Yesterday, the Lancet published a study titled ‘Survival of HIV-positive patients starting antiretroviral therapy between 1996 and 2013: a collaborative analysis of cohort studies’. This study found that ‘even in the late ART era, survival during the first three years of ART continues to improve.’ In fact, the authors found that ‘between 1996 and 2010, life expectancy in 20-year-old patients starting ART increased by about nine years in women and ten years in men.’ The authors concluded that this change is likely due to ‘transition to less toxic antiretroviral drugs, improved adherence, prophylactic measures, and management of comorbidity.’ This would explain why the study found lower rates of all-cause mortality in patients who started treatment in 2009-10 compared to those who began treatment in 2000-03.
In other words, our ability to treat and manage HIV has improved greatly, and continues to improve. HIV medications are not only more effective, they are safer and more tolerable with fewer side-effects.
This is a good news story, which needs to be shared far and wide, but it is not the complete picture.
Let’s start with the good news part of the story first. The BBC reported today that young people diagnosed today, who can benefit from today’s improved drugs, can expect a near normal lifespan. This is consistent with the message that I share as a regular part of my trainings in HIV – that, for individuals who are lucky enough to benefit from a national health care programme such as the NHS in the UK, HIV has become a chronic, manageable disease – a disease that can be managed with as few as a one pill a day. Individuals who are diagnosed today and are adherent to treatment can expect a near normal lifespan – or even a longer life expectancy.
In fact, in certain parts of Scotland, men who are newly diagnosed with HIV are told that they can expect a longer life than if they were HIV negative. Why? Men in the West of Scotland are notorious for avoiding the doctor. An HIV diagnosis will mean regular visits to a specialist – and those regular visits to the doctor will likely can catch any other illnesses or problems early, before they advance. For example, my colleague, Scott Agnew reported in the Daily Record, “It’s certainly not a death sentence – my consultant actually said that I’ve probably increased my life expectancy because men in the West of Scotland don’t see their doctors enough and now I’ll be tested regularly because of this!”
This information is important for people to know. Why?
It reduces stigma and fear around HIV. Some people argue that some stigma is a good thing, that it makes people more cautious. That if we don’t have fear around HIV, people won’t bother to protect themselves. While HIV education always aims to walk the line between reducing stigma and encouraging safer sex and prevention methods, stigma remains the biggest barrier to the health and wellbeing of people living with HIV, and it remains our biggest hurdle when it comes to prevention. Stigma interferes with health promotion by preventing people from getting tested, accessing treatment, disclosing their HIV status, having open and honest conversations, and talking about HIV and safer sex. The more we reduce fear and stigma around HIV, the better.
- Some people still don’t believe that HIV treatment is necessary. Unbelievably, I still encounter people who try to tell me that their friend who is HIV positive is not on treatment and is doing just fine. There is a lot of mistrust around pharmaceuticals and the pharmaceutical industry (I suppose with good reason) and a lot of myths that have lingered from the early days. These myths include ideas like treatment holidays are still a good idea, treatment is ineffective, side-effects can’t be managed, and the drugs are toxic. All untrue. And unless your aforementioned friend is a very rare individual who naturally controls the virus, what’s actually happening inside the body is that the virus is multiplying and is killing the CD4 cells. It can take years – tens of years, or even longer – before the disease becomes symptomatic. Some people believe that the disease is latent or is in remission. Not true. The virus is harming the body in ways that just aren’t necessarily visible yet.
- Practitioners need to know that the guidelines around when to prescribe HIV treatment has changed. This is no longer dependent upon CD4 count. The START study changed that, by illustrating that people who delayed treatment were more at risk for illnesses. We need to widely share the news that the sooner people get tested and treated, (provided that they are ready to begin and adhere to treatment) the better.
However, this good news story is not the end of the story.
In fact, the closer we look at these findings, the more we notice that who is left out. Here are a few examples.
For starters, the near-normal prognosis applies to individuals who are diagnosed early. But 45% of diagnoses in Scotland are made late. In fact, 45% is the average across all diagnoses, but for some populations - primarily heterosexual people, injection drug users, Black African men & women and older adults - the percentage of diagnoses made late is considerably higher. Late diagnosis, defined in Scotland as when the CD4 count has dipped below 350, means that the virus has already caused damage to the body and put that individual at risk (Health Protection Scotland, 2016). It’s not to say that even people who are diagnosed late cannot benefit from treatment or expect good health moving forward, but it does complicate the prognosis.
In Scotland last year, 11 individuals who had been diagnosed with AIDS who were attending for monitoring died (Health Protection Scotland, 2017). While not all of them necessarily died due to AIDS-related illnesses, it is likely that some of these deaths were in fact directly related to AIDS-related illnesses or Opportunistic Infections that developed due to late diagnosis. In a poster presentation titled, ‘Is it acceptable to ignore national HIV testing guidelines,’ delivered by Cevik, , M., Raha D., Mutch C., Leen C., 2016 at the HIV Drug Therapy conference (Glasgow, 2016), some important data was presented:
25% of newly diagnosed individuals in 2015 in UK had a CD4 cell count of less than 200.
24% of deaths occurring amongst HIV-positive adults in the UK were directly attributable to the diagnosis of HIV being made too late for effective treatment.
This statistic is staggering! It reminds us that life expectancy can be quite dependent upon when a diagnosis is made.
Smoking seriously affects the life expectancy of people with HIV. Sure, you might be thinking, but smoking decreases the life expectancy of anyone, regardless of their sero-status. But smoking affects the health of HIV positive people more than negative people. Smoking increases the risk of all-cause mortality, drastically increases the risk of heart attack, and increases the risk of smoking-related cancer. In fact, the bodypro.com reported that:
Analysis of almost 5500 SMART trial participants determined that current HIV-positive smokers had a higher risk of five outcomes than former smokers with HIV: all-cause mortality, AIDS-related disease, major cardiovascular disease, non-AIDS cancer, and bacterial pneumonia.
PositiveLite.com has reported on this a couple of times in the past, here and here. In the latter article, Dr. Rochelle Walensky reported:
‘Smoking has the potential to shorten the life of a person taking HIV treatment by an average of six years, and is far more harmful to the life expectancy of people living with HIV than well-managed HIV infection itself, a US study reports this month in the Journal of Infectious Diseases.’
For that matter, the risk of pregnancy loss is much greater among HIV positive smokers than HIV negative smokers.)
The bottom line is, when we talk about life expectancy of people with HIV, we make assumptions and omissions about certain characteristics that can drastically affect health outcomes, and smoking is one of them. Yet, a disproportionate number of people living with HIV smoke. (In my opinion if there is one area where HIV organisations should put more emphasis on, it’s support for smoking cessation.)
In most studies that estimate life expectancy such as the study published yesterday and this one from 2015, the models are based on individuals starting treatment at either age 20 or age 35. Irrespective of the issues around treatment, age can also affect how the disease progresses. For example, in a study called ‘Cognitive impairment in patients with AIDS – prevalence and severity’ by Crystal C Watkins and Glenn J Treisman (HIV AIDS (Auckl). 2015; 7: 35–47.) the authors reported that:
‘Age is a known factor in the progression of HIV seropositivity, with a decreased incubation period from exposure to development of AIDS symptoms, decreased proliferation of T-lymphocytes, and significant risk of HAND.
"HIV life expectancy does not mean HIV cause mortality. Rather life expectancy is a marker of all cause social determinants of health and medical cause mortality risk across the lifespan-including HIV."
While treatment benefits everyone, and most certainly is the most important factor in extending life expectancy, it seems less certain that we can extract the ‘near normal life expectancy’ or ‘better life expectancy’ to individuals who are diagnosed later in life. And this is an important point because infections and diagnoses are climbing in the over 50s. According to Public Health England, 37% of new HIV infections in 2014 among heterosexual people in the UK were aged 45 or older and HIV diagnoses in people over 50 have almost doubled in the last decade. And as Michael Brady (Medical Director at Terrence Higgins Trust) reported in today’s BBC article, people aged over 50 now represent one in three of all those living with HIV.
Social determinants of health
I’ve left the most important point for last.
One of the articles that made me think more deeply about this topic was this article posted on PositiveLite.com by CATIE, titled ‘High rates of injury found among some HIV-positive people in B.C.’
I don’t think this article received the attention it should have. It really made me think more about who is more or less at risk when it comes not just to injury, but life expectancy.
The authors included this statement in one of the opening paragraphs:
“Due to the tremendous life-saving effects of ART, researchers increasingly expect that a young adult who is infected today and who initiates treatment shortly thereafter, and who does not have any pre-existing health issues, and who is engaged in his or her care and treatment over the long-term is likely to have a near-normal life expectancy.”
Consider the criteria in that statement! Those are 6 variables required to qualify for the ‘near normal life expectancy’ prognosis. Only a particular subset of individuals will qualify.
Furthermore, this study revealed factors that can increase risk of injury among people with HIV compared to HIV negative individuals. For example, they found that people who are Indigenous, live in rural areas, inject street drugs, or have mental health conditions – in particular, depression – are more likely to experience injury.
Likewise, the social determinants of health can directly impact on life expectancy. At AIDS 2016, in Durban, Robert Reinhard (Community Liaison, Canadian HIV Cure Enterprise (CanCURE) & NIH MDC BELIEVE Cure Collaboratory) delivered a presentation called ‘Gaps and Community Engagement.’ (The slides from this presentation can be found at the AIDS 2016 website.) In it, the presenter referred to a graph, originally published here in the Lancet which shows that when we look at life expectancy among HIV positive individuals on treatment in different countries, we see different outcomes. Think about this – the life expectancy of people with HIV differs from country to country, even if they have access to treatment and begin treatment at the same time. This means that there are different factors outside of treatment that can cause life expectancy to vary considerably.
The presenter’s notes include the following:
‘HIV life expectancy does not mean HIV cause mortality. Rather life expectancy is a marker of all cause social determinants of health and medical cause mortality risk across the lifespan-including HIV: economics, IDU, co-infection, health system, adherence, stigma, ART initiation, late diagnosis, ethnicity, genomics, pathogenesis, trauma, accident- It’s a picture not only of how long you lived but also a picture that (behind the slopes) shows a symbol of how you lived all those years that you were alive and compared to people without HIV or who live somewhere else.’
Again, it is a reminder that people with HIV are multi-faceted individuals and that life expectancy can vary according to these variables.
However, what I think is really important about this is that the factors that can put someone at risk for HIV can also affect their life expectancy. Addiction, mental health concerns, poverty, insecure residency status, housing instability, food insecurity and social inequality of different types, can all put someone at risk for HIV in the first place, by making them more vulnerable in a number of different ways. But these features also put someone at greater risk of being unable to manage their HIV – such as adhering to medication. They also can affect life expectancy all on their own. In other words, people who are affected by HIV may already have risk factors that, depending on the individual, can put them more at risk for a shorter life.
What this means and what do we do with this information?
These complexities should not negate the importance of treatment. Treatment – regardless of when a person is diagnosed – is the most important factor when it comes to life expectancy and good health. However, I think we cannot ignore the variables that can still put people more at risk. For me, the most important outcomes of all of this research is that we:
De-stigmatise HIV, in part by sharing the good news part of the story. The fact that people with HIV can have a near-normal life span if they access treatment can make it easier for us to talk about HIV and will encourage more HIV testing, adherence and disclosure.
Emphasise the importance of early access to treatment. We need to encourage people to get tested often and regularly, because early diagnosis means earlier access to treatment and a better prognosis for the future.
Normalise HIV testing! Encourage everyone to get tested, no matter their age, gender, sexual orientation, ethnicity, ability, relationship status, etc. We have to stop making assumptions about who is or is not at risk and forget about the ‘high risk’ boxes. The message that everyone can be at risk is an important one so that people do not slip through the cracks and get diagnosed late.
Address the wider social determinants of health. Sexual health is not experienced in a vacuum. It is directly related to many other aspects of our lives. We cannot prevent HIV nor properly support people living with HIV without addressing these other aspects.
Support people living with HIV to address the factors that can shorten life expectancy and good health – for example, addressing mental health and supporting smoking cessation/reduction.
- Protect and widen access to treatment, at home and around the world. The disease hasn't changed. Only our ability to treat it has. In countries like the UK, where we have treatment available, we need to protect this. The NHS is the reason why we have such great health and life expectancy outcomes. And in other parts of the world, where people do not have treatment (representing about 20 million people worldwide - more than half of those infected) we need to strongly advocate for widening access.
In the end, this is a very good news story, but as is often the case, the more vulnerable individuals get a wee bit left out. We can’t ignore these vulnerabilities that can put individuals more at risk both for acquiring HIV, getting diagnosed late, or struggling to adhere to the medication.