A LIFECHANGING drug which was trialled and tested in University Hospital Walsgrave, Coventry, is now available to members of the public as of today (October 28).
People living with Autosomal dominant polycystic kidney disease (ADPKD) will now be able to access Jinarc (tolvaptan) – the first treatment shown to slow progression of the life-threatening condition which affects the kidneys.
ADPKD is an inherited condition that causes small, fluid-filled sacs called cysts to develop in the kidneys.
The condition can cause a wide range of problems including abdominal pain, high blood pressure and kidney stones.
Though children are born with the condition, it is not often noticeable until someone reaches 30 years old.
For many people, kidney failure at a young age can be daunting prospect.
However the introduction of tolvaptan will ensure those living with ADPKD can slow their progression towards kidney failure and reduce the number of symptoms they experience.
Tess Harris, CEO of the PKD charity who raise awareness and funds to help combat the condition, explained how the new drug will – in the long run – save thousands of pounds and provide a better quality of life for those diagnosed.
Ms Harris told The Observer: “This is the first ever drug in the world to treat this condition.
“As chief executive of the charity, our aim has been to fundraise to help support patient education, raise awareness of the condition and give verbal evidence to the public about the problems ADPKD cause.”
Tess continued and stated that to fund someone on a dialysis machine each year costs the NHS £40,000.
Not only will the new drug save money, but it will also make more transplants available to those who suffer from poor kidney function – who will not be eligible to take the drug.
Tess said: “The majority of my family is affected by the condition – my father passed away when he was 57 whilst myself, my brother, sister, niece and nephew are all affected also.
“A new quality of life will be discovered for those eligible to take the drug.”
Kieran McGovern – currently in his 30s – is just one of the 64,000 people affected by the condition in the UK.
After trialling the drug for the past eight years, Kieran revealed that taking tolvaptan has provided him with huge psychological boosts and that he feels as though he can lead a normal life.
Kieran added: “I knew that my Dad had the ADPKD so when I was 21 I decided to go and get checked up to see if I also had the condition.
“The result displayed that I did and it massively affected me – there were various complications that I had to adapt to such as my diet where I was restricted on various protein and dairy items.
“At the time I was living over in Ireland, where my blood pressure was continuously high.
“However since being on the drug I have discovered that it gives you a perk.”
Judith Dignum, chair of trustees at the PKD charity, said: “Up until now if you have been diagnosed with ADPKD you would’ve had no treatment – you’d just have to wait and worry about yourself and your children.
“This drug will help make a massive difference by delaying the progression of the disease, it will allow for extra healthy years.
“There are five stages of a kidney disease – the fifth stage would be when someone requires dialysis, this drug is required when someone would be at the second of third stage of treatment.”