New injectable medication 'astonishingly liberating' for people living with HIV

"The thought of not having to take those pills every day is an astonishingly liberating prospect"

People living with HIV in Wales and England could now be offered the first "long-acting injectable" to keep the virus at bay.

Many people living with HIV can keep the virus at very low levels by taking antiretroviral tablets every day.

But for some, these tablets are a daily reminder of the virus and their visibility can take away people's choice of whether to disclose their HIV status.

The new medication, which has been approved for use in the NHS, offers an alternative to adults who have to take daily antiretroviral drugs.

54-year-old Garry Brough, from Maerdy, Rhondda, has been living with HIV for 30 years.

"Although I don't have any level of internalised stigma or judgement about my HIV, the thought of not having to take those pills every day is an astonishingly liberating prospect," he said.

"That's where it becomes a game-changer for people - suddenly you feel free."

"We've got to a stage where the virus is undetectable in our blood, but it's detectable every day in our lives when we have to take those pills.

"So that's the quantum leap that this represents, it's that shift into a freer life with HIV."

An estimated 13,000 people will be eligible for the injectable treatment in England alone, meaning they no longer need daily treatment but will have two injections every two months.

This means they can reduce the days they receive treatment from 365 to six per year.

The injectable has already been approved for use and is available to people in the United States.

Garry was diagnosed with the virus in 1991 when he was 23. At the time, he was told he had around five years to live.

He had been tested annually for several years prior to his diagnosis because "he felt that it was the right thing to do and knowledge was power."

"It was a shock to get the diagnosis," he continued.

"But, there was a sense that if you were having sexual relationships as a gay man in the eighties, that it was like Russian roulette a little bit. It was a scary thing.

"I didn't have any level of self-judgement other than the frustration that it happened and that I could have let it happen, that I could have made a mistake."

Garry went on to develop AIDS and at the age of 27 was diagnosed with HIV-related cancer and started chemotherapy.

Despite this, he began treatment for HIV on his thirtieth birthday.

"I think there was a part of me that felt it was a grand gesture to having got to 30, despite the prognosis that I wouldn't, and then I started what was effectively a new life at 30 because I really didn't expect the time after that."

He said he found the prospect of survival daunting: "The hardest thing to adjust to was the potential that I was going to live again.

"I felt guilty about it, you know, being given this chance. You hear about survivor's guilt and the mixed feelings that you have about being given a lifeline when so many around you didn't get that.

"It is that challenge of suddenly being confronted with a feature that you don't know what it is - how long it could be, what kind of health you have - because the mental challenge of feeling that it could all be taken away again at a moment's notice was so high."

Garry's treatment began with a complex routine of three different medications.

"One of the medications needed to be taken every eight hours precisely on an empty stomach, the other two medications to be taken with food," he explained.

"That meant that I had to take treatment five times a day, at various intervals throughout the day, with a digital watch alarm.

"It was what was keeping me alive, and it was a complex routine. As well as all of the other complementary therapies, vitamins, minerals, all the supplements that I took that kept me well enough to get that far. So it was lots and lots of pills."

After several years experimenting with different treatments, with some giving him severe side effects, Garry now takes two pills a day to suppress the virus.

While this is manageable for him and his lifestyle, and he is open about his HIV status, for many people daily medication presents challenges.

"For example, somebody who works for an airline is flying here, there and everywhere," he explained.

"There are different time zones, their work schedule may clash with their treatment schedule, and how you manage that kind of timing is really important.

"It's difficult for younger people too, those who are at college, for example. They have to think about how they manage that treatment - whether they take it with breakfast, dinner, some of them still need to be taken with food.

"So the challenge is knowing that you've got to take a treatment somewhere without being seen because you haven't told people you live with HIV."

"I think what this does is shift the potential of living with HIV to just be living.

"We're not quite there in relation to a cure or a vaccine. But what are currently injections every two months, that really is a genuine game-changer.

"It moves it into a kind of strange phase where you don't have to think about HIV on a daily basis. So it's transformative in many ways."

The National Institute for Health and Care Excellence (NICE) said clinical trial results show that the injectable is as effective as oral antiretrovirals at maintaining a low viral load.

"There's a low level of knowledge around HIV and a high level of judgement"

Meindert Boysen, deputy chief executive of NICE, said: "Despite scientific advances, HIV is still incurable, but the virus can be controlled by modern treatment.

"However, for some people, having to take daily multi-tablet regimens can be difficult because of drug-related side effects, toxicity, and other psychosocial issues such as stigma or changes in lifestyle.

"We're pleased therefore to be able to recommend cabotegravir with rilpivirine as a valuable treatment option for people who already have good levels of adherence to daily tablets, but who might prefer an injectable regimen with less frequent dosing."

Jean van Wyk, global medical lead at Viiv, said: "Viiv Healthcare is very proud to bring this to people living with HIV. Fear of disclosure is very real for the majority of people living with HIV.

"That's compounded by the fact that people might have their tablets with them when they travel, or people might find it in their homes when they have visitors.

"So for those people with that fear, this treatment brings a new innovation, a new choice, where they don't have to have tablets daily."

Debbie Laycock, head of policy at Terrence Higgins Trust, described the innovation as "incredible news".

"Pill fatigue is also an issue for some people living with HIV who struggle with the idea of taking antiretroviral drugs every day," she said.

"Long-acting injectable treatment is also a better option for those who have difficulty swallowing medication. Therefore, the institute's approval provides a welcome additional treatment option for people living with HIV across England and Wales."

She added that it is a great step forward in the commitment end new HIV transmissions by 2030.