Switching drugs for cost reasons – the patient experience

In April 2011, the London Specialised Commissioning Group (LSCG), which funds HIV treatment in the capital, issued a new set of messages to clinics on HIV drug prescribing.

The purpose was to save money. The HIV budget had not been raised despite an increase in patient numbers and the LSCG’s aim was to save £8 million in two years that would otherwise have come from measures such as reducing clinic services.

The LSCG negotiated agreements with several companies through which the cost of their drugs would fall if sufficient volumes were purchased (that is, if more people in London were prescribed them). The two most significant deals concerned the dual-NRTI pill Kivexa (abacavir/3TC) and the protease inhibitor (PI) atazanavir (Reyataz). The new prescribing framework stated that people should not be given sub-optimal treatment or suffer serious side-effects.

Most of the increased use of Kivexa would occur by prescribing it to people starting HIV therapy instead of Truvada (tenofovir/FTC) or Atripla (Truvada/efavirenz); few people would have to change from a combination they were already taking. In the case of atazanavir, however, some people would have to be switched from other drugs. It was hoped that these changes would largely be from older and less tolerable PIs.

Although we now have sufficient options in most areas to choose between drugs that are roughly equivalent in effect and tolerability, this was the first time a public funder in a high-income country had openly agreed to change prescribing practice in HIV therapy for reasons of cost rather than medical benefit. Because of this, the LSCG instituted an ongoing programme of audits of clinical outcomes to measure whether patients’ health or experience suffered from the changes.

In addition, the UK Community Advisory Board (UK-CAB), the national network of HIV treatment activists, commissioned its own internet survey, which appeared on various websites, including aidsmap.com and i-base.info.

The findings of the community survey are amongst the first data to come from the London prescribing changes: so far, only one audit of atazanavir use at one clinic has been presented, at the BHIVA conference in April.¹

There were 226 eligible responses; 70% were white, 14% were black African and 78% gay or bisexual. The survey asked people if they had changed any of their anti-HIV drugs since April 2011 and, if so, whether it was their idea or their doctor’s.

In fact, only 77 of the 226 had actually changed their meds – roughly one third. Of these 77, 23 (30%) had asked to change their drugs themselves; the main reason for requesting a change was side-effects (16 cases). In the 54 whose doctor asked them to change, the main reasons were ‘to do with cost savings’ (32 people) or ‘because of new prescribing arrangements’ (18 - many respondents ticked both of these reasons). No more than four respondents in the survey changed their drugs due to virological failure and/or resistance.

Of those asked to change, only 31 (57%) actually did so. Twenty-two individuals did not change and these may largely overlap with the 22 who said they weren’t happy with their doctor’s explanation for the change. Eleven individuals (23%) said they were not given the option to remain on their previous treatment and two said they were not consulted at all; they just turned up at their clinic and found a new prescription waiting for them.

Of 41 people who answered whether their health had been affected by the change, six (15%) said it had got worse, 12 (30%) said it had improved, and 23 said there was no difference.

The biggest specific change was the one you’d expect: 56% more people were on atazanavir after switching treatments than before, and 78% fewer on the older PI Kaletra (lopinavir/r). There were smaller switches towards both Kivexa and darunavir/r (about 25% more) and away from Truvada (17% fewer). Given the small numbers, however, these only represent movements of 10 to 20 patients from and to specific drugs.

Self-selected surveys like this can’t estimate actual changes in the patient population because they only include people motivated enough to answer a survey.

The individual comments are often the most interesting data. Some people were happy to change treatment: “I trust my doctor”; “I was impressed how open they were about the reasons”; “I suggested it myself as a way to save money”; “I support the changes, the NHS needs to save money, but patients should be able to access independent advice”.

But the majority who left comments on changing were, perhaps inevitably, the less-than-happy. Several mentioned feeling ‘pressured’ by their doctor or feeling ‘stress’ about moving on from regimens that were working. “Why break something that doesn’t need fixing?” said one; another said “If I’d not been an articulate gay man I might not have resisted the pressure to change.” Only a couple saw it as a matter of principle not to change, but several said the way it had been handled had led to a breakdown of trust with their doctor.

The most significant finding, however, may be that few patients actually answered the survey, despite pretty wide publicity, and of them, how few had changed.

Michael Marr, UK-CAB Chair, commented: “This survey is encouraging. From over 25,000 people on treatment in London, we found very few examples of problems from the changes. By pressuring the pharma companies to reduce their prices, HIV services in London have saved over £6 million while maintaining some of the best care in the UK.”

More data will be presented at the next UK-CAB meeting and to the LSCG, and will help supplement audit data to be presented at forthcoming BHIVA conferences. The UK-CAB report on the survey is now available online; click here to download the pdf.