Lee Suckling: HIV stigma is the real killer

Society has moved past some of the original stigma that plagued HIV and AIDS. Photo / Thinkstock

I applied for Southern Cross health insurance a few weeks ago. My 30th birthday is fast approaching and I thought, "I'll never be healthier than now", and would thus get the lowest premium for the rest of my life.

Ten days later, upon being presented with my policy, I cancelled it because of one specific stipulation. The policy outlined that no treatment for HIV infection, or any illnesses resulting from HIV infection, would be covered by insurance.

Now, my risk of contracting HIV is almost non-existent. I'm a married man in a monogamous relationship. I don't use drugs. I have never received medical treatment in an unsterile environment overseas.

However, I am also a gay man, and HIV stigma is a plague that continues to follow my community, more than 30 years after the AIDS crisis emerged.

What Southern Cross's policy exclusion says to me is, "HIV is something you do to yourself". It is singled out, from a list of countless other infectious diseases, as one not worthy of treating under insurance. For that principle, Southern Cross lost me a lifelong customer.

If I contracted Ebola, conversely, I would've had no such problems getting private healthcare treatment under insurance.

Earlier this month, Austrian magazine Vangardist made an effort to counter HIV stigma by using the blood of HIV positive people as ink in the printing process. The magazine appreciates, like many HIV awareness groups worldwide also do, that HIV stigma is more crippling to society than the disease itself.

Hopefully in our lifetime we will see a world free of HIV and AIDS. Until then, the stigma around HIV actually contributes to new infections. It doesn't reduce them.

According to HIV and AIDS awareness group AVERT, this stigma exists primarily because of the misconstruction that HIV transmission is the result of moral fault. Because there is the perception is it only a disease associated with behaviours some disprove of (those being homosexuality, drug use, sex work, and infidelity), the stigma says HIV is the result of personal irresponsibility. Insurance policy exclusions only reinforce this.

HIV stigma also exists, of course, because HIV and AIDS are associated with death. And, as is visible with our sidelining approach to those with cancer, degenerative diseases, and even the elderly, society doesn't like to associate itself with anything to do with death. As healthy people, we like to bury our heads and think, "well, there's nothing I can do", and move on with our daily lives.

A study published in the Journal of General Internal Medicine found those who hold high stigma around HIV are four times less likely to seek testing and treatment. Such unwillingness to accept risk not only contributes to HIV's spread (a large proportion of new transmissions are via those who don't know they have the virus), it also prevents early diagnosis. This makes treatment less effective, and, again, increases the likelihood of transmission to others because of the accumulated potency (called the 'viral load') of the HIV virus.

Society has, thankfully, moved past some of the original stigma that plagued HIV and AIDS. Early advertisements that upheld messages such as "you can't get AIDS from a handshake" and "you can't get AIDS from sharing a cup" helped a lot in this process.

However, the stigma persists in other ways. As noted in the case of Southern Cross, there's healthcare industry stigma. There's also employment stigma, and travel entry and stay stigma (particularly in some countries in Asia and the Middle East, and even some Pacific Island nations).

Equally harmful, and potentially more detrimental, though, is self- or internalised-stigma.

Self-stigma is born out of fear of discrimination. It's a fear of negative reactions from one's family, community, and even government or country. It's a fear that concerns transmission to others, public shame and humiliation, rejection, and lack of mental and medical support.

Acknowledging the exclusive and effective routes of HIV transmission (read them on Aidsmap) is a starting point in understanding who is, and is not, at risk. Straight or gay, if you're sexually active, getting tested for all STIs regularly (including HIV) is another important step.

Perhaps most vital, though, is changing your mindset to "HIV neutral". This is charitable organisation The Stigma Project's key goal: to create a world that is informed and constantly aware of the evolving state of HIV and AIDS. HIV neutral means emphasising humanity of all people, and removing judgement because of someone's HIV status, whether it be positive or negative.

HIV is now classified as a chronic manageable condition. It's not a death sentence. Treatment focuses on people living full, healthy lives, and reducing new infections so the world eventually reaches a zero rate.

This is a real possibility in our lifetime, but it's not an option without societal removal of stigma. That starts with every individual changing the way they think about HIV.