The aim of the patient survey was to learn more about the primary immunodeficiency (PID) community’s views on patient choice of immunoglobulin (IG) products, the influence of price considerations and acceptability and willingness to switch IG products. It was undertaken in response to decisions made by NHS England (NHSE) regarding the commissioning framework introduced in May 2017 for IG products. Immunodeficiency UK had previously set out its concerns regarding this framework, which fundamentally promoted switching patients from one IG product to another based on cost and restricted the number of products made available to PID patients living in England.

The survey targeted people who were receiving immunoglobulin therapy or who cared for someone with a PID and was open for one month from December 2017. It was made available via facebook, Immunodeficiency UK’s newsletter and an emailed member invitation. Immunodeficiency UK would like to thank those who took part.

Survey results

A total of 238 patients and carers took part in the survey. 25% of participants had been asked to switch products by their centre.

Key findings and free-text quotes

  • 94% of respondents indicated that patients should have access to a wide range of IG products so that their treatment can be individualised.
  • 94% of respondents indicated that patient choice was an important aspect of providing IG therapy to patients.

‘Treatment has always been provided on an individual basis and only changed in an effort to improve the patient’s quality of life. It is imperative that this continues’.

‘It should be based on what is compatible rather than how much it costs.’

‘I have excellent treatment. I have been on the same product for 7 yrs & would not be happy to change at all. When you find out you have this condition & need this treatment it’s very frightening & life changing. It take a long time to adjust, you always have concerns about side effects etc. When paitents are using a product that suits them with little side effects, leave them alone to continue.’

‘The system has worked so well for a long time – to make sure that patients can continue to have a make of Ig that suits the individual. Over time costs change so to take a short-term view is unnecessary’.

‘I feel lucky that decisions about method of delivery and immunoglobulin product have involved me and my preferences. Regular, lifelong immunoglobulin therapy is a big part of a person’s life and having it in a way that best fits their life and having a product that they feel comfortable and safe receiving are very important for overall health and well-being’.

‘At the moment I feel confident that my immunologist would only change my product if it was in my best interest.’

  • 94% of respondents indicated their views that patients should NOT be switched from one product to another based on the cost of a particular product at any one time.

It is & should be respected for/as being life saving treatment. PID patients already have so much to cope with, without the huge anxiety of whether their particular treatment is/will continue to be available to them.’

‘Have always been happy to follow advice of the experts at my centre. Would not wish to see this advice constrained by cost or commercial pressures.’

‘A change in therapy products should have to do with patients health requirements and not related to cost of the product. Costs keep changing depending on availability of similar products in the market. What is cheaper today may be more expensive next year’.

‘The immunoglobulin chosen for me was based on allergies and other health issues and I currently have very few side effects during/after treatment. I think the cost of dealing with adverse side effects, whilst perhaps a “hidden” cost could end up costing more and puts vulnerable patients at greater risk of additional health issues.’

‘We are fairly newly diagnosed but would be really upset at the prospect of having to change immunoglobulin products. Our child has enough appointments, medications and complications to deal with and worry about without having to potentially have to go back into hospital to trial something new which could have side effects.’

‘As a PID patient using subcutaneous infusion at home, I am honoured to feel part of a partnership with the hospital, clinical team, GP & immunoglobulin supplier. However, this partnership is founded upon respect for the professionalism of my clinical team, mutual honesty and openness – the prime focus of which is my ongoing health & wellbeing. Whilst I recognise the importance of ongoing product monitoring & cost effectiveness/value for money, I would hope that any decisions made concerning a change to medication would take due consideration of all related issues & the opinions of my clinical team.’

  • 85% of respondents thought that the cost of an IG product should NOT be a driving factor in determining what products are made available to patients.

‘I am entirely happy with the way that my immunoglobulin therapy is provided to me. I was happy to accept the recent change in product because of cost because I was assured that the new product would not adversely affect me in any way. As a patient, I am willing to take the advice of the professionals at my centre because I don’t have sufficient knowledge on this very specialist subject. For me, it is nonsense to say I must be able to exercise patient choice.’

‘This is a blood product which is a different scenario from changing a patient from a branded to a generic but identical product. I am receiving steroids with my IV product to help me cope with side effects and I am very worried about a switch which might leave me feeling very ill every 3 weeks. A wide range of products means that we are protected against one product suddenly being unavailable. The impact on the patient’s health and the cost of changing sub cut patients needs to be factored in as they would all have to be brought into a hospital to be monitored in case of anaphylactic shock. I realise that the NHS is having huge problems because of underfunding. But sick PID patients needing hospitalisation will put an even greater burden on hospitals.’

  • 89% of respondents indicated that newly diagnosed patients should NOT have a more restricted choice of IG products compared to existing patients.

‘I strongly feel that immunoglobulin therapy & the products involved, should be based purely on clinical need & not cost. It is appreciated that cost effectiveness should be sought, where appropriate but me be balanced against ‘best clinical practice for the individual concerned, at the time’ ! it would be very unwise, based on recent experiences & knowledge gained regarding ‘contaminated blood products’ for the NHS to reduce the bandwidth of supply & restrict products based purely on cost effectiveness & not clinical need! It should be expected, that newly diagnosed patients, should have the same opportunities of product availability, based on clinical need, that I am currently receiving!’

  • 56% of respondents would be willing to change IG products if asked by my centre if a cheaper, equally effective product was offered.

‘It would seem logical to link cost of the product to the quality/effectiveness of the product ie a more expensive product is likely to be more effective. If it can be proven that a cheaper alternative, is infact as effective as the more expensive product, then I don’t necessarily have an issue with changing. However given that the medication I currently use is effective and that my last change in medication resulted in two weeks of extreme discomfort, I don’t currently have the time or the wish to risk suffering this again’.

‘To date, I have always been given choices about my treatment. I wouldn’t be strongly opposed to making a change as long as the product efficacy and delivery is acceptable’.

  • 98% of respondents agreed that an immunoglobulin management system should ensure a secure, stable supply of a range of IG products for PID patients.

The results have been circulated to NHS England Immunology and Allergy Clinical Reference Group, NHS England commissioners, UK PIN and the Immunology and Allergy Nursing Group.

Posted June 2018