Another Access Crisis

Izzie is one of Just Treatment’s Patient Leaders. Last year she played her part in ending a long campaign to gain access to a drug called Orkambi. Now in 2020 she writes about another access crisis we’re all facing with the vaccine for COVID-19.

Izzie - Just Treatment Patient Leader

I am part of the extremely vulnerable group, going to the shops and leaving the house could kill me. For the elderly, people with pre-existing health conditions, NHS healthcare workers, key workers, the homeless, prisoners, those living with domestic abusers and other minority groups, COVID19 poses a significantly higher risk.  

I have Cystic Fibrosis, a life threatening, chronic condition. It causes passageways in my lungs and digestive system to become blocked with thick, sticky secretion, over time leading to fatal lung damage. 

The unpredictable nature of my illness means that I could be hit with pancreatitis and left unable to move, or wake up with severe chest pain with no warning. As I've been told it is not safe for me to come to hospital, I will have to manage my illness alone. Leaving me terrified to get ill. I will be staying in isolation as long as it takes until we have a vaccine. 

Only last year I played my part in ending a long fight for access to a life changing Cystic Fibrosis drug, Orkambi. The drug company had put such a high price on it that the NHS simply couldn’t afford it.  

Now in 2020 we face another potential access crisis on a global scale. I have spent years watching people I know die as they cannot get their hands-on lifesaving medication. I am not willing to do it again.  

Ableism is still rife in society, a lot of discussion around coronavirus suggests it is only the ‘sick and elderly’ that will get seriously ill from the virus. Implying that our lives are not as important. However, COVID19 is taking the lives of us all, even those who were once thought to be untouchable by the virus. 

The need for a vaccine against COVID19 is essential, as numbers of those infected continue to rise and the death toll increases. The whole world is on hold.  

Whenever this current lockdown period ends and people are allowed more freedom, it will be the vulnerable left shielding inside, unable to attend reunions with families and friends. The sooner we gain access to a vaccine the sooner we can too. Don’t let us be forgotten. 

Even though we knew we were at risk from a coronavirus pandemic, drug companies failed to invest in promising treatments and vaccines as they didn’t think they’d profit enough from them. This was back in 2016, but unfortunately, they couldn’t get enough interest.  

Now companies see the potential for huge sales they are rushing in, but despite the majority of funding - hundreds of millions of pounds - for coronavirus medicines and vaccines coming from taxpayers, there’s no guarantee they’ll be affordable or accessible to everyone who needs them (Gilead already sought monopoly rights on a potential COVID19 drug, which it then rescinded after a public outcry).

Drug companies will still get monopolies on the medicines that will allow them to set their prices at whatever level they want, unless governments take action. Whilst people are dying, losing loved ones and their livelihoods, big pharma seek to profit on our suffering.

Right now, we need global solidarity and collectivism. Our safety depends on the safety of everyone. Each week we come together to #clapfortheNHS, well now it’s time we fight, to stop putting a strain on the NHS, and demand fair and free access for a vaccine. 

We must make sure everyone who needs this vaccine will be able to get it, at a price that doesn’t bankrupt our NHS or other healthcare systems around the world. Let’s not allow market forces to dictate the value of our lives.