case, live vaccines need to be carefully monitored and scrutinised during the trial process as there is a small chance that the vaccine could cause disease. Live vaccines also provide an extra hurdle as people who are immunocompromised are advised against having live vaccines. This includes people with certain diseases (such as HIV), cancer patients, bone marrow transplant recipients, people who take steroids or other immune suppression or modulating drugs and the elderly. That’s a real problem as the people most vulnerable and liable to suffer from serious complications or death from COVID cannot be vaccinated. Yes, they will have to rely on herd immunity and realistically that all relies on at least 90% of the country being vaccinated. Approximately 22 million doses to everyone, including people that don’t want to get vaccinated. See the problem?

And then there’s efficacy. Some vaccines can be amazing. The smallpox vaccine offered life long immunity and was the main reason that smallpox was eradicated from the planet. However, other vaccines can only be partially effective or have a limited lifespan like the flu virus that only lasts six months. We simply don’t know how effective this vaccine is going to be. Even if the phase 3 trials prove efficacy, we will only know that it remains effective for a maximum of six months because that is how long the trial will have been active for.

In my next post, I'll wrap up my thoughts on vaccinations

Until next time,

Stay well:)

Vaccines (Part 1)

2020-09-09T09:50:00.005+10:00

Halleluiah. Praise Dan Andrews. Praise Scott Morrison. Praise Oxford University and the University of Queensland because we are going to have a COVID-19 vaccine by the end of the year and everyone is going to be able to get their lives back to normal. In case you hadn’t noticed, I was being sarcastic.

The rosy, triumphant spin that the politicians give you is a big old pile of bull****. The chances of it all working the way they want it to is a million to one. Stay with me and I’ll tell you why.

The first reason is because it is bloody difficult. Not running a marathon difficult but accomplishing something that has never been done before difficult. Think Hillary or Armstrong not your Sunday afternoon fun runner. Let’s face it, corona viruses have been around as long as humans. Afterall, the common cold is a corona virus and we haven’t found a vaccine for that but the fact that a cold is not much more than an annoyance means that the desire has not outweighed the necessity. SARS and MERS are also corona viruses and we started trying to develop a vaccine for them but luckily, the problems seemed to peter out by themselves. Unfortunately, when they did, so did the necessity for a vaccine.

When it comes to COVID-19, even with an abundance of necessity the task is monumental. I don’t think that our politicians realise that there is an extremely high chance that the first few attempts won’t work. It’s really important that we don’t look at these as failures though. Every attempt is a learning experience and one step further to the result we so desperately need. I have no doubt there will eventually be a safe effective vaccine, just don’t expect it straight away.

Part of developing a vaccine is the trial process. With any drug or treatment there are a number of phases that needed to be completed in order for a new treatment to be approved. First is the pre-clinical work. This normally involves having a hypothesis. This hypothesis needs to be tested which normally happens by benchtop research or during animal models. I’ll use the example of a trial I know quite well, HSCT for Multiple Sclerosis, very similar to my HSCT that was for CIDP. They started with animal models and guess what. The first experiments failed. This was due to the selection criteria and once this was resolved, the experiment succeeded.

After this we can move to phase one, which is where we test a small number of people (Anywhere from 5 to 80) normally one at a time to gage safety. Phase two is a larger cohort and starts to look at the efficacy of the treatment. If both these trials are successful then a phase three trial would be conducted scrutinising both safety and efficacy. If that is successful, we have a new treatment that can be marketed to the people. In the case of HSCT for MS, this process took 20 years.

What worries me is that a process that normally takes years is now taking months and that means cutting corners. When I was a participant it the phase two trial of HSCT for CIDP I had follow up studies every year for five years. There is simply no way to test the safety and efficacy of a treatment over time, other than to test it over time. I understand that it is possible to speed up the clinical trial process by increasing sample size, increasing staff to help with lab work and processing results but all the money and resources in the world cannot speed up time. We’ll effectively be finishing these trials on approved vaccines and if we find any nasty surprises we’ll be in real trouble.

Assuming we do tick all the boxes, we then have to worry about mass producing the thing. If we want to get any vaccine to everyone in the world, we need to make at least 7.5 billion doses. We can’t even get fresh drinking water to that many people. In Australia we will need at least 25 million doses and don’t think that we can administer this easily. We still don’t even have antibiotics available to every Australian community.

We also have to acknowledge that we’re not just baking bread. Developing a vaccine is difficult and upscaling manufacturing to meet demand is even harder, then there are logistical and distribution issues to consider.

Next time I’ll be talking about other issues of vaccines.

Until then,

Stay well

The Judd Effect

2020-09-07T11:59:00.000+10:00

The Judd Effect! What is the Judd Effect? Well, honestly I just made it up, but it is a really important problem that we need to address. Just to inform you Rebecca Judd is an Australian model who is married to arguably one of the greatest AFL stars in the history of the game. Recently, Rebecca Judd got a whole heap of flack.

In a since-deleted video, the radio host, took a swipe at Premier Daniel Andrews while plugging a product for her children from the comfort of her $7.3 million home. If you want to read about it go here:-

https://www.news.com.au/entertainment/celebrity-life/rebecca-judd-slammed-for-tone-deaf-dictator-dan-instagram-comment/news-story/6be27db42f3e89b0aebae7e563fa370d

What she has done is complained about the lockdown and people have whinged about her status and her lifestyle because “she has it easy”.

I want to explore whether the criticism of Rebecca Judd is fair? To start I want to start you off with a story of my own. If you read my blog you will know I have had a variety of medical issues. 2006 was my low point but also the time I started turning it around. One of the reasons I started turning it around was because I stared seeing a psychologist for depression. I almost felt guilty when I explained my medical conditions and one of the reasons for this was because on at least three occasions when I had complained about my condition to friends, people had told me “Stop whinging! Think about all the people worse off than you”.

They were trying to help but they weren’t. I felt guilty and it compounded my depression because I was bottling it up and I wasn’t talking about it. But the psychologist told me I was perfectly valid to feel upset about my medical conditions and other people didn’t matter when it came to how I felt for me, when it came to me.

This was the biggest turning point for me in everything. I had received validation for my own personal feeling. It wasn’t fair and I finally felt justified in saying that. Sure, there were people worse off than me but my feeling was valid, and I had every right to say so. Once that happened, I started asking a different question. What am I going to do about it?

You know what, like Rebecca Judd, I’m lucky that I do have a privileged background but I would have traded it all to be able to run. Be able to walk without a stick for ten years. Be the one to teach my kids how to ride a bike.

The question is, is what Rebecca Judd said so bad? Every Victorian is hurting right now, and yes, some have it worse than others. But is only the hardest hit and most effected Victorian allowed to complain. Absolutely not! You are all well within your right to say “This sucks. I am bitter and resentful and that Dan Andrews is an @#$%* and a dictator and I am suffering because of it.” If you haven’t done it, try it. It is quite therapeutic.

Everyone is feeling it at the moment. Black or white, rich or poor, male or female, gay or straight. Sure, some are worse off than others but in that respect we are all in this together. And give Rebecca Judd some credit. She is playing by the rules and it is essential that everyone does or we will be in this forever. As a last note, please don’t take this as a message to go easy on Dan Andrews. What he has done right is superficial, what he has done wrong requires accountability. Rebecca Judd deserves some credit for calling him out.

Until next time,

Stay well

Opportunity Cost

2020-09-04T17:21:00.000+10:00

Opportunity cost. For those of you who have never studied economics you’re probably wondering what is opportunity cost? And no, it is not some shopping styled reality game show. Wikipedia defines it as “when an option is chosen from alternatives, the opportunity cost is the "cost" incurred by not enjoying the benefit associated with the best alternative choice.” In terms of COVID 19, we have to ask what is the cost of this hard lockdown?

It is a very hard question to answer as trying to predict what would have happened given different choices is like trying to predict the future, and the opportunity cost is far more than just an economic one. I will list a few of the costs but this list is by no means exhaustive and if you feel like I missed something important, let me know in the comments.

The first cost is mental health. Australia, and in particular Victoria, has had a massive cost of lockdown. According to a report released by University of Sydney’s Brain and Mind Centre Australia will have a minimum increase in suicide rate of 13.7% for the next five years. But the problem will go far further than that. We will also see a marked increase of the amount of people who will need to be treated for depression, anxiety and other mental health disorders and still it goes further.

People don’t talk much at the moment and not just because of the restrictions, there is nothing to talk about. Everybody is bored and miserable and there is nothing to look forward to. This will lead to in household conflict, family disfunction and domestic violence and the damage could take a generation to fix.

Secondly is simply just health. Elective surgeries have been postponed indefinitely. This may sound okay, but those elective surgeries aren’t going away and it’s not like the list of people needing surgery is simply going to stagnate. It’s going to get bigger and people are simply going to have to wait longer and the wait isn’t like waiting for uber eats. Many of these people will be in pain or discomfort, having to take medications just to get through the day. It goes further than that too. The longer people wait, the more chance a minor surgery will turn into a major surgery.

People are also delaying seeing the doctor for minor ailments as well which could lead to big problems later. For example, I recently went to the dermatologist because I had a mole I was concerned about (don’t worry, it was nothing) but whilst I was talking to the doctor I asked if she was busy at the moment. The answer was no, not at all. In fact, appointments were down about 30% with people waiting for lockdown to finish. I found this concerning. A mole can go for something easily treatable by a small procedure to something that will kill you in weeks, comfortably less than the lockdown period. I also heard that some important hospital wards, including bone marrow transplant wards, were either closed down or working on diminished capacity.

Third is the sacrifices of life. Right now, forget going on holiday if you live in Victoria. You can’t even go out to the movies, for dinner or even see friends. Personally, I haven’t seen my mother in eight months and that hurts. Even the most introverted and cautious of us have a need for human interaction and an element of curiosity. As humans it is built into our DNA and to deny it is retard our development and our progression through life.

Forth, the economy. For the first time in almost 30 years, Australia is in a recession. Not just any recession, this recession is set to be one of the biggest in history and there is no way to sugar coat it. It is going to hurt and that’s a fact, but how much is the question. The longer we are in lockdown, the bigger the problem is going to be so there is a massive opportunity cost of lockdown. The issue is we know what the cost of the virus is. There is a very real cost in terms of sickness and death. The economic cost is much harder to quantify. The harder our economy is hit, the harder it will be to respond to other issues that may arise in the future. We do not know what these issues will be but I can guarantee you, we will have them. For example, it may impact our ability to respond to future bushfire crises or upscale aged care facilities to allow Australians a higher quality of living during their twilight years. These issues will also cost lives but the number is impossible to quantify.

The economic opportunity cost also highlights by the massive disconnect in our political system. Right now we have six state and two territory governments calling the shots and a federal government paying for it. See the problem? State governments are all about defeating the virus, consequences be damned. On the other side we have a federal government worried about how the hell are we going to pay for it and how we are going to emerge from the backside of this pandemic. No matter what, it is going to take us years to pay it back and no matter what the states do now I guarantee you it is not going to stop the states crying poor and ask the federal government for money in the future. There is an easy answer to this. 100% responsibility and accountability lying with the federal government. It is logical, pragmatic and cost effective. Most importantly it is democratic. Everyone in Australia has voted for the federal government, yet a state like Queensland is making decisions that effect the rest of Australia, yet the rest of Australia didn’t get a say in the Queensland government. Annastacia Palaszczuk, your arrogant, politically narcissistic and self-absorbed behaviour would better serve Australia if you were on the dole. Keeping your borders closed is crippling Australia for your own political gain.

Lastly, I believe that the lockdown is sacrificing our values. It is unaustralian to lock ourselves away and not help. States like Queensland have simply closed their borders as if to say “Bugger off the rest of you, we’re okay and the rest of you can suffer. Oh and whilst we’re at it we’ll steel your grand final and pretend we’re doing you a favour.” Annastacia Palaszczuk, you might say you’re here to help and you’ll do what you can and you feel for Victoria but we’re not buying your political rhetoric.

On a micro scale we have also been forced to sacrifice our values. Last week Victoria was hit with gale force winds. Many suburbs were left without power and water for days, including my in-laws. My in-laws are also old school so they do not have internet or a mobile phone. They were isolated and we could not go and check on them because they were outside of our 5km exclusion zone. We had a choice, do what is right and go and help or obey the rules and let them fend for themselves all alone. The problem was sorted out eventually and I’m not going to tell you how.

I’ll also give you a macro example. California is currently experiencing bush fires and they have asked Australia for help. All the states have been very limited in their response citing COVID19 as the reason. Victoria is not sending anyone. Sure, there is an added danger and complication but is that a reason to sacrifice our values? Are we going to turn our back on helping just because we’re scared of COVID? The firemen we would send would be fit and healthy individuals who would be at a minimal risk of COVID and each of them would know the risks and have the right to say no. But, I guarantee you that they wouldn’t because unlike government that can turn there back on Australian values, individual Australians wouldn’t, it’s simply not in our nature. Sending people to California would also have no impact on our own COVID response and people that went would simply need to quarantine when they got home. To compromise our values is akin to selling our soul to the devil.

Until next time,

Stay well

Border Issues

2020-09-03T20:11:00.002+10:00

Let me start by saying this. In terms of pandemic management, geographical segmentation is a really smart idea. Preventing people from moving from area to area is a really smart idea in controlling the spread. This means that any outbreaks are contained to a specific area and therefore are much easier to control and also keep people outside the area safe.

Australia has done this but we have not done it well. Our primary form of geographical segmentation is the states. In this post I’ll go on to explain why this is a bad idea and potentially even dangerous but first, to give some context, a little history lesson. Why did the states set up the way they did?

Originally, there was one colony, Sydney, and this had jurisdiction over all of Australia which back then was known as New South Wales. Over time, new colonies were set up and given the distance between them and the fact that even any meaningful communication between all of them could take days, each colony was given it’s own jurisdiction. Way back in the 1800’s it was essentially a huge land grab by each colony to control as much land as possible and long and the short of it was the state boundaries were born with each area being responsible for its own governance. In all the research I have done for this I not once found anything that has said that the state borders need to be set up with pandemic management in mind. As a result, it is a really bad idea.

First, the states are too big. I’ll use Victoria for the example. At the start of the second wave, all of Victoria were under the same restriction and the only closed borders were on the borders of Victoria. Melbourne had the outbreak. The fact that Melbournians were aloud to travel to rural Victoria spread the virus around the whole state. If the border had been placed around Melbourne from the start, rural Victoria would have been able to safely go about their business with only minimal restrictions and those close to state borders would have been able to travel to other states too. This would have also allowed us to keep more of the Australian economy open and keep our communication links unincumbered which at this moment would be critical.

Secondly, the borders where they lie have caused an absolute nightmare for many border towns. Essentially, communities such as Albury-Wodonga or Tweed Heads-Coolangatta have been split down the middle cutting people off from family, friends and essential services. These towns sprung into existence on the border because there was a strategic economic advantage to do so but, they have evolved into single communities. Dividing them like we have makes about as much sense as drawing a boundary down the middle of other country towns like Ballarat or Dubbo. The only reason we accept it is because they lie on state borders but the virus doesn’t give a hoot about state borders so neither can we.

Lastly, also in regards to border towns, there are two reasons that the borders are actually unsafe. First, in order for the border towns to be able to function correctly all they allow local traffic. This means that the virus would be allowed to gradually spread up to the border town, the local traffic takes it across and away it goes. Secondly having the borders right through the middle of these towns means there are far more roads to police and far more traffic to monitor. So much so, that the border towns do not have the manpower to manage the border crossings on their own so they have to bring in police from other areas. The busy border then becomes much more than a barrier to the virus, it becomes a genuine potential hazard point and the police bought in from other areas of Australia could be infected and inadvertently end up taking the virus back to their home towns.

There is an answer to this. What we need is a federal response to this crisis, not a state by state response. If this was the case we could make boundaries where they would be most effective for managing the pandemic. After all, the virus does not care about our borders, the only thing it cares about is spreading and existing. It is not discriminatory and it is not sentimental which means we can’t be either.

Until next time,

Stay well :)

We're all in this Together!

2020-09-02T15:47:00.002+10:00

We’re all in this together! We’re all in this together. We’re all in this together? Are we? Being from Victoria I have two ways of thinking about this. First, if I listen to my friends and family both in Victoria and interstate. Everyone has been extremely understanding, compassionate and sympathetic and from that point of view I really feel that we are in this together. This was compounded by a wonderful 30 second filler piece I saw on ABC news that played a string of messages from people all over the country giving beautiful words of encouragement and support. In this respect, I absolutely feel like we are all in this together. It gives me energy in this second lockdown. I feel empowered like I am doing this for the good of the country and the safety of everyone.

Unfortunately, I start to feel very differently when I continue to watch ABC news. Now don’t get me wrong. I don’t blame ABC news. I believe they are the most rational and unbiased news network in the country, but in bringing us the news they also televise all politicians press conferences, press releases, behaviors etc… And this is where it all breaks down. Many of the politicians (not all) have made us feel extremely isolated and alone. Especially being Victorian, I and many of my friends and family feel extremely disconnected from the rest of Australia.

Let me start right at the top. Our Prime Minister Scott Morrison who has said countless times that we are all in this together. And he said it at the start of Victoria’s second lockdown, moments before he went home, picked up his family and went on to enjoy a couple of nice cold beers at the footy. As we are all in this together I know exactly how he felt as I went home picked up my family and went off to the MCG. Accept for the fact that we didn’t go to the MCG, we didn’t watch the football and we didn’t enjoy a couple of beers because we were in lockdown. Now I don’t begrudge my fellow Australians going to the footy when I can’t because management of the pandemic needs to concentrate on the hotspots. Some people have said they don’t begrudge the PM having a bit of time out to watch the footy as he has an extremely difficult job at the moment. I disagree though. It is a difficult job for a variety of reasons. One of the main reasons is to represent the Australian people which includes enjoying the good times but also empathising with the bad times which sometimes means sacrifice. Sacrificing your trip to the footy so you can stand side by side with Victorians in their time of suffering. But I guess you have set a precedent here by sodding off on a Fijian holiday during the bushfire crisis.

Well, it wouldn’t be COVID blog focusing on Australia if I didn’t mention supreme Victorian leader, Dan Andrews. Again, a leader that has used the line “we are all in this together” in abundance. In his defence though, at least he hasn’t been to the footy and from an advertising standpoint the Victorian government has a great slogan “staying apart keeps us together”. He has also fronted up to the media everyday which can’t always be easy, or is it easy for him? It could be argued that he actually likes the attention and the power that comes from having Victoria in a state of emergency. I personally don’t think this is the case but his rhetoric has felt dictatorial. Especially at the start of lockdown the premier kept telling us that we needed to understand how serious the pandemic was. Well, I’d like to ask him if he knew how serious the pandemic was when he trusted hotel quarantine to private security or when cracks in our contact tracing and COVID testing became apparent? Instead we were forced into Victoria’s one and only weapon against COVID, lockdown. And as he did it we were made to feel like it was our fault, that we were to blame and we were the all the ones who had let Victoria down and were the shame of Australia. He also made us very much aware of all the restriction we would face, that they would be enforced by the police and what the punishment would be. Newsflash people, it was not our fault. It was the fault of the Victorian government and even though he has taken responsibility he has not accepted the blame or apologised for it. As a result, the messages from the premier have been mixed which makes us feel alone and that does not make us feel together.

Finally, I’m going to focus on the other state premiers and chief ministers with particular attention on my least favourite politician in the world right now, (and that’s a pretty low bar) Annastacia Palaszczuk. Not only is her name insufferably difficult to spell her demeanour has been smug and arrogant and I for one feel like she thinks she is better than the rest of Australia. She constantly says she has to put Queenslanders first and when you say that you divide the country. In this case Queensland is above the rest of the country with Victoria being left right down the bottom nestle uncomfortably beneath fifty feet of your political garbage. With lines like “Victoria, don’t come here” you’ve made us feel like we come from a diseased, rancid leper colony that deserves the contempt and disdain of the rest of Australia.

I and many other Victorians also take umbrage to your request to host the AFL grand final because Queensland as you put it has done most of the “heavy lifting”. You might call it “heavy lifting”, I call it cashing in on Melbourne’s misfortune. The AFL relocation has been a massive boon for your economy with many teams having to pay to house and maintain their players, staff and family in your state as well as the economic benefits of hosting the games. Could you please use this topic to show a little respect and humility as hosting the AFL is not a burden but a privilege and an economic cash cow in this time of COVID recession.

I have to say that although I have singled out Annastacia Palaszczuk she is not the only one as no premier has an argument for total vindication. However, one of the failing is not just in our political leaders but in our system. How can we possibly all feel like we are all in this together when we have six state and two territory governments, as well as the federal government, splitting up jurisdictions based on region and responsibility. We are 25 million people with 9 different governments. If we were controlled by just one government, regional lockdown would be far easier to deal with and I believe our response would have been far more effective.

Until next time,

Stay well

Hope for the Best, Prepare for the Best?

2020-09-01T17:20:00.000+10:00

In my last post, I gave Daniel Andrews and the Victorian government a scathing rebuke of their handling of hotel quarantine. Honestly, it was justified but I could have forgiven them for that if that was where the mistakes ended. I mean, the NSW government led by Premier Gladys Berejiklian, severely bungled the Ruby Princess cruise ship outbreak but since then I believe their response to the pandemic has been the best in the country as they have managed small outbreaks effectively whilst keeping the economy open. In stark contrast, the Victorian government kept making mistakes which only exacerbated the problem.

In this post I will outline what I believe is the biggest mistake made so far and relates to the heading, “Hope for the Best, Prepare for the Best?” I know, everyone knows the saying is hope for the best but prepare for the worst but that is not what we did. Before we went into the first lockdown Australia got lucky. We knew what was going on in China but we were not sure how it was going to go spreading to other countries. Australia could have easily got stung by this as we have direct flights to and from China and if we had been the first country to get badly hit we would be facing huge repercussions. But, the virus chose Italy and Spain and we had the benefit of going into our first lockdown whilst the problem was relatively small.

And from there we enjoyed what seemed like the governments one and only weapon against COVID 19. Lockdown. For the best part of 3 months we stayed home, binged on Netflix and got fat whilst COVID cases diminished and we awaited freedom. Doing what the Victorian government had instructed. Little did we know, the Victorian government was leading by example and also doing nothing.

The government had three months to prepare for the worst and I actually got to experience first hand how badly they had failed. Back in May, I personally knew two people who had been tested for COVID19. Both results came back negative, within 24 hours. Fast forward a month and Victoria is suddenly faced with the second wave. Testing is ramped up and the government is congratulating itself on how many tests are getting done. There is just one problem. It took far longer than 24 hours to get the results back.

Now, how did I manage to experience this first hand? Well, back in June one of my sons teachers had been tested for COVID19 and that test had come back positive. My son was a close contact. I do not know when the teacher was tested so I do not know how long he had to wait for his results. What I do know is that my sons contact with the teacher happened on a Thursday. We understand the school was informed on a Monday. The school informed us via email that night but we didn’t read the email until Tuesday and we were not informed by the authorities until Wednesday. If the school had not informed us we could have been letting my son interact with society for six whole days whilst being infected. 48 of these hours were since the teacher was confirmed positive.

Anyway, my son seemed remarkably nonplussed which was good but I was frantic. What if he was positive? What if he’s infected others? What if the rest of the family get it? What if… What if… What if… I had hundreds of questions and I had to wait over a day to get answers. I also started trying to contact trace my sons whereabouts. In the four days he had before notification, he had hung out with friends both in and out of school. He had seen his grandparents and aunt and uncle. I had taken him to have his hair cut and taken him for a hot chocolate and we also went to the supermarket. If you think about it, that is only just more than one thing a day and if I remove his school friends from the equation that could be as many as 30 close contacts. Anyway, I cannot say how long the gears were turning before our notification but I do know that the official contact tracing took two days. This is way to long. It needed to be the same day but this is not where the story ends.

As soon as we find out that was son was a close contact we took him to get tested. That happened on the Tuesday. As he was a close contact we were told his result would be prioritised. We got his “priority” results five days later. Five days of worry. Five days of concern. Five days his close contacts could be running around the state unknowingly spreading the virus. Luckily, the test came back negative.

One month later, I developed a sore throat. Normally I’d think nothing of it but given the pandemic and the instructions from the authorities I went and got tested. When I got there they simply told me that the results would take five days. In five days my result came back negative.

My question is during the first lockdown we had three months to prepare. Three months to streamline contact tracing protocols. Three months to ramp up testing so why do our capabilities seem almost exactly the same on day one of the pandemic as they do now? In the absence of a vaccine or any effective medical treatment quick, accurate testing and fast, effective contact tracing should be our first weapon against the virus. Instead it seems to be a strict lockdown that attacks our economy, our freedom and our civil rights that is our only effective measure against COVID19 in Victoria.

You might say though that staying ahead of the contact tracing is too difficult. I’ll grant you, it is hard. Even with 24 hour turnaround on testing contact tracers seem to always be chasing their tail but it is possible. NSW have been effectively managing a small number of cases for weeks without letting it get out of control. If the most populous state with the largest city can do it then why can’t Victoria?

Until next time, stay well :)

Ps. Why does testing even need to be 24 hours? Why can’t we get a test done in an hour or less? How much easier would that make it for contact tracers? As it happens, the Hunter Medical Research Institute are close to just that so why aren’t governments supporting it? I will talk about this more when I give you my thought on the COVID19 vaccine.

COVID19

2020-08-31T18:29:00.000+10:00

Hello fellow readers. It has been years since my last blog and so I feel I owe you an apology but life gets in the way, priorities change and I felt that my material was getting a little stale. But, good news, with weeks upon weeks in lockdown and a COVID pandemic I have lots of new material. This will have a mainly Australian focus with particular attention on Victoria as this is where I live and happens to be the epicentre of the Australian problem.

Currently, I have a series of posts, or chapters, in the works that will take us through all the issues associated with COVID19 and to do this I’ll start back at the point when Victoria entered “the second wave”. Of course, this means talking about hotel quarantine.

The is currently an investigation going on as to what happened in hotel quarantine and whilst this is happening we aren’t going to know exactly what happened until it is completed. However, we do know a few facts:-

• Most, if not all cases of COVID19 in Victoria can be traced back to hotel quarantine.

• Private security agencies were used to monitor and control hotel quarantine.

• Premier Daniel Andrews rejected offers from Prime Minister Scott Morrison to enlist the Australian Defence Force (ADF) for this task.

It is easy to look back with the benefit of hindsight and apportion blame so, to be fair let’s ask three questions. First, was it a reasonable decision to allow private security to monitor hotel quarantine? Second, why was private security used over other options? Third, would it have made a difference?

So, was it reasonable to use private security? Back in February when the seriousness of the pandemic really started to come to light there was very little, if any, community transmission and almost all cases could be linked back to overseas travellers or the Ruby Princess cruise ship. Knowing this, returning travellers should have been of the highest priority for monitoring and control, so was private security up to the task. We know that the answer was no but was it reasonable to have predicted that back in March?

Private security is important in Australia, they provide private business the ability to protect and safeguard their interests in a cost effective manner. But in order for it to be cost effective wages are low and the work is often menial. As a result, most of the workers have only a basic level of education. Also, private security has a large number of part time and casual workers and the recruiting process can be extremely informal. This makes accountability hard to trace, so essentially we had a random workforce of poorly educated not providing security, but being asked to be on the coalface of pandemic management. It was never going to end well, the authorities should have known that and I refuse to believe that Daniel Andrews and the Victorian government followed the best medical advice when making this decision. Medical specialists would have thought about pandemic monitoring needed to be handled by professionals.

Secondly, why did we use private security over other options? Before answering that question let’s ask what the other options for hotel quarantine were. There was the ADF, an option that was rejected by the Premier, the police force, as was used in NSW or Corrective Service, as has been employed in Victoria after the issues of private security were bought to light.

There were other options so why did we not use them instead of private security? I don’t know the answer to this, only the Premier does but I can give you some theories. First, cost, private security is a cheap option but a bad one as the cost of lockdown 2.0 is far greater. Second, every other state refused federal assistance (ADF assistance) for hotel quarantine. The Andrew’s government didn’t want to look like the “weak” state that couldn’t handle it by themselves. Third, the trade unions representing the private security workers saw an opportunity to get people back to work in a time when there was a huge surge in unemployment in the sector due to the forced closure of pubs, clubs and sporting venues. They used their leverage in the Labor Party, who currently hold government to make this happen and the state government buckled to their demands.

Last question, would using a different option to private security make a difference. I’ll compare this to an ADF option as this seemed the most likely alternative at the time. First, I have already alluded to private security having low levels of education and training. This is far less than the ADF. The ADF has qualified doctors and nurses on staff who have training in infection control and even pandemic management. There is a need this because if the ADF is deployed to an area where there is an outbreak of disease, they need to know how to manage it.

Second, ADF staff, even at the most basic level of rank are drilled in discipline and following orders. In complete contrast private security does not. Everyone in Victoria has heard the stories of security staff fraternising with the quarantined and disregarding protocol for infection control. Finally, the ADF has clear structures and lines of accountability that have been tried and tested over decades of conflict and chaotic situations. It has been proven to be flexible in adapting to an almost infinite amount of different situations yet doggedly rigid in maintaining the highest standard. Private security on the other hand is completely different. The inquiry is trying to piece together the structure and lines of accountability which still remain a mystery. One thing we know for sure. It didn’t work.

Until next time,

Stay well :)

So, Why is it so?

2016-05-11T17:39:00.000+10:00

In my last post I stated that here in Australia we like to conduct "redo" not "research". If you didn't read it I suggest you do by clicking this link. The question remains why we do this? In case you are expecting me to give you reasons why it all makes sense that we do it this way, I apologise. These are not reasons that work for the greater good or are in the best interests of patients or the community at large. They either serve a minority or make no sense. I have four reasons:-

First is a reason my friend and reader of my blog, aminfla, alluded to in a comment on my last post. Big pharma. Big pharmaceutical companies like one kind of research and one kind only. The research that leads to them making a profit. The latest and greatest wonder drug that they can pedal to the masses for millions. Don't get me wrong some of these drugs that have been developed over the years have changed the face of modern medicine. But sadly, when research is available that has the potential to do the opposite to their bottom line it is seen as a threat. So they protect their interest by pushing their own research on specific charities that specialise in funding medical research (which is quite successful as they donate quite heavily to these charities) or finding ways to discredit the other research. Is it illegal? I don't know, you'll have to ask a lawyer. Is it unethical? Absolutely. I'm not saying that these companies should fall on their sword and support the other research, but they should certainly not actively try to hinder it.

Politics. Research is about knowledge, expanding our understanding and making new discoveries. Politics should be about the successful running of a country or state but it's not. Politics is about winning. Therefore, whoever is the current government they don't want research, they want wins and unfortunately research involves a lot of failure or from a political perspective, losses. As Thomas Edison said, "I haven't failed, I've just found 10,000 ways that won't work". Politicians don't want to fund the 10,000 ways, they just want the victory, the one and in order to make sure that happens they just fund redo. However, being politicians they do not admit to this. No that would be political suicide. Instead they point to my third reason...

Thalidomide. Most of us have heard of this drug. If you haven't, here is a quick recap. Thalidomide was developed in West Germany for a variety of conditions and was also deemed to be a safe drug in the treatment of morning sickness. It was then marketed in a varieties of other countries without receiving proper scrutiny. Only after that all happened it was realised that the drug caused severe deformities in the unborn babies. Since then strict regimens have been in place for all research done outside Australia. Now, I do understand that this was a horrible tragedy. Many babies died before they even had a chance at life and those that lived had to live with severe disability. BUT, should that mean we have to redo every single piece of overseas research? I don't think so. Firstly, the mistake that was made in West Germany could have been made anywhere. Germany is actually quite strict, rational and regimented about its medical research (disclaimer: I have no idea what it was like back in the 1950's and 60's) and it is somewhat arrogant to think that we as Australians (or any other nation) are incapable of making the same mistake. We are. After all, money hungry pharmaceutical companies that like the idea of fast tracking their chemicals to market reside in every corner of the globe. Lastly, there has to be better ways of safeguarding people against such problems, but more of that later.

Lastly, the medical fraternity. Have you ever been treated by a doctor that displayed some degree of arrogance? There are plenty of them out there and many of them are simply too arrogant to admit they are wrong. Doctors can formulate an opinion based on little evidence and once that has happened it is almost impossible to convince them otherwise. Or maybe they are told that the best solution lies in a different field of medicine and they are 'no longer requires'. Ego kicks in and hey presto! They suddenly don't like the new idea. There are plenty of examples.

Anyway, they are the reasons I have come up with. If you have any more I'd be happy to hear them. Especially if you disagree and believe you have that "all makes sense" reason. I'd love to hear it. Until next time, stay well:)

Damn we're good! Or are we?

2016-05-03T16:04:00.000+10:00

Australia has a very good health system as do the two other countries (USA and UK) that I have been treated in. But are any of them perfect? Absolutely not! In an industry quite as big as health perfection is impossible, especially when there are so many critics, but perfection is a noble goal and even if unattainable it will serve to make a health system as good as it can be.

But for the purposes of this blog I will focus on Australia and to narrow it down a little further, the field of medical research. Now, Australia has an issue. There are far more research projects than dollars which means that either some research simply does not get realised or the projects are scaled back to fit in with there available budget. Neither is ideal and both happen with all too much regularity.

But the question then becomes who decides who gets funding and who doesn't. In Australia this comes down to four main groups:-

Governments - The main source of medical research funding in Australia, both at federal and state level. The main body is the Nation Health and Medical Research Council (NHMRC)
Private donors - Although charitable donations are plentiful, In order to be able to make a choice as to whether a research project happens or not, the donation has to be quite sizeable.
Charities - Certain charities sponsor medical research and collate smaller donations to distribute them into something more meaningful.
Corporate - Will invest heavily in research but only if there is a buck to be made. For example, big pharma.

One important group missing from this list is patients. In other countries patients can fund their own treatment but not in Australia. But this is a post for another time. At the end of the day, the biggest contributor is the government, followed by charities. The other two are also very hard to influence as they are autonomous in their decision making.

The next question is how does this money get allocated? Well, the short answer is badly and I'm going to go back to the example of HSCT on this one. Certain charitable organisations who are allegedly an authority in this area have stated that they are not interested in funding HSCT for multiple sclerosis and autoimmune diseases until stage 3 trials have been completed overseas.

WHAT!!!!!! According to the Oxford English dictionary the definition of research is "The systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions". If you are simply going to follow in the footsteps of someone else work and do exactly what has already been done you are not going to establish facts because these facts have already been established. You are not going to reach new conclusions because these conclusions have already been reached. Essentially this is not research, this is redo.

In the meantime, while we wait for the trials to be conducted overseas and then conduct our own research, sorry redo, which is at least a three to five year wait, Australians are dying and suffering.

In my next post I'll give you some insights into why we do it this way and more importantly, what we can do to make it better. Until then, stay well:)

HSCT and Cystinuria

2016-04-22T13:49:00.000+10:00

For those of you that don't know, I have had two main medical issues throughout my life. CIDP, the problem for which I was successfully treated with HSCT back in 2012 and cystinuria. A disease that means you get lots and lots of kidney stones.

Anyway, a few times I have been asked the question "Did HSCT also work for cystinuria too?" A reasonable question ask but what is the answer?

The short answer is no.

The long answer in no.

Ok, ok that is a little facetious of me so I will elaborate. When I was looking for new treatments for my ailments there were always two voices in my head. First, the cold and logical part of my brain that asks for facts and questions the scientific theory. The second is the voice driven by emotion. A voice that clings to hope and is fuelled by desperation.

The question is, which one to listen to? The answer is both. When I first heard of HSCT I got very excited. I was like a kid in a candy store that had just found the best chocolate bar in the world ever. I then shared this news with my doctors who were much more sceptical. Logic dictated that I should give up now as my doctors knew an awful lot more than I did. But I was right to listen to my emotional side which told me to carry on.

However, I then had to listen to my logical side. Ask myself questions like "What is the medical rationale behind this?" "What have the studies to date proven?" "What has come of the patients before me?" In all three counts the answer was positive so I decided to go ahead and made what was absolutely the right decision.

But what has this to do with cystinuria? The brain was ticking over at the time and I did ask myself "Could this help my cystinuria?" My emotional brain wanted it to but my logical brain new the answer. There was no medical or scientific rationale saying it would work. There was absolutely no reason to think it so no studies had been done and nobody had been before me. But still emotional Andy kept saying "but maybe..." I was going to have the treatment anyway

Unfortunately, logical Andy was right. Since HSCT my CIDP has all but gone but I still have kidney stones. In the last four years I have had six surgeries for stones and I'm sure there will be more to come. So to my fellow cystinurics, unfortunately this is not the answer no matter how much we wish it was but I'd also say don't give up looking. Keep listening to that emotional side that wants to find the answer. There is a better treatment out there, dare I even say cure? And it will take both the logical and emotional voices in our heads to find it.

Stay well:)

Does HSCT work?

2016-04-18T22:31:00.000+10:00

Firstly, to all my dedicated readers. Sorry. It has been way too long since I have posted. I'll try to keep you more up to speed in the future.

But can you believe it has been four years since I had my life changing stem cell transplant in Chicago? And yes! I really mean life changing. If I have one regret it is that I don't have much video of me before my transplant so that I can compare it to now, so for the first part of this post I'll describe what I was like.

When I had my first evaluation with Dr Burt in February 2012 he asked me to stand up out of my chair without using my hands. I did it... Just. I had to shimmy along to the end of the chair so my centre of gravity was as directly above my feet as possible and with one mighty heave I pushed up. Instinctively I tried to use my hands but was reminded not to but after about three seconds I was standing in a vertical position.

This was with no weights or hinderances either and I only just managed to achieve it. Fast forward four years and after HSCT and a bit (ok a lot) of gym work I managed this:-

That is an 85 Kg deadlift and three reps to boot! HSCT works people! HSCT works. Stay well:)

Follow up wrap

2014-08-15T16:17:00.000+10:00

Well it's all done and dusted in Chicago now. A caught up with a couple of people in the ward going through the process at the moment, I had lunch with Brian Hinkle, a fellow CIDP patient who was there for his one year follow up and of course I had my appointments with Dr Allen and Dr Burt. I was there for a week so I also had time to catch up with some old friends, visit some of my favourite places and do a couple of things I wasn't able to do a couple of years ago.

However, although I would have to classify the trip as a success I still feel a little disappointed. Allow me to elaborate. This is my second evaluation. When I had the first one the results were nothing short of spectacular. Although they still demonstrated a "severe neuropathy", the improvement was marked and I felt a great deal better for it.

In this my second evaluation I was hoping that this steep upward curve would continue to climb. I was expecting improvement albeit not as much but alas, there was none. On the plus side, there was no degradation either. But still, I couldn't help but be a little disappointed. The neurological report from the nerve conduction test still said severe neuropathy although I don't feel like it. The improvement plateaued and there it has remained.

It's not all bad though. For the first six months post HSCT I had significant marked improvement. This is something that had never happened before and since then there has been no improvement but most importantly, there has been no deterioration and although nobody can predict the future entirely the general consensus is that the stability will continue.

This actually solves the biggest issue I had prior to HSCT which was the uncertainty. I never knew what the next stage in my disease progression was going to be or when. Now I know what to expect. I can move forward knowing what the future holds.

The outcome has far exceeded what I had hoped and the disappointment is relative to my results at the six month stage. Was it all worth it. You Bet! I'd do it again if I had to but for now I'll simply temper my own expectations and enjoy the improvement I never would have had without HSCT.

Until next time, stay well:)

Back in Chi Town

2014-07-31T22:02:00.002+10:00

Can you believe it has been over two years since my transplant? Neither can I. But I'm back in the Windy city for a follow up and I have to say it is fantastic to be back. Chicago is a fantastic city and I have many fond memories. So far I have caught up with many old friends and seen Dr Burt. I got the feeling he is really excited about how far his research has progressed. He didn't tell me as such but I got the feeling that he is soon going to publish or finish some of his studies and will be announcing to the world some magnificent results. But then again I may be wrong.

In terms of my follow up they were amazed at how well I was doing. They had me fill out a bunch of disability scales and all the scores were either 1 or 0. I had to fill out a pain survey too which I actually couldn't do because it made the assumption I had pain which I don't any more.

On another note I met up with another former CIDP sufferer and HSCT survivor Bryan Hinkle. It was great to meet the guy in person as I had corresponded with him over Facebook but nothing quite beats that face to face interaction. He had his wife Ann and two young children with him too and it is really nice to see the positive impact the treatment has had on not just him but his family too.

As far as enjoying Chicago goes, I have been to millennium park to watch a public viewing of This is Spinal Tap which was really fun until it started pouring with rain. And I mean it poured. They turned the rain all the way up to eleven ;) Today, I must go to American girl with my shopping list or my daughter won't let me back in the country on my return and I thought I might also take a River boat architecture tour as I could not do that two years ago as it was winter. I also have my NCV and EMG today. I'll keep you posted on how that goes.

Stay well:)

Two years

2014-04-10T20:21:00.000+10:00

I am pinching myself. It has now been two years since I was in Chicago having my stem cells infused back into me. Ironically, the day seemed a bit like a non-event. After all the drugs and chemotherapy they put into me over my three week hospital stay the stem cell infusion seemed like just another hospital day.

What is important is the two years since then. My recovery has been better than I ever imagined. For 12 years I was not able to run. Three months after my HSCT I could run again. And the improvements have not stopped there. The best things are I feel like I have become a better husband, father and person. I can play with my kids, I can lift the groceries out of the car and I can walk down stairs without using the handrail.

But even today I noticed something I did that I hadn't been able to do six months ago or for the last 14 years for that fact. Currently I'm holidaying on the Gold Coast with my family and today we were at White Water World. Kids being kids had sprinted to the queue and were (im)patiently waiting by the time I got there. The quickest way for me to get there was to duck under the railing. Six months ago that would have been an effort but as always seems to happen, I ducked under the railing and didn't even realise it until it was over. I then managed to carry up the floaty for my daughter and I by myself!

Anyway the last two years have been two of the best of my life and I'm going to take this opportunity to thank some really special people. First and most importantly my friends and family who have supported me on this journey. It is amazing to see the smiles on their faces when they notice my improvement. A special thanks must go to my wife, my parents and my inlaws. They say that family will always be there for you no matter what and that is so true. To Dr Burt, Amy, Paula and all the other staff at North Western, the care I got was faultless and without your tireless effort I never would have been able to achieve my results. Lastly to my new Reset friends and colleagues who are working tirelessly to see HSCT be available to all Australians suffering from sever autoimmune diseases and promote the treatment worldwide.

Until next time, stay well:)

MS societies - Why so anti HSCT?

2014-03-23T23:45:00.000+11:00

It is a question that has puzzled many HSCT advocates, both inside and outside of the medical and patient community. To those of us that have understood the process and talked to people who have gone through the procedure and benefitted from it can't understand. Myself included.

Now I'm not saying that MS societies all around the world should lay out the red carpet to advocates and aimlessly fund every patient and institution in order to carry out procedures at random. But a distinct lack of support is extremely puzzling. I would at least expect the MS societies to point people in the right direction and fund some of the bonafide research studies that are happening.

And why should the MS societies point people in the right direction? The answer is simple. If a patient decides to ask about the option of HSCT and are rejected for information by what is considered to be the pinnacle patient body on this matter they can take matters into their own hands and might end up being treated by one of the shonky charlatans that sadly are around only to cash in on peoples misfortune. The very least that could be done is for that body to recommend the places that are doing it right.

They should also fund the research. I do believe it is a very long bow to draw to expect anyone to blindly believe a little anecdotal evidence and a few patient stories, especially if they are a professional body. But, anecdotal evidence and a few patient stories cannot be ignored and it is up to these professional bodies to explore and investigate NOT simply dismiss and ignore. The best way to investigate is by finding and funding doctors and facilities that are prepared to run official clinical trials to prove or disprove the treatment. So far these societies have failed to do this. MSA the largest MS charity in Australia has a budget of $33million. Surely they could use a small portion of this to support the trials?

So why have MS societies and organisations been so anti HSCT? I need to put in a few disclaimers here. Firstly, I don't know that all MS organisations are totally anti HSCT. I apologise to any that support the treatment. Secondly, the reasons I am about to list are only theories based on hearsay and (my phrase for the day) anecdotal evidence. One or all of the reasons might be wrong but it still does not change the fact that most MS societies are sadly lacking in their acceptance of HSCT.

Anyway here are my reasons/theories:-

They are getting their advice from the wrong source. Although MS is a disease that has its symptoms manifest in a neurological way, it is a disease rooted in haematology as it is the immune system (which resides in our blood) causing the problem. MS is a disease that has traditionally been treated by neurologists and as a result most MS societies are guided by neurologists. Neurologists simply do not understand HSCT. It's a bit like getting an electrician to do your plumbing. Neurologists are ill informed about HSCT and we need to start listening to haematologists about this.
They are entrenched deep in the pockets of the pharmaceutical companies. Big pharma loves charitable support groups. They are a great way for them to tap directly into the patient market and the association gives them and the drugs they are trying to pedal a high degree of credibility. To ensure their support these cashed up pharmaceutical companies give large charitable donations. Although HSCT does use drugs in quite a high proportion during the procedure these drugs are only used during the procedure and most of them are relatively cheap. Big pharma like patients who need to pop an expensive pill every day for the rest of their life. Currently, MS sufferers are a huge cash cow for them. If an MS charity supports HSCT, big pharma might pull their funding.
MS societies are scared. After all, for many MS and autoimmune patients, HSCT has been the silver bullet that they have been looking for. Now it has not worked for everyone but HSCT is significant enough to make a massive impact on the MS community. Much of what they do would be be made redundant. But isn't that the way it should be? Service the organisation and patients so well you're no longer needed? I mean, if you are contracted to build a house you don't just leave it unfinished so you can keep the job forever. You finish your house and then find a new one to build. If am MS society "cured" MS, I believe that organisation and its staff would be in massive demand for another cause.
Early failures. Yes, HSCT had been tried early without much success. For one reason or another they all failed but as Henry Ford said "Failure is only the opportunity to begin again, only this time more wisely". And some people have. Dr Burt in Chicago started off with rat studies and by the time I saw him had treated over 400 patients. We cannot live in the past. Just as a small sample group with a positive outcome does not prove a successful treatment a small sample group with a negative outcome does not disprove it. Alas, the memory of these failures may have a long memory.

Now the real answer may not lie here but I have faith in people and I believe that the people involved with MS charities sincerely are trying to do the right thing so I'm putting my faith in points 1 and 4. There are ways we can do this. The new organisation I am involved in is called Reset Australia. Our main aim at the moment is to raise the money to fund the stage 3 trials for all autoimmune diseases. If you want to do so you can here:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

Time to get serious!

2014-03-08T09:47:00.000+11:00

I'm lucky. Scratch that, I'm really lucky. With all the people around the world that have a serious autoimmune disease I am one of the very few that have been fortunate enough to be the recipient of a hematopioetic (HSCT) stem cell transplant. Out of all the people in the world that could benefit from this procedure the total number of people who have had it would be less that 1%.

And how does this make me feel? A part of me feels a little guilty about this. I mean, why me? What makes me so special? Why am I so different than anybody else who is in my boat? Others may answer these questions for me and no matter how truthful or well meaning the answer may be I still don't feel any better for it.

But there is a positive. I am extremely passionate about making sure that this procedure is available to everyone that needs it. Now I am not Ban Ki-Moon or any member of the UN security council so to for me, launching a campaign with international appeal would be almost impossible. However, I can focus on the country I know and love and maybe make a difference here and that is Australia.

What is really exciting is myself and a group of other HSCT survivors and concerned members of the community have a plan to accomplish this goal and it is time for me to share it with you. People have already seen snippets of what we are trying to achieve on Facebook and GoFundMe but in order to reach certain media deadlines we needed to push things forward. This post serves as a way to communicate exactly what our plan is.

HSCT is nothing new. It has been used to treat certain cancers and haematological disorders since the 1960's. It is only recently that the move to get it used for autoimmune diseases has started to gain some momentum. However, in Australia we are sadly lacking. The number of cases that we have done here is very little compared to what has happened overseas and that needs to change.

In order to do that the government needs proof that the procedure works before they put it on the medicare schedule. The only way to do that is to get stage three trials done and all the positive media, petitions or even protests at the gates of government house will not change that. The simple fact is that laws have been put in place to protect us and these laws actually make sense to me. I'll give you a couple of reasons why. First, have you ever heard of thalidomide? It was once used to treat morning sickness in pregnant mothers and was widely prescribed without proper vetting by the medical and scientific community. We later discovered that many of the mothers gave birth to physically deformed babies. From that point on regulations were put in place to make sure it would never happen again.

Secondly, ever heard of a guy called Walter Freeman? Walter Freeman was the main supporter of lobotomies in the USA. He performed them on a range of people from children through to the elderly. Although it did come under criticism he went and did it anyway. It wasn't until later that we realised that it was about as stupid as aimlessly sticking pins in your brain (oh yeah, that's exactly what it was). However, it only makes sense that we do what we can to make sure things like this don't happen again.

Given that the government is putting massive checks on new therapies and treatments how does anything really ever get done? Well before government approval can happen safety and efficacy needs to be proven by completing stage 3 trials and Australia has to do the trials or at least be a part of an international effort. The government could help by sponsoring these trials but even if they did it would take ages for the bureaucracy to get that through so if we're going to do the stage three trials we need to fund them ourselves.

So the next question is who will do the stage three trials? Half the work is done. Dr John Moore wants to do the trials, and he just needs the help. The clock is also ticking because for us to get the biggest bang for our buck we need to do this with international cooperation. This way we maximise our research and also help the international community but we need to do it now. The rest of the world isn't going to wait for us so we have got to get into it. The time for talk is over. It is now time for action. Get the stage 3 clinical trials done and HSCT will become widely available.

Given that, we are in the process of setting up an organisation to raise funds and support the trials. This is now my main focus will be on this. But don't worry, I'll keep you posted and forgive me if I keep hounding for money but to do the right thing ain't gonna be cheap so please donate at:-

http://www.gofundme.com/72o5z0

Until next time, stay well:)

Wordle

2014-03-04T00:05:00.000+11:00

In order to find a fun and creative way for my daughter to learn her spelling words they suggest that the kids in her class go on line and put them into Wordle. As this was the first time she'd done it I gave her a hand and found out you can actually wordle a blog.

Yeah, you guessed it, I wordled my blog and this is what I got. I don't know what it means but I think it looks pretty cool. This is what I got

Oh yeah, in case you didn't know we are trying to raise funds for an organisation to support HSCT in Australia. Any donations would be greatly appreciated. Please visit http://www.gofundme.com/72o5z0

Stay well:)

Donations Please

2014-02-26T11:28:00.000+11:00

In 2012 I travelled to Chicago for a hematopioetic stem cell transplant (HSCT) to treat my Chronic Inflammatory Demyelinating polyneuropathy (CIDP). I had to go to Chicago because at the time this treatment was unavailable in Australia. Two years later, this treatment is still unavailable to most people in Australia and it doesn't have to be. For the people that know me you know how remarkable and effective this treatment has been in giving me back my life. If you don't know you can check out my video here:-

CIDP HSCT Story

HSCT is nothing new. There are many haematological disorders and cancers that have been treated by HSCT since the 1960's. For various reasons it has not been used for autoimmune diseases until recently. And yes, I say autoimmune disease not just CIDP because it can be used to treat most serious autoimmune diseases from Crohn's disease to Multiple Sclerosis.

The good news is that it is on the radar. We know that eventually it will be the gold standard treatment for these types of disease but for now we have to focus on proving its effectiveness. As Australians we need to ask the question of whether we want to be one of the leaders in this research or do we want to be dragging our feet ten years behind the rest of the world including Israel, Russia and India.

The work we do here in Australia will also have international benefit. The more centres around the world that are doing trials, the more data we can collect ,the more statistically correct it will be and faster we can have the trials completed.

In order to not be left behind we are looking at setting up a not-for-profit organisation that can be used to raise money, create awareness and lobby the government to support stage three trials which will give us the proof to get this treatment available for all who need it. The first step for us is to finance the startup costs. You can help do this by leaving a donation on the GoFundMe page linked below:-

GoFundMe

Any funds collected over and above the startup costs will go into promoting stage three trials.

Make no mistake, the outcome of these trials will have a significant impact on this country and the world. It has the potential to be the most significant medical advancement since chemotherapy treatments became available in the 1950's.

Please give generously. The thousands of people with severe autoimmune diseases will thank you for it.

Stay well:)