A Royal Free Hospital (RFH) patient has become the first person in the UK to be enrolled on to a study aiming to understand how best to treat a rare chronic lung infection.

Nontuberculous mycobacterial (NTM) lung infection and disease are caused by bacteria found in soil and water, which people often encounter while going about their daily lives.  

Although NTM was thought to cause health problems only in people with weak immune systems, the commonest form affects the lung and is seen in people with underlying lung problems such as chronic obstructive pulmonary disease (COPD) or cystic fibrosis. However, it can also occur in people with no apparent pre-existing lung disease.  Unlike tuberculosis (TB), there is no evidence that someone with an NTM infection can pass it on to a healthy person and it’s extremely rare for NTM to be passed between people with existing lung conditions.

Professor Marc Lipman, a respiratory consultant who leads the Royal Free London’s TB and NTM service, said: “We are delighted to be part of this study and to have already recruited our first patient. Symptoms of NTM are similar to those of other lung infections, though generally develop slowly and result in chronic ill health. They include cough and sputum, progressive fatigue, weight loss and breathlessness. Often people will tell you that they have noted an increasing need for antibiotics to treat chest infections, and that these do not properly clear with treatment.  

“Unfortunately, healthcare providers may not think of the condition, and not organise the correct diagnostic tests, including cultures to try and grow NTM. It can often be several years before the diagnosis of NTM disease is made. Even then, current treatments aren’t very effective with a chance of cure of 60-70% following 18 months of standard therapy. Most people with NTM are older and the antibiotics used can be poorly tolerated – meaning that we urgently need new and effective treatments to manage this increasingly common condition.”

Dr James Brown, an RFH respiratory consultant also involved in the study, added: “This new drug trial, called ENCORE, will look at newly diagnosed patients who have never been treated for NTM and who have mild to moderate symptoms. Treatment will be with two antibiotics, which are the best of those currently available taken by mouth, plus another antibiotic - amikacin liposome inhalation suspension (ALIS) treatment - or a placebo. They will have this ALIS or placebo treatment in inhaler form as the drug is held in fat globules designed to reach the lungs more effectively when breathed in.”

Nina Walters, senior clinical respiratory research nurse, said: “We are a regional referral centre and have set up a partnership with two other London NHS trusts to recruit patients over the next year. The global target is 250 and between our partnership we are aiming to significantly contribute to this. We hope this trial will deliver a breakthrough in NTM care.” 

For more information about the trial contact nina.walters@nhs.net

(Pictured from L-R: Dr James Brown, Nina Walters and Professor Marc Lipman)