Better care for all: access to medication

People with COPD or asthma rely on their inhalers to be able to live their lives as well as possible. We know that many people don’t get the right inhalers or are not using their inhalers as they are intended.

One study suggests that 3 in 4 patients are getting it wrong. The risk is that they may be struggling to breathe because they don’t get the full benefit of their inhalers

We want health care professionals caring for patients with lung disease to know what steps to take when an inhaler may be the best option. Regular reviews should be part of the care patients receive to make sure their inhaled medication is being used safely and effectively. Community pharmacists are well placed to help patients with their medication, because they see a total of more than 1.5 million people every day. They do a great job in supporting patients but they want to do more.

Promoting the correct use of inhalers

The UK Inhaler Group (UKIG) is a coalition of not-for-profit organisations and professional societies with a common interest in promoting the correct use of inhaled therapies. Its aim is to optimise use of inhaled treatments by patients with respiratory disease, so that they and the NHS get the greatest possible benefit from their treatments, enabling patients to have the best quality of life.

Its resources include an interactive new website to raise awareness of the importance of accurate inhaler technique with health care professionals.

We want to see greater use of smart inhalers, which collect the information patients and their health care professionals need to monitor their condition. Smart inhalers also remind patients when to take their medication and whether it has been used correctly. Getting smart inhalers to patients who want them should be a priority for the NHS.

We also want the NHS to review medicines available for patients with lung disease. For example, there are effective treatments for pulmonary fibrosis, cystic fibrosis and asthma which are not available on the NHS in England, despite being available to patients in many other countries. Some of these drugs can delay the advance of lung disease. However, the criteria used in England means the drugs are considered too expensive. We want the government and the pharmaceutical industry to work together to overcome these obstacles.

A personal view: helping to improve quality of life

Ron Flewett, 57, has idiopathic pulmonary fibrosis. He was diagnosed in 2014, with a prognosis of living between three and five years if untreated. He says that the side effects from his medication, which include fatigue, loss of appetite and nausea, are severe. But he believes he would not be alive today without it.

 “I came off the drug for six months because of the side effects and during that period I lost 9% of my lung capacity, which is as much as I lost in the previous three years.” Ron, who lives near Lincoln, resumed taking his medication, which he says has changed his life. Aided by oxygen, Ron says he is completing his bucket list. “I get very tired, I’m often in bed by 8pm and don’t get up until 10am. Sometimes after a very busy day I may not surface at all.”

Two antifibrotic drugs are licensed for use in IPF in England. They both slow down the development of scar tissue in the lungs. But neither drug is a cure.  

A personal view: getting access to effective drugs

Gemma Weir’s five-year-old daughter Ivy has cystic fibrosis. In other countries children like Ivy are treated with a new drug

“It is heart-breaking to know that a drug exists that could change Ivy’s life but she can’t have it,” says Gemma, who lives in Portsmouth. “We wouldn’t accept it for other conditions.” Earlier this year Gemma launched a petition for change which quickly gathered 100,000 signatures and a debate in parliament. “The NICE criteria were established 15 years ago. Medicine has changed so much since then.  We must find ways to ensure all patients have access to the drugs they need.”

Gemma says that Ivy’s young lungs are in a good condition but are beginning to show signs that her condition is progressing. “We are angry and frustrated,” says Gemma. “We are doing all we can to support Ivy and keep her healthy. But we can’t do this alone.”

Measures of success

An increase in people living with COPD who use inhaled therapy receiving an annual inhaler check, aiming for 75% within one year and to 90% within five years.

Data need: National Asthma and COPD Audit programmes to replicate, as far as possible, the primary care audit (Wales) in England to collect more accurate data on the proportion of people with COPD receiving an inhaler check, from 2019.

An increase in people living with asthma who use inhaled therapy receiving an annual inhaler check from 76% to 90%, as measured through Asthma + Lung UK’s Annual Asthma Survey.

Prescribing criteria for anti-fibrotic drugs to have changed in NICE guidelines to match European patient eligibility.

Access to cystic fibrosis transmembrane conductance regulator (CFTR) modulators for cystic fibrosis to be in line with European average.

An increase in the number of appropriate severe asthma referrals to specialist centres, as measured and reported by severe asthma MDTs.

Data need: MDTs to publish annual data on appropriate referrals for people with severe asthma with a baseline established within one year.