Patient Summit Europe 2018

Oct 16, 2018 - Oct 17, 2018, London

Prove IT: The Business Case For Adding Patient Value

Tackling Stigma

How pharma and patient groups are tackling negative attitudes around health

Sadly, stigma around health conditions remains a part of many patients’ lives. Many will not disclose a diagnosis for fear of being judged by peers, employers, health professionals, colleagues and wider society. In fact, there is clear evidence that such negative societal attitudes impact health outcomes, resulting in diagnosis delays and impaired treatment.

Some diseases are heavily stigmatized – including mental health, HIV/AIDS, hepatitis and some skin conditions – leading people to restrict their participation in society, impairing their chances of living happy, healthy lives.

However, to one extent or another, all patients suffer negative attitudes towards their condition, creating challenges not faced by ‘healthy’ members of the population. Stigma is embedded right across society, even affecting issues such as policy and research, where certain disease areas receive more funding than others. A clear example was highlighted in a InVentiv report from last year, which found the National Cancer Institute’s annual budget to be more than three times that of the National Institute of Mental Health, despite a larger number of people living with mental health issues in the US (43.6 million compared 15.5 million cancer survivors).

Work to tackle stigma towards health conditions is widespread among patient organizations but pharma too has a role to play in educating the public and changing attitudes.

Sex, drugs and rock’n’roll
The AIDS epidemic of the 1980s instilled fear in an entire generation of people and, while HIV is now far from a death sentence in the Western world, this legacy remains, believes Damian Kelly, Director of Patient Advocacy Alliance. “There is still a big stigma around HIV that is related to sex, drugs and lifestyle.” Along with diseases such as hepatitis C and diabetes, an HIV diagnosis often invites judgements around how the infection was acquired, with outdated fears of transmission continuing to fuel discrimination.

“Stigma comes from two avenues,” says Stephen Head, Associate Director, Public Affairs International at Gilead Sciences, who manages the company’s patient interaction around HIV in Europe. “The first is blame, ‘You did something wrong to get it’, and the second is fear of infection. People stigmatize those living with HIV based on the fact that they think it’s infectious to them.”

Non-infectious conditions such as depression and schizophrenia also carry negative stereotypes in the public consciousness. While taboos are being broken – thanks in part to influential people like Princes William and Harry focusing on the conditions and popstars Lady Gaga and Demi Lovato speaking openly about their mental health experiences – talking about it is only one step in the right direction, says Janet Paleo, US Treasurer and Board Member for the World Federation for Mental Health.

“It is getting more common to talk about it, but the stigma is still great,” she says. “People are more accepting, but they still look at you differently after you reveal that you have mental health experience. Part of it is perceived weakness and part of it is the sense of unpredictability – people aren’t sure what you’re capable of doing, so it’s a way to try and protect themselves.”

The perception that people with a mental health condition are dangerous is a persistent one, says Anna Gray, a member of the World Federation for Mental Health. The perception has not been helped by the medicalization of mental health, she adds.

“There’s been over 20 years of anti-stigma campaigns in the US now, yet research five years ago showed that stigma increased a hundred-fold during these campaigns. This is partly because the campaigns said it was an illness not a reaction to trauma, and this left the public with the impression that it was something people cannot control at all, that you are totally unpredictable.”

Stigma can also be cumulative. “If you look at how HIV disproportionately affects gay men, then you consider that mental health issues are higher in gay men than the general population, then levels of anxiety and depression will inevitably rise with a HIV diagnosis,” says Head.

Compounding it all, people who have been diagnosed with a stigmatized condition often blame themselves for the state of their health or question their past behavior, which can add self-stigma to the attitudes of society.

Keeping quiet
Healthcare settings are not immune from stigma – patients often feel the harshest judgements from health professionals – creating stark effects, for example, patients that distance themselves from HCPs can see diagnosis delayed, while bias among HCPs can lead to misguided actions and sub-optimal care.

“I don’t tell any of my general practitioners that I have a mental health issue,” admits Paleo, who once had a stomach bleed dismissed by an HCP as phantom pains. “My experience has been that the moment I tell them, they stop looking for what’s wrong physically with me. Once they see a psychiatric diagnosis, all the medical stuff goes away.”

Concealing diagnoses, coupled with a lack of joined up healthcare, can have serious consequences – for example, people who do not reveal their HIV status could be prescribed drugs such as statins or the contraceptive pill, which interfere with antiretroviral drugs.

“For so long we kept HIV so specialized that if you even sneezed you had to go and see a specialist,” says Kelly. “This made a lot of GPs very nervous about dealing with HIV – it adds significantly to the stigma if you are told you can’t be dealt with by your GP.”

With effective treatment, HIV has been transformed into a chronic condition, and so people with HIV are living longer and experiencing comorbidities, which means they have to engage with HCPs such as cardiologists and oncologists. “Every time they go to a new specialist, they have to explain their diagnosis again,” says Gilead’s Head. “The feedback we get is that sometimes those people aren’t as upto-date with HIV as they could be, and so make unsuitable comments or ask questions that may not be relevant, such as ‘How did you acquire HIV?’ This makes people reluctant to engage with other therapies for fear of being judged.”

Education, education, education
With improved treatment, a long and healthy life is a reality for many people with HIV – a positive image that needs to be communicated more widely. “There’s so many people out there now saying, ‘I’m on prep’ (pre-exposure prophylaxis), which has taken the whole negative message of HIV and turned it into a real positive,” says Kelly. “It’s almost them saying, ‘I’m playing my part to stop this’, which is hugely empowering.” People talking about undetectable viral loads is also powerful, he adds. “You’ve only got to go onto dating apps and so how many people are saying ‘HIV+ undetectable’. You can’t argue with the science; it’s impossible to transmit the virus if you’re undetectable. Undetectable = untransmittable”

Tackling stigma within healthcare settings is top of the agenda for pharma companies leading projects around a wide variety of disease states including HIV, hepatitis and mental health issues. “Particularly in the less-developed world, we see HCPs as a source of stigma to patients,” says Dr Oleksandr Gorbenko, Global Patient Affairs Medical Lead, at ViiV Healthcare. He cites examples of surgeons who are reluctant to operate on newly-admitted patients if they discover their HIV status.

“We have a special project working with young doctors, especially primary care physicians, to develop a good level of tolerance with HIV patients and address the most common problems associated with stigma.”

Gilead too works with a range of patient organizations on messaging. “HIV is a chronic condition with all these multimorbid conditions that sit alongside it,” says Head. “We’re speaking to people who are living with cardiovascular disease and HIV, or renal disease and HIV and looking at how we can work more on joint thinking. The hope is that when patients come into a clinic, a cardiologist asks questions that are appropriate.”

Personalization is a powerful weapon in fighting stigma. “Studies show that the best way to overcome stigma is through personal encounters – meeting people and seeing that they are no different to you,” says Paleo. “Unfortunately, for people with a mental health condition, once they get better, they don’t want anybody to know their background, so they never get the ability to change somebody else’s mind. People go underground, because the stigma is so bad, but they are the very people who could reduce stigma.”

To read more articles like this, download a free copy of our latest magazine, Trends in Patient-Centricity.

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Patient Summit Europe 2018

Oct 16, 2018 - Oct 17, 2018, London

Prove IT: The Business Case For Adding Patient Value