No Future?

So, yesterday was a pretty significant day in the Cystic Fibrosis community. Vertex pharmaceuticals in the USA announced very promising data from their phase three trials of a combination drug that will treat the genetic cause of Cystic Fibrosis directly. The data claims that if and when the drug should become available in the US and EU markets that it *could* offer suitable patients with the double delta DF508 gene mutation anywhere between a 6-10% (or maybe more) increase in their lung function and see a decrease in the amount of time spent in hospital as it seems to also reduce the amount of exacerbations of CF too.


People with the double DF508 gene mutation make up about 50% of the CF community.


What does this mean? Well, it's a bona fide scientific breakthrough as, since now, all medicines and treatments have been tailored towards treating the underlying symptoms of Cystic Fibrosis - this would be the first drug ever to attack the cause directly. The real world implications of this could be staggering indeed, young children born with CF could now take this drug and live a whole and normal life, requiring much less treatments and time in hospital and experiencing much less serious long term damage to their lungs, perhaps for some, none at all.


And yet, I'm not jumping around with happiness... I don't really feel anything about it. Should I?


Undoubtedly this is a major scientific breakthrough the likes of which have never been seen before and I'm glad that many people won't have to go through many of the horrible things that I did growing up. However, part of me feels angry too. There's a lot of people throwing the words 'miracle cure' around right now, people are elated with the news of the breakthrough, which is completely understandable. There's lots of hope and there's lots of optimism that this drug will lead to other drugs and new treatments and that this whole process could potentially be the first baby step towards an eventual cure for Cystic Fibrosis.


I guess, being the super dooper realist that I am I'm just deeply entrenched in cold, hard reality. If the FDA approves the drug in the US it will probably take between 8-12 months to do, then subsequent approval has to be sought in Europe too which will most likely take another year. Then there's the question of whether the already under strain budgets of the NHS can afford to purchase it. There's all kinds of cost quotes flying round right now, some say in the US it will cost anywhere between $160-250,000 dollars per course of treatment for each patient so it is likely to cost a shitload in the UK.


Another issue is one of what about the people who don't have the double DF508 gene mutation? They continue to wait and hope for a similar breakthrough as that's the problem with genetic diseases like CF - any breakthrough in treatments invariably denies another group within the community as it is just that complex to gain any ground on. Irritating bastard that it is.


My anger is for those of us who the drug offers very little for, the older people with CF who have struggled and fought their way into adulthood. Those of us close, or already on the transplant list, and yes, those of us who have already lost the battle.


Time is always against you when you have Cystic Fibrosis, and discoveries like this are too late for many. I can't help being angry about that. I'm not 100% sure if I qualify for this new treatment *should* it become available, my CF unit are busy attempting to categorise people's secondary mutations if they have them so I'm sure they will tell me once they have assessed the information. I'm more concerned that If I am viable then by the time the drug is approved and if the NHS can fund it what state will my health be in by then? 2-3 years is a lifetime away right now, despite me doing really well and busting my balls to stay that way with another transplant assessment coming up.


Don't get me wrong, I'm happy and recognize the massive importance of yesterday's breakthrough. I just wanted to share some thoughts about the harsh reality of how it will affect the CF community as a whole.


*throws gang sign with hands and struts away from laptop*

That Time When I Experienced Disability Discrimination

Hey guys,


So, as some of you Twitter and Facebook followers know, me and H went to the Kings of Leon concert at Sheffield Arena on the 18th June and things didn't go quite to plan. In a nutshell, we arrived at the arena to find that our pre-booked disabled seats had been given to a non-disabled couple who were claiming a 'bad back' after booking sto. After much explaining of my condition and state of health we were then forced to move allll the way around to the other side of the arena despite several further explanations that this would be potentially dangerous for me as my breathing wasn't great.


Still, we were forced to move.


I wrote this letter to the arena manager to complain:

Dear Mr O’ Shea,

I am regrettably writing to you to make a serious complaint about the way in which myself, my carer and partner, H were treated during our attendance at the Motorpoint Arena on Tuesday 18^th June 2014 for the Kings of Leon concert. On arrival at the concert we were greeted by friendly and helpful car park staff which lessened the extortionate blow of being charged £20 for a disabled parking space.   

On entry to the arena, friendly and helpful door staff showed us to the disabled access lift which led us to the level on which we had pre booked our disabled seats many months ago. On arrival at seating bay 116 which hosted our seats we were dismayed to find that our seats had been willingly given to a non-disabled couple. Myself and my partner explained to the Showsec steward that we had booked our tickets months ago and that the couple were wrongly seated in our seats. He apologised and called for a supervisor who turned up and we explained to them both about my disability, Cystic Fibrosis. If you have no knowledge of this disability then please allow me to explain. I was born with Cystic Fibrosis and it is an incredibly serious lifelong terminal lung disease which affects all of my major organs. It constantly fluctuates and I spend a huge amount of time every single day undertaking an invasive and exhaustive treatment regime which also results in frequent long hospital admissions. There is no cure for it and it will not get better. I am now clinically at the end stage of the disease meaning that I am not expected to live longer than the next 2-5 years without requiring a lifesaving double lung transplant that I am currently being annually assessed for. In short, I am dying.              

As a result of being at the end stage of Cystic Fibrosis I now have to wear a heavy portable oxygen backpack wherever I go, 24 hours a day as my lungs are seriously damaged and currently operating at 30% capacity which is equivalent to the air within 4 empty cans of fizzy drink. Once we had explained my health situation to the Showsec supervisor he left to arrange alternative seating and then returned and asked myself and my partner to move to seats on the opposite side of the arena in seating bay 107, directly opposite where our pre booked seats were. We explained again that I would find walking to the other side of the arena very difficult indeed as I had just walked into the arena from the disabled parking spaces which in itself for somebody in my condition is quite a considerable task and dangerous for me. We were still asked to move. The couple who were wrongly seated in our seats claimed that they had booked standard tickets and then as the male had ‘injured his back’ since booking they had been given our seats to sit in. The only solution that the Showsec supervisor offered before moving us was that were we to go and discuss the matter with the customer information staff who I believe were named Carol and Sam.                                                                                                                                        

This is completely unacceptable for a number of reasons. As we had spent the best part of 15 minutes explaining our situation to the Showsec stewards and supervisors, and then were forced to walk around to the other side of the arena which made me very breathless and requiring my medical treatment to be administered by H such as inhalers until my breathing calmed down some 15-20 minutes into the Kings of Leon’s set it incredibly soured and spoiled our first visit to the Motorpoint Arena. The whole thing had gone from being an event that I had paid great expense for and were very much looking forward to for months, to one of stress, disappointment and emotional upset - none of which were our fault. Once Helen had made sure that I was ok and that my breathing had returned to normal she had to leave me to deal with the staff at the customer information point that were initially cocky and frosty in demeanour towards her. Once she rightly explained the whole situation to them they were incredibly apologetic and admitted that the incident was a huge mistake and that it should never have happened in the first place, advising us to write an email which I will do alongside this letter. However, to add insult to the already soured evening, once we had been seated in our replacement seats which as I stated were directly opposite our original ones, I witnessed the male from the couple get up, walk around freely and go to the toilet unaided with my own eyes which made me doubt his ‘bad back’ story.                                                                   

It seems to me that your staff are not correctly trained in how to deal with disabled people, there seems to be a mind-set prevalent that ‘if you’re not in a wheelchair then you’re not disabled’ which is wrong and highly discriminatory in nature. This especially seems to be the case when you consider that we explained my very serious health situation several times over to all parties and not once were we neither offered seats nor was action taken on our behalf which would and should have been to move the couple who were wrongly seated out of our legitimately booked seats. The evening was very distressing for me and my partner and I very much doubt that we will be returning to the Motorpoint Arena in future as it was an experience that was in no way justified when considering my serious health condition and the fact that tickets and parking charges amounted to £141. I expect a better level of service for that amount of money as it is a lot indeed for someone to afford who is too ill to work and reliant on my disability benefits to survive. I also expect to be treated as equally as non-disabled customers are which as you can see me and my partner clearly weren’t. We have been to many different venues and gigs as it is one of the few things that we can do together which help us get through the toughest of times living with a terminal illness and we have visited Leeds Arena, o2 Apollo in Manchester, Bingley Festival and the Leeds o2. They have all been absolutely fantastic at supporting the needs of disabled people, provide friendly and helpful staff and the facilities are second to none. For instance, Bingley Festival offers a dedicated team of ‘Event Buddies’ who will collect drinks from the bar for you to avoid long queues and the Leeds o2 have their disabled seating area upstairs so it is nearer lift access and a quieter bar area. All the aforementioned establishments also offer free tickets for carers to be able to attend gigs and concerts with their disabled friend, family member or loved one too. Those may be areas of improvement that you may wish to review in future along with the extortionate £20 charge for a disabled parking space in the name of equality and fairer access to facilities for the disabled which you are legally required to do under the Disability Discrimination Act 2010. It is a shame that Sheffield’s Motorpoint Arena has not lived up to these high standards too.

I would like an explanation in writing of the above incident.

Regards,

Andrew Ward.


I emailed a copy of this to the customer services, and received this replay some 48 hours later:

Dear Mr Ward

 

Thank you for your email.  I was disappointed to read that you had cause for complaint.

 

We do not charge £20 for a disabled space.  All of our car parking spaces are £5.50 when bought in advance and £6 if bought on the day of the event.

 

I passed your email on to our Head of Security who has investigated and I have since had a report from the Showsec supervisor in the area.  It is true that we had relocated 2 people to the seating bay in which you were allocated 2 spaces.  This was a mistake by a member of our box office staff and may I take this opportunity to apologise on their behalf.  However, the Security Supervisor offered to move these 2 people to another bay, but says that you said you would go to the other bay instead.

 

We have to take people at face value.  If they say they have injured their back and ask if we can help them, then if it is possible we will help them.  On this occasion they should have been located in a different seating bay, but there were spaces available for anyone who had been injured since they purchased their seats.

 

It is incorrect to say that our staff are not trained to deal with the disabled.  They are trained in all aspects of customer service, including dealing with disabilities of all kinds, and not just wheelchair users.

 

Regarding seats for carers, prices for our shows are set by the show’s promoter, and the vast majority do not give free seats for carers.

 

I am sorry that you were disappointed with your evening at the arena.

 

Yours sincerely

 

Joe Waldron

As you can all see, their response was dismissive of my genuine complaint and eloquent explanation, and it comes across a tad arrogant and completely insincere. It's obvious that we have a 'you said/they said' situation now between myself and the arena staff and I expect that this is where they think the matter will end. They're wrong.

My grievance is as simple as this, pre-booked disabled tickets should not be given away to anybody else, no matter what the circumstances, and especially not when over £100 had been spent on them. It's disgusting enough that disabled people are charged more than the able bodied in the first place for access to cultural events such as this so why should we stand for that access to be denied because somebody claims that they have a 'bad back'.

I think my next course of action will be to take the matter to the higher ups at Live Nation - the promoters and if I get a similar response to this then I will have to contact the papers because, remember fellow disableds, nobody gives a shit about you if you're not wheelchair bound. I mean, that's the gist of what this disagreement is, am I right?

Let me know your thoughts, or possible advice for solutions below.

Cheers,

Andy.

Guest Blog on Josie's Journal

Hey all, so I was asked to write a guest blog by fellow CFer and all round lovely person Josie as part of CF Awareness Month in May. In the UK we normally have CF Week every year, but this year The CF Trust has chosen to promote a year long 'No Party' campaign as they turn 50 and don't really want to celebrate being that CF is still wiping us all out. I know, it's a different kind of campaign but I suppose it is their choice on how to focus their efforts.






ANYWAYS, as a result of this many UK CFers are hijacking the yanks CF Month that runs all throughout May in the good ol' US of A to do their bit and fight the good fight and so on.




So yeah, Josie asked if I'd write something for her so here's the link pretty much. Let me know what you think and check her blog out too: Josie's Journal
















Thanks,


Andy.