Breathe With Me

Wednesday, 1 May 2019

This post is to raise awareness regarding Cystic Fibrosis, and is in collaboration with a campaigner called Sue, who is a cystic fibrosis campaigner in the UK.

“I’m really shy now” murmured Veronica as the camera equipment was manoeuvred into position.

“Well, you’re the only one here without clothes on, so that’s probably why” came the reply.

Getting naked (or semi-naked) for a music video is something that most of us would find daunting.

However, Veronica Lanzetta had more than just her modesty to overcome when she agreed to be body painted for new music video Breathe With Me. Veronica has fought a lifelong battle with cystic fibrosis (CF) and has the scars to prove it.


Scars from a feeding tube that helped her to maintain weight, scars from chest drains and of course the scar from her double lung transplant at the age of 29 – when CF had ravaged her lungs so much that her last measured lung function was just 16%

But when you have stared death in the face at close quarters as Veronica has, perhaps you view the opportunity to face challenges as a bonus – as Veronica said during the video shoot “I’m here, I’m alive.”

Veronica’s story illustrates how important it is that songs with a message like Breathe With Me are released and reach as wide an audience as possible. Banal lyrics fill our airwaves and we all sing along. The lyrics of Breathe With Me call out to the listener to try putting yourself in the situation of a person for whom the everyday function of breathing, can be a daily struggle.

“The song is about understanding and relating to what others might be going through. In this video I had diseased lungs painted on my back” said Veronica. “The front of me was painted with beautiful roses, to signify new life and hope after my transplant, and also because ’65 roses’ is a symbol that is used often in the CF world. Young children find it difficult to pronounce cystic fibrosis – one little boy called it 65 roses and the phrase stuck.”

Breathe With Me is performed by emerging Indie pop artist Betsa and has been released at a crucial time for the UK cystic fibrosis population, who have been campaigning for access to new precision medicines on the NHS for over three years.

Surrey based Betsa was approached by well-known music producer Simon Ellis, to work with him on the track. Simon who has worked with many major artists, including as Musical Director on tours with Britney Spears and the Spice Girls, has also previously worked with Betsa. When Simon was asked to recommend a singer to perform Breathe With Me, he immediately thought of Betsa’s distinctive vocal style. He approached her and she was delighted to volunteer her services for such a good cause.


“Betsa’s role in the video, as a person who does not have cystic fibrosis, is to act as a conduit between the cystic fibrosis community and the general public” said cystic fibrosis campaigner Sue Barnes who worked on the Breathe With Me project. “We are a small community - cystic fibrosis is classed as a rare disease - and we need all of the support that we can get from the wider public.”

“In the video we see 16-year-old Elizabeth filmed struggling to breathe underwater and Emma (8) blowing bubbles – a visual representation of breath. Both Elizabeth and Emma have cystic fibrosis.

“Emma is literally sending out a message in a bubble (in the way that a castaway who is isolated on a remote island sends out a message in a bottle). In two of the bubbles that she blows in the video you will see a yellow rose. The image used has the words ‘No more CF angels’ attached to it. That is our message to the world. People are dying who could potentially be saved – this is so unfair and so tragic.

“For years there was no effective treatment for cystic fibrosis. The new CF modulator drugs such as Orkambi and Symkevi work at the root cause of the disease, attempting to correct the defect. It is not a cure, but the earlier it is given - before lung damage is caused - the more noticeable the benefits. It is estimated that Orkambi has the potential to add more than 20 years to the life expectancy of a child if treatment is started at the age of six. In those 20 years who knows what other treatment breakthroughs there will be? These drugs are buying time for people living with cystic fibrosis, and giving them more quality of life with less hospitalisations. 

“Everyone who could possibly benefit from these treatments should be given the right to try them, but they are currently not available on the NHS due to cost issues. “

The campaign - for Orkambi in particular - (Orkambi was licensed for use in November 2015) has been a hard slog and mentally exhausting for the cystic fibrosis community.

“We have held protests, launched petitions (one which led to a government debate in March 2018), written letters in our thousands to the Prime Minister, been on many national TV programmes and featured in numerous newspaper articles” said Gemma Weir, whose daughter Ivy (5) has a cameo role in the music video.

“Access to cystic fibrosis precision medicines is even the subject of a current Daily Express ‘Crusade for CF’ campaign. Every time we think we are making progress, the negotiating parties – NHS England, Vertex Pharmaceuticals and NICE (The National Institute for Health and Care Excellence) – go quiet on us. Following a Health and Social Care Committee Inquiry into the availability of Orkambi we have been assured that negotiations are continuing behind closed doors, but we haven’t had an update for weeks.”

“Many families who have been campaigning all of this time, have seriously ill family members. Doing daily physiotherapy, treatments and dealing with regular hospitalisations is stressful already. Knowing that there are drugs licensed for use in this country, but still beyond our reach has taken the mental stress to a new level.”

“But we will never give up – and here is where the public can help us. We have just gained over 100,000 signatures on another petition and are awaiting a date for another government debate. Any member of the public can write to their MP and ask them to attend the next debate on access to cystic fibrosis precision medicines – we are grateful to anyone that is able to help in this way.”

Another way to help the cystic fibrosis cause is to watch and share the Breathe With Me music video, so that more people learn of the situation and will hopefully support the ongoing campaign.

Watch the ‘Breathe With Me’ video at: https://www.youtube.com/watch?v=ZkfwV16JmxY

Download the song in aid of the Cystic Fibrosis Trust:
iTunes: https://itunes.apple.com/…/breathe-with-me-single/1455738688
CD Baby: https://store.cdbaby.com/cd/betsa3
Amazon: https://www.amazon.com/Breathe-Me-Betsa/dp/B07PJVH1SX
Spotify:
https://open.spotify.com/album/1KdBfuVO4LZuKITczpjBMY

The petition for access to CF precision medicines can be signed up until the 16thMay 2019. Petition: https://petition.parliament.uk/petitions/231602

For general information about CF visit: https://www.cysticfibrosis.org.uk/

For more information about Betsa visit https://www.betsamusic.co.uk/


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