Thursday, 1 December 2011

Not out of the woods yet

Derek is in his late forties, but looking at him you’d be forgiven for thinking he is in his sixties; a kind, gentle soul with sunken eyes and sallow cheeks. In his younger days he worked as a nurse and led a happy-go-lucky existence. He now lives in a hospice in west Sydney.

I meet Derek once a week for coffee. Sometimes he forgets our scheduled meeting and appears surprised when I turn up. The walk to the coffee shop can take a while because his pedestrian skills are impaired and he shuffles slowly. His speech is slurred and his mind periodically wanders, making it hard to hold a conversation with him.

Ten years ago, Derek would have been considered ‘a long-term AIDS survivor’; now he is a statistic among the legion of HIV + men and women who are living with the virus. Sadly, Derek is also one of a growing number of people with HIV-associated dementia (HAD), a debilitating condition induced by HIV infection.

Today marks World AIDS Day. We remember the countless who have been swept by the AIDS tsunami: men and women of all ages, nationalities, creeds and sexualities. It is also a day of solidarity and celebration with the millions of people who live with the HIV virus, leading active and meaningful lives.

But this day also calls for some sober stock taking.

There is now a new generation of young people who have grown up in the age of HIV. Many of them are under the impression that current therapies and access to specialised treatments have secured a safe future for those infected by HIV. There appears to be a prevailing belief that seropositivity is like any other chronic conditions which can be contained indefinitely. Like asthma, or diabetes. This is suggested by a spike in sexually transmitted infections, alongside a drop in regular HIV testing.

It is true that people living with HIV are living longer and better lives; many continue to work and live independently. But these people are also very susceptible to a host of neurocognitive disorders associated with their compromised immune system. And the statistics are staggering.

Writing in the Lancet, Dr Lynn Pulliam predicts that up to 30% of patients infected with HIV will develop a debilitating dementia. Dr Lachlan Gray at the Burnet Institute thinks the problem is a lot more pressing. HIV is now the most common cause of dementia in people under the age of 40, he says. Of greater concern, he continues, is the prevalence of milder neurocognitive impairment. Recent studies have suggested this could be as high as 50% of the infected population. Since patients are living much longer with the virus there is greater potential for damage to occur in the brain which is a viral reservoir where the virus can continue to replicate relatively unopposed.

Many people with HIV are now leading normal lives, their viral load undetectable and their physical appearance excellent. This, ironically, is part of the problem. In an interview shortly before his death, British AIDS activist, Cass Mann, put it like this: “The greatest disservice AIDS charities pay to [HIV+] men today is to present images of them as healthy, buffed, gym bunnies with glossy beautiful bodies, having great lives, climbing mountains, partying in Sydney and looking beautiful. If they showed people in hospices dying of dementia or people with lipodystrophy, that would stop them in their tracks. Having HIV doesn’t make you look like Brad Pitt but it can make you look like an AIDS dementia patient and you don’t want to look like that. AIDS is not a pretty glossy calendar.”

A recent study by Dr. Lucette Cysique from the Department of Neurology at St. Vincent's Hospital, predicts that the number of individuals with HIV dementia will surpass 2600 by 2030. The overall psychosocial and emotional toll on family and friends looking after people with HIV dementia is tremendous. Moreover, the financial impact which such numbers stand to have on welfare and medical services looks set to stretch these sector to capacity. Dr Cysique suggests that the annual cost of care will increase from $29 million in 2009 to $53 million in 2030. This is a sobering thought.

As we don our red ribbon today, there are numerous achievements we can pride ourselves in. A new 2011 report by the Joint United Nations Programme on HIV/AIDS (UNAIDS) indicates that new HIV infections and AIDS-related deaths have fallen to the lowest levels since the peak of the epidemic. The annual number of new HIV diagnoses in Australia has remained relatively stable at around 1000 over the past five years. People with HIV now have access to effective treatments and a raft of services available to them. An encouraging picture.

But now is not the time to stop.

Bill Whittaker, from the National Association of People with HIV, warns against what he sees as Australia's growing complacency in the face of the HIV epidemic.  He sees the current national HIV strategy as “a lamentable drift away from setting bold, time-bound targets essential to generate momentum”. In its annual report, the Australian Federation of AIDS Organisations notes “a continued environment of plateaued funding, with grants for health promotion, policy reform and research being spread thinly across a range of communicable diseases and demands.”

Earlier this year Australia signed the UN Declaration on HIV/AIDS, committing to a goal of a 50% reduction in new HIV infections by 2015. The government must now demonstrate the will and commitment to implement what it has pledged to do. It should revamp the infrastructure to facilitate medical research; intensify educational programs in schools and implement outreach projects to at-risk individuals. These should have easy access to condoms as well as sterile syringes. It is critical that all sectors of the partnership be properly resourced, trained and educated to play their role in harnessing the spread of HIV:  teachers, medical staff, volunteers and social services.

There is no room for complacency. AIDS is still a condition which remains incurable. We must act to curb it; we must reach out to this new generation so that they know how to protect themselves. We must do this without scaring, or scarring, them. There is no time to waste. The global fight against AIDS is not over. We are not out of the woods yet.

Ori Golan is a freelance journalist and volunteer with the Ankali project.


Anonymous said...

Fantastic article.
As a long term survivor with HIV (nearly 20 years) I have managed to complete two undergraduate degrees, qualify as a lawyer, complete an Masters and have nearly completed another Masters with the view of completing a PHD. However the long term effects have slowed my intellect and some days I feel very tired. I still hold down a full time job and get to the gym four days a week and comply with my medication.

I completely agree that the best approach is to stop transmission is safe sex and campaigns such as the grim reaper one should reinstated. However, I lament when I read judgemental comments; they only compound one's feeling of inadequacy. People have to understand that mistakes are sometimes made, accidents occasionally happen. Don't you think that I would love to go back and change the circumstances of the transmission? I guess the perpetrators of these comments never make a mistake, will never get divorced, never make a bad business decision, or never get drunk. I suspect not.

I know that the writers of these comments are not bad people and should not be judged on their comment. Just remember that we are taught to be rational, we try to be rational, but as we all know, humanity is often far from rational. To err is human, to forgive is divine and to strive for a better outcome should be encouraged.

Thank you for reading this ramble.

Anonymous said...

I was in the last years of high school when the controversial grim reaper adds were on tv. It did seem to get the message out. Fear may not always be the right way, but at times it can be an effective message.

Possibly we need to show what life is like on the medication - hands full of tablets every day, with varying degrees of side effects, and even a future blighted with dementia.

Somehow we need that fear of HIV again, without causing fear of those who have it.

Anonymous said...

Thanks Ori, for such an interesting article. Your correct with the introduction of HAART (Highly Active Anti-Retroviral Therapy) in 1995/1996, people with HIV are living productive lives. But the issues of Dementia in patients who have been living with the virus for over 10 years or over 20yrs is of most worry.

I urge all SMH readers to buy a RED RIBBON today... 1st December WORLD AIDS DAY

Remember: for those we have lost
Acknowledge: those who are living with the virus today

Drew xx

Anonymous said...

Thank you for this article, as an aunt of two young adults who were born HIV positive it is good to know about this terrible side of HIV that I was unaware of. They are now 19 and 22. I also urge everyone who can to please support this cause, there are so many different types of people living with this virus please help to make their lives better. They all need our support and understanding. Thank you once again for this article.