Now we’ve got a life, it’s time to sort out our finances, argues Martin Flynn
Recent research shows many HIV positive people in the UK, live in abject poverty. They find any kind of financial planning entails a minefield of inadequate state benefits, poor housing, low paid jobs, and mortgages refusals.
Prejudice and discrimination are still rife among financial service companies who assume we are lepers, unable to live productive lives, and who drain the system. They continue to base their risk assessments on the idea that we will die young, penniless and in severe pain. That said, all financial experts working in the gay and HIV fields agree that the first thing all money-conscious HIV positive people should do is make a will. This will ensure that what little we have goes to our loved ones.
Bob Thomson from Glasgow, in his 40s and HIV positive for 15 years, outlines the problem: “Ten years ago many of my HIV positive friends were dying, at a time when there were no effective drugs and little hope.
“People diagnosed were told they had just a few years to live. So they stopped work, cashed in pensions and lived for today rather than plan for tomorrow.
“It’s a cliché I know, but when combination therapies came in the mid 1990s it really was the Lazarus Effect. The inevitability of certain and painful death faded into the distance. Now most of my positive mates are in work or are retraining and trying to get back into the job market.
“I think it is true what they say if you take your pills as you should you could well live to be three-score-and-ten at least. But even though we’ve won some battles against stigma and discrimination, we still face refusal or extreme sanctions from financial companies as well as ignorance and prejudice at work and with basic housing.”
But in small but important respects the tide on the financial front is beginning to turn. From October 2004 the Government will extend protection for all HIV positive people under the Disability Discrimination Act (DDA). This means, if an individual with HIV or Aids is dismissed or discriminated against because of a reason relating to their disability, they may be able to claim discrimination under the Act.
Slowly, it is dawning on the finance industry that we are and will be productive members of society who earn a living, pay taxes and save for our futures. Many of us remember the days when anyone suspected of being gay or HIV positive was unable to get a mortgage or insurance. But just as finance companies have begun to take notice of the pink pound and the purchasing power of the gay community, they are beginning to realise people with HIV can be an equally viable financial proposition.
Last September, a study in the medical journal the Lancet concluded that HIV positive people on anti-retroviral therapies had death rates similar to those with other chronic diseases. Dr Bernard Herschel of Geneva University, measured death rates among 4,000 people with HIV and compared them with the general population. He told the BBC: “Successfully treated HIV positive and hepatitis C negative patients have short term mortality as low as, or lower than, patients with cancer who have been successfully treated - a group that is able to obtain life insurance.” The research made the point that there is no medical reason to bar people with HIV and Aids from taking out life insurance. But while patients with cancer are able to obtain life insurance, it remains virtually impossible for people with HIV to get life cover despite promises from the industry that they will make things easier for us.
It is a common misconception among people living with HIV that they cannot get a mortgage because of their health status. In the past many mortgage lenders required people to take out life insurance. But this is no longer the case. There are now a large number of lenders who do not demand life insurance and people who are HIV positive should seek a mortgage from one of these. “Life Insurance is a health issue,” says specialist company Isis Financial Planners, “but loans, mortgages and savings are financial issues. The two issues need not be interlinked. Just because you have been turned down for one it does not necessarily mean you will be turned down for the other.”
The obvious downside of this is that many people with HIV are not well enough to work full-time, which generally deprives them of access to big enough loans to buy property, at a time when prices are climbing through the stratosphere.
For people trying to exist on Income Support, or Incapacity Benefits, things are still tough. Their situation is hindered by the persistent myth that tens of thousands of people with HIV in this country live in the lap of luxury on hundreds of pounds of weekly state benefits.
When PN spoke to the Department of Work and Pensions earlier this year they confirmed that only just over 3,000 people with HIV received Disabled Living Allowance (DLA). This is a tiny fraction of the estimated 60,000 people in this country living with HIV. Recent debates in the PN’s letters pages, after Allan Morris’ controversial ‘Speak Up’ column about people living on benefits, confirms that it remains a contentious issue which makes readers defensive and angry.
Anyone recently diagnosed will tell you it is next to impossible to get DLA these days and getting any other sort of benefits is just as hard. Allan Morris is the first to acknowledge how hard it is to keep in work when our health is variable and we have to suffer endless yucky drug side-effects that can make us sick, depressed, give us the runs or force us to face treatment failure and the progression of HIV onto Aids and the inevitable horrible disease, tumours and death.
People coming to the UK from abroad who get diagnosed with the virus also face branding as health tourists at best, or at worst thieving asylum seekers. But it is important to remember, you do not have to mention HIV or Aids on claims for benefits such as Income Support, Incapacity Benefit or Severe Disablement Allowance. Terms such as ‘Chronic Viral Infection’ can be used on forms and medical certificates.
Often it feels we have to put up with a lot and that no-one is going to help us solve our financial problems but ourselves. So, what’s the alternative? Perhaps it comes down to looking after our mental health and well being. We all have to strive to get back into work, earn whatever we can, save a little each month and try to plan to be old, grey and secure rather than just old and sick and poor. The next step is to try and work our way through the financial minefield and to identify companies that don’t condemn us or, worse still, rip us off.
There are now reputable people who won’t turn their back on us when we try to sort out our financial future. We can get travel insurance, even though there remain ignorant countries like the USA, which still bars HIV positive visitors. We also have the protection of the law in the workplace and a growing number of banks and building societies that will give us mortgages. Of course, it remains important to seek friendly, supportive and reputable financial advice and to be very, very careful how and to whom we disclose our HIV positive status.
On the upside, many people find, once they deal with their diagnosis and learn to cope with the ups and downs of living with the disease, they are able to focus on dreams, projects and creative career goals they had once shelved.
I have spoken to many people with HIV who have turned their lives around since being diagnosed and are now out of the rat race and doing something creative and rewarding rather than just on a manic search for money, career and shallow success.
We are in a unique position to stop burying our heads in the sand and face up to dealing with our finances. The vast majority of us are now living healthily with a disease that once meant a death sentence, so sorting out our money problems should be a doddle by comparison.
