Stigma

In 1979, along with 100,000s of other 13-year olds in the UK, I received a BCG TB vaccination. At the time, I was more concerned about stories of how much the TB vaccination jab hurt than about my risk of contracting this disease. But then, who in 1979 was concerned about TB? Medical advances, improved nutrition and better housing meant that tuberculosis (TB) which has been a major cause of death for centuries were now a disease of the past.

And with these advances the stigma and shame that accompanied TB became a thing for oral history projects, with older relatives recalling the fear that accompanied the finding of a “shadow” on the lungs and admission to a sanatorium.

Well, the optimism of the years following the Second World War have been shown to be a little ill-placed. TB, largely thanks to HIV, is once again a major health concern. Unlike the pre-war years, special antibiotics can completely cure TB without the need for protracted “bed rest” in a sanatorium (although there is a worrying increase in virtually untreatable strains of the bacteria in some parts of the world due to inadequate treatment programmes).

Also making a return, as a study reported on aidsmap this week shows, is the stigma and fear that used to accompany TB. This is deeply worrying, meaning that people with the infection may delay seeking medical care, putting their own health at risk and increasing the chances that they will transmit TB to others.

A good place to start fighting the stigma that often causes TB is by finding out some facts about the illness. A good place to find this out and to tackle the stigma associated with the infection is NAM’s booklet, HIV and TB.

Anti-HIV treatment

The best time to start anti-HIV treatment with antiretroviral drugs is not known for certain. UK HIV treatment guidelines currently recommend that everybody who is sick because of HIV should take treatment, and that treatment should be started by everybody whose CD4 cell count has fallen to around 200, the level at which a person becomes vulnerable to potentially life-threatening infections.

In addition, it’s not known if there is any benefit in taking HIV treatment soon after first becoming infected with the virus. Some researchers believe that this may provide a unique opportunity to strengthen the body’s natural defence against HIV. If HIV treatment is taken at this stage, it is recommended that it should be done so in a clinical trial designed to see what the risks and benefits of this approach are and large randomised studies are currently underway in the UK, US and Canada.

But some smaller studies using a different design have already been conducted. An American study compared a small number of people who decided to take treatment within six months of becoming infected with HIV to those who decided to delay starting HIV therapy. After six months, viral load was significantly lower in the people who took treatment soon after infection and their CD4 cell count was significantly higher too.

German doctors have also looked at this question and found that people who had a viral load greater than 50,000 and who started HIV treatment soon after infection subsequently experienced a slower decline in their CD4 cell count and rise in their viral load in the longer-term than people who deferred HIV treatment.

Another unanswered question is how long HIV treatment should be taken for if a person decides to take it soon after infection. Many studies provided treatment for six months and then looked at factors such as CD4 cell count and viral load, but a small study involving 20 people conducted in Germany suggests that this may not be long enough to make any meaningful difference to the body’s long-term response to the virus.

We need the results of the large studies that are currently underway before anything can be meaningfully said about the pros and cons of early treatment for HIV. If it is something that you are considering, ask your doctor about the SPARTAC study  and think carefully about the pros and cons of joining it.

Adherence

The single most important thing you can do to ensure the success of your HIV treatment is to take it properly. Adherence is the term that healthcare providers often use to describe taking your medication, and good adherence involves taking all your medicine at the right time and in the right way. For HIV treatment to work properly, adherence of 95% is the level required.

Healthcare workers often place the primary responsibility for non-adherence on the shoulders of patients, but an interesting piece of research has shown that sometimes people with HIV are given incorrect doses of HIV medication whilst patients on a specialist HIV ward.

The American doctors’ study involved 160 people who were admitted to hospital over the space of a year. They found that errors in the frequency or dosage of medication were made 16% of the time. Some of these errors led to people becoming ill. In another 5% of instances, doctors prescribed drugs that interacted with anti-HIV drugs, lowering the amount of anti-HIV drug in the blood, leading to a risk of viral load increasing and resistance to anti-HIV drugs developing. A further 4% of patients were given HIV treatment consisting of less than the recommended three drugs, and in another 3% of instances patients had their HIV treatment interrupted for the 24 hours following admission to hospital.

“Hospitalisation can place…patients at a substantial risk of gaps in effective therapy”, the researchers comment.

Going into hospital can be a disconcerting, even frightening experience. There’s some information in the recently published second edition of the NAM book Living with HIV that you might find useful. You can read the sections on going into hospital here.

HIV and cancer

Tuberculosis

Tuberculosis (TB) is the biggest cause of illness and death amongst people with HIV around the world and in the UK is one of the most common AIDS-defining illnesses.

It can be cured using a combination of special antibiotics that are normally taken for six months. After just a few weeks of treatment with these drugs, a person with TB will start to feel much better and they will cease to be infectious to others.

But like HIV, a lot of stigma can be attached to TB. Indeed, TB’s association with HIV can make this stigma worse and can mean that people who have symptoms of TB often fear seeking medical help. This was recently shown by a study conducted amongst Africans with TB in London.

The study also showed that stigmatising attitudes towards TB sometimes meant that people had misconceptions about how they became infected with the illness – in some cases even believing that it was sexually transmitted or that sharing cups and plates was an infection risk.

TB usually affects the lungs and is characterised by a persistent cough lasting weeks or even months. People often experience chills followed by fevers and sweats, particularly at night and lose a lot of weight. Chest pain is also sometimes reported.

You should report symptoms like these to your doctor as soon as possible so that tests such as chest X-rays and sputum cultures can be undertaken to see what is making you ill. But as the London research shows, in some cases doctors don’t think about TB sometimes.

TB can be completely cured using appropriate antibiotics. However, they have to be taken very rigorously to work properly and some of them can interact with anti-HIV drugs, so it’s very important that you receive your HIV and TB care from doctors who are skilled at treating both diseases.

There’s a lot more information in the NAM booklet, HIV and TB .