Today, World AIDS Day, we remember those who lost their battle against AIDS – the late-stage HIV when the condition remains untreated. Since the beginning of the epidemic, 22 million people (UNAIDS estimate) have died of AIDS-related causes. Late diagnosis, a fear of being tested, a lack of treatment and/or a lack of access to it answer most of the ‘why?’ questions.
But, with the noughties, we have seen HIV changing – not the virus but the movement. People living with HIV have become more visible, the images associated with HIV – skeletons and graves – were part of HIV’s dark history. However, most of the campaigns we see today are, in fact, full of colours and people smiling. More politicians and celebrities keep joining the movement; last year, UK Labour MP Lloyd Russell-Moyle came out as HIV positive in Parliament, Prince Harry has taken an HIV test on Facebook at least once and, most recently, rugby player Gareth Thomas has also come out as living with HIV.
But what brought about the change? Surely, discrimination and stigma are still rife in most countries. Well, yes they are, but the sense of community and commitment to improving each other’s life has proved, once again, that togetherness works. Patients demanded better treatment. They demanded that governments invest in better strategies, both preventative and therapeutic – and it worked.
We have moved from a regimen of six-or-eight tablets a day to one-a-day. Newer drugs have fewer side-effects. Let’s make it clear again: a person living with HIV looks no different to a person who is not living with HIV – remember Gareth Thomas and the MP I mentioned earlier? The way we treat people living with HIV is irrational, unjustified and abhorrent. It is not a bad person’s disease (thank you for this, Blanche). And if you are worried about acquiring HIV, there are new ways how you can protect yourself.
PrEP is a pill which, if taken daily – or on-demand, prevents the acquisition of HIV. It is over 99 per cent effective and from London to New Zealand to San Francisco, the number of new diagnoses has fallen dramatically. These cities have introduced – and campaigned strongly – for the use of PrEP, having recognised that it should be part of any sexual health prevention strategy. We know it works. We have all the science we need to prove its efficacy.
The other significant development in the HIV field in recent years is the U=U movement (Undetectable=Untransmittable). A person living with HIV who is taking ARTs, the medication that suppresses the virus and boosts the immune system, can reach an undetectable level. When the virus is undetectable, it cannot be passed on to another person. Isn’t it ironic how the safest sex you can have is with someone who IS living with HIV and HAS and undetectable viral load? (Life does play these silly tricks on us, doesn’t it?)
Nevertheless, we have to acknowledge that not all countries have the same epidemiology, technologies and drugs available. In Romania and Ukraine, for example, shortages of Anti-Retroviral Therapy (ART – the treatment prescribed for people living with HIV) are common. And such shortages are not unheard of in Malta either. I have been in the field of HIV for the last five years and on numerous occassions patients have told me that they are not being prescribed sufficient medication for three-to-six months because of stock shortage. This means that the individual patient would have to go to the hospital pharmacy to obtain the medication at different – and irregular – intervals.
In Malta, where the number of new HIV cases has doubled since 2009 (ECDC 2019), PrEP is only available from some pharmacies with a prescription. There are no strategies or action plans to make PrEP available on the national formulary, even when we have the second-highest rate of new cases in the EU/EEA region. In 2018 we had 73 new cases of HIV.
Sadly, also, Malta has not as yet adopted the U=U movement, even though several international agencies and communities have endorsed it, including ECDC, WHO and UNAIDS.
In addition, the medication that is still being prescribed in Malta – which needs to be taken six to eight times a day – does not even feature in international guidelines on HIV treatment anymore. The high toxicity level of these drugs is unfavourable to the quality of life of the individual patient, and it defies logic - although not financial rationale in some cases – why any government would risk patients not being adequately treated. The lack of access to the right treatment means that patients will not adhere to the drugs, and will possibly develop a resistance, with the virus then becoming harder to treat. Financially, this implies the possibility of more time off work and longer stays in hospital.
In addition, the medication that is still being prescribed in Malta – which needs to be taken six to eight times a day – does not even feature in international guidelines on HIV treatment anymore. The high toxicity level of these drugs is unfavourable to the quality of life of the individual patient, and it defies logic - although not financial rationale in some cases – why any government would risk patients not being adequately treated. The lack of access to the right treatment means that patients will not adhere to the drugs, and will possibly develop a resistance, with the virus then becoming harder to treat. Financially, this implies the possibility of more time off work and longer stays in the hospital.
Unfortunately, the tender that was published earlier this year for the supply of new medication seems to be stuck. Months on, and we have still not heard anything regarding the negotiation process. We still do not know what drugs will be made available and whether the supplier will be providing combination therapy in a single tablet regimen or in a multi-drug regimen. Multi-drug regimens are unfavourable because of the high pill burden and lack of adherence that comes with them.
There are, however, a lot of people who are trying to make a difference. There are organisations that are branching out in the field and trying to bring about change; you will find their details below. But we need your help. If you are someone who is living with HIV and would like to share your story, or if you have ideas for campaigns or ways of improving the services, please do get in touch. As I have said earlier: ‘Togetherness works’!
Nevertheless, we have to acknowledge that not all countries have the same epidemiology, technologies and drugs available. In Romania and Ukraine, for example, shortages of Anti-Retroviral Therapy (ART – the treatment prescribed for people living with HIV) are common. And such shortages are not unheard of in Malta either. I have been in the field of HIV for the last five years and on numerous occasions, patients have told me that they are not being prescribed sufficient medication for thr
ee-to-six months because of stock shortage. This means that the individual patient would have to go to the hospital pharmacy to obtain the medication at different – and irregular – intervals.
Commentaires