The Slimming disease

The prevalence of HIV in the general population of Zambia is a staggering 12.7% (UNAids 2012), mostly distributed amongst the younger generations. I hospital, we see a lot of the sharp end of the stick, with a significant chunk of the patients, and a lot of the really sick patients, presenting with complications of HIV. About half of those that die on the wards, do so of complications of HIV.
For those not as aware about the disease, human immunodeficiency virus (HIV) is a viral disease that is spread through blood contact, with the majority being sexual contact. The virus affects the cells of the immune system, slowly depleting the white blood cells responsible for hunting out infections and expelling them from the body. Over a gradual period of years (about 8 years on average) from initial infection, the body loses its ability to fight off the infectious insults that are bodies are constantly being pelted with. The severity of these opportunistic infections (who are making the most of a body with its guard down) increases as the immune system gets weaker and weaker. Firstly, commonly seen are things link recurrent skin or chest infections, weight loss or TB. Later on come the more severe infections, many of whom are almost never seen outside of patients without HIV. It is these defining illnesses that in the early days of knowledge of the disease heralded the onset of AIDS (Acquired Immunodeficiency Syndrome) which is the late stage of the disease.
 The disease first erupted onto the global consciousness in the mid 1980s, with the most prominent location being within the gay community in San Francisco, where several of the rare conditions linked with having a weak immune system were repeatedly being found within gay men. Debate raged at the time about the causes for the disease, with different groups within society attributing the illnesses being described to a range of causes, many reflecting their strong prejudice against homosexuality. Within the gay community in America’s west coast, opinion was divided about whether the cause was through unprotected sexual contact (and therefore precautions should be taken) while others believed it had nothing to do with sexual behaviour. Although I’m yet to see it, a movie ‘And the Band Played On’ is supposed to be a great reflection of some of the dynamics of the period.
At the same time that debate and prejudice was flying in the States, the disease was beginning to take hold elsewhere, although without the recognition of the worlds political and medical elite. I have recently finished reading the memoirs of Peter Piot, who is the head of the London School of Tropicsl Medicine where I studied earlier in the year. As a Belgian tropical medicine and sexual health specialist, who had been one of the key players in deciphering the original Ebola haemorrhagic fever outbreaks in the jungle of Zaire (now the DRC), he worked a lot with patients from the portion of Africa that King Leopold and subsequent Belgian governments had taken control of. Hospitals in Kinshasa, Brazzaville and Bujambura were starting to get filled up with patients with clusters of previously unseen conditions. Rare fungal pneumonias, previously vanishingly rare bleed vessel cancers, widespread tuberculosis or other mycobacterium infections were becoming monthly, weekly or daily occurrences. Evidence now points to the original source being in rural central Africa many decades earlier.
Worldwide demographic distribution of the disease varies massively depending on the country. Southern Africa has ended up with the heaviest burden to carry of any area, due to a range of factos including high levels of migratory workers, limited empowerment of women, age discrepancies between men and women in relationships, poor access to healthcare and contraception just to name a few. The majority of those infected with the disease, are the sexually active general population as well as the unfortunately sad situation of children who contracted the illness during pregnancy, childbirth or breast feeding. This is quite different to the population affected in the west. A lot of the burden of disease here still remains in MSM (Men who have sex with men – the term referring to the risk factor for transmission, rather than gay/homosexual which is referring to their identified sexuality) population. In some parts of the world, it is well established in the IV drug using population, especially in places such as the former USSR.
The disease still carries massive stigma worldwide, with persistent opinion in large parts of the world reflecting prejudice held against those specific groups in society that are already marginalised – homosexuals, drug users, prostitutes etc.
Given the widespread distribution in southern africa the stigma takes s slightly form. Testing has become ubiquitous, yet it is something not readily broadcast. Given HIV’s prevalence ands its major impact on nearly all spectrum of disease, from psychiatric, to neurological, to respiratory, to gastroenterological, asking about someones ‘status’ is a critical question. Taking a history via translator in a big open ward, or a crowded outpatient clinic room, the tones tend to become a bit more hushed, as the patient is asked “do you know your ‘status'” or “have you had your RVD (retroviral disease) test”. There is generally a good uptake of testing in the community, with screening taking place at schools, workplaces and community gatherings.
A big chunk of our patients don’t know their status on admission, and its hard to know how reflective that is of the general population, as we are just seeing one end of the stick as people run into complications from the disease. Most seem to be willing to undertake the test, including slightly awkward moments of having to tread carefully when treating local chiefs and other prominent people, as I was unsure whether it was markedly offensive to ask their ‘status’, but all were happy to grt tested and were thankfully negative. Testing is coupled with pre and if necessary post test counselling so patients are appropriately supported through a potentially life changing investigation, medically and socially. I think that many that come back positive, were aware that that was a strong possibility, as their unexplained weight loss, fevers, night sweats, cough or diarrhoea had to be from something, and whilst the patients are not all literate or highly educated, they aren’t stupid and have seen similar things with others in the community. I have only had one case of a patient who flat out take the test, and there wasn’t any way or reason to force him to, without undermining his autonomy.
Treatment available now in Zambia is world class, although the difference between what is available in Zambia and the UK or USA is availability of 3rd, 4th or 5th line options. Should the first two options fail, which they occasionally do, especially if the patients are on treatment for decades, which those put on to Anti-retrovirals (ARVs) in the early 2000s are now approaching. I am constantly amazed that patients without electricity, running water or waterproof housing or other things we would consider necessities of life can manage to take such good care of their meds and notes. Adherence is drilled in to them, and although we see a lot of the defaulters running into problems, most have very little issue and hopefully will on to have decent life expectancy, now living with a chronic disease like diabetes, rather than a death sentence when it was only 10 years ago for many of these patients. Worldwide the major success is that the incidence of disease (new people acquiring the disease) is falling, due to better treatment of those with HIV and transmission reduction strategies such as condoms, male circumcision (roughly halves your risk of acquiring HIV) and awareness campaigns about the methods of transmission. The prevalence (total number of people living is the disease) is rising, which in a way is a success as it reflects the increasing life expectancy.
Most of the first line medications are quite well tolerated, although each has its own side effects to be aware of, including things like renal dysfunction, anaemia, hepatitis, psychiatric symptoms etc. The meds with very disfiguring or unpleasant side effects have now got replacements, with most patients having been switched over. With the drugs coming in combination formulations, most patients would take between one and five tablets a day, which is dramatically better than the handfuls taking in the ’90s and is a big fact in aiding compliance.
I had my own run in with HIV about a month in to my time at St Francis. A very sick young guy had just been wheeled onto the ward into the ICU bay (the only difference from the main ward was they can get a couple of litres of oxygen if the machines are working, and they are closer to the nursing station). He was known HIV positive patient that wasn’t on treatment, and was readily apparent that he had advanced kaposi sarcoma (KS) – a type of blood vessel cancer that is most commonly seen in advanced HIV due to interaction with the HIV virus and another type to virus. He was unresponsive, with a close to unrecordable blood pressure.  Every couple of weeks or so, we have patients such as him present late in the illness. Due to the immune system suppression caused by the virus, the body can house several opportunistic infection of which the KS is easily seen, but indicates potential for others not easily identifiable. A lot of symptoms of diseases are normally actually symptoms of the body’s immune reaction to the disease causing organism, so without a functioning immune system, advanced disease can often only have mild symptoms.  Trying to get an IV line into him to give him much needed antibiotics and fluids was not easy given how dehydrated and shocked he was, with only the big veins of the groin and neck looking likely after multiple attempts trying in the arms and legs. With the urgency of a sick patient, several of us doctors, students and nurses were all working trying to get IV access, and just as a drip was successfully placed in the groin, I felt something spray into my eye and onto my face. No one saw blood on my face, and when I rinsed my face a few seconds later, there was no blood on my hands, so whether what I felt was some blood from the IV line, or some IV fluids splash was the moot point. If it was fluid, that was no concern. If it was blood, the risk for transmissiom for HIV positive blood exposure to mucocutaneous surfaces of which the eye is included is less than one in a thousand. However the higher the viral load (amount of virus per microlitre of blood), the higher the risk, and this patient was bound to have a sky high viral load given the severity of his condition. The options were: A) hoping it wasn’t blood that splashed B) going on to a month of ARVs to further reduce risk of the virus being transmitted.
Given you have one shot as if the virus takes hold within your body, there is currently no treatment to eradicate it, I faced the inevitable and got my blood tests, talked to one of the local doctors in charge of post exposure prophylaxis (the term for taking ARVs to minimise chance of transmission) and picked up my tablets. Due to the risk of virus resistance in the local population, the regimen included Lopinivir/ritonivir that belong to the protease inhibitor class of medications, which are known for their nasty GI side effects. It was remarkable the short lag time between taking the first dose, and needing to be on the toilet. Things settled a bit over the 28 days I had to take them, which was a relief after an unpleasant couple of initial days. I wasn’t racked with nausea as some are, but had it enough to make me lose my appetite for much of the month.
Our evening meals are cooked in the hospital mess for the volunteer doctors and students. they are often a bit limited scope and variety, so my appetite hadn’t been the biggest. Coupled with a paucity of dairy products, sweet food and a couple of months of travel, I was already a bit leaner than the 100+ mark I had been for a good few years. By the end of the month, I was about 14kg lighter than when I left the UK, and whilst the rate of descent has slowed since I stopped the meds, the belt has had its third new hole added and is due a fourth.
Thankfully, my anxieties about my three month test were relieved when I managed to get out of clinic early, and got the all clear, with just a six month confirmatory test as a formality, as if I was going to get it, the three month test would have shown it.
It is hard to know what I would have done if it was positive. Millions of people worldwide live with the illness, and socially it would have been intriguing to see how people would react, and what stereotypes and prejudices they would apply. Would it be pity? Scorn? Fear?
When talking to many people back home about the illness, most are shocked to find that there is good treatment for it, and that its not a death sentence, and that it is widespread amongst multiple social and ethnic demographics. If anything, the message I would tell people, is that it is just another illness, that can be managed, and whilst it will affect your life and shorten your life expectancy, there is no grounds for making them outcasts, just as we don’t (or at least shouldn’t) ostracise those with heart disease or cancer.
In my last week, I got the chance to go on outreach clinic to one of the HIV clinics, partly to remind us that most people actually do well on treatment, as the ones we see are in hospital because they aren’t doing well. It was nice to rattle off the 30 different questions about any possible symptoms, and have a succession of ‘no’s’, although there were still a few sick ones in the mix.
The fight against HIV certainly isn’t over, especially in Southern Africa, but it is a fascinating disease, medically and socially. At one stage in the 1990s, it was looming as a potential cause of impending social collapse in many Southern African countries. By stripping  or at least incapacitating these countries of their working and parenting populations, industry had no employees, no exports could be generated, health care costs were skyrocketing, and thousands of children were being left orphaned, with added burden falling on those left behind. As things have plateaued, it will be interesting to watch whether the global community will follow through on its commitment to provide the financial support and economic facilitation needed to bring treatment and prevention to the millions of people infected or at risk.

 

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