The law of living longer
Iain Brady, Kathryn Viegas, and Nadine Behan from the HIV/AIDS Legal Centre look at some of the legal issues relevant to people living with HIV/AIDS in considering the longer term, drawn from HALC’s experience in assisting clients through the last 15 years
Improvements in the life expectancy and quality of life for people with HIV/AIDS in the last quarter of a century have transformed HIV/AIDS from being considered a terminal to a chronic condition. The change in expectations and outcomes carries a corollary change in the types of legal issues relevant to PLWHA (people living with HIV/AIDS). The HIV/AIDS Legal Centre (HALC) in Sydney, New South Wales, has been providing legal advice and representation throughout the change in the epidemic.
At HALC we have seen a shift in emphasis from end-of-life legal matters and planning, such as wills, enduring guardianships and powers of attorney, to matters such as migration, housing, debt and disclosure issues, which may be seen to be problems of ongoing living and planning for the future. In practical terms, the end of life still raises important legal issues for PLWHA to plan and prepare for, however, that planning now entails fewer hospital visits for HALC, and is conducted in preparation for a future probable need, not a present actual need.
Life problems – travel
Travel and travel insurance are issues of some concern for PLWHA. Where you can travel with your medications, and how to plan for travel in countries where HIV is a bar to entry are issues which HALC is asked about regularly. Planning enough medicines for your trip, ensuring the medicines get there and not being barred at the border of your destination are equally critical problems. PLWHA NSW (the organisation) has put out a booklet on travel. It is available online athttp://www.plwha.org.au/PLWHA/frameset/newplwha.htm, downloadable as a PDF booklet. ACON healthy living advisors or state AIDS Councils can provide up to date advice and guidance regarding all travel issues. Information about international travel can also be accessed fromhttp://www.aidsnet.ch (click on English, then on ‘Immigration’ clauses under ‘Information and Resources’ on the left of the screen).
Travel insurance does not generally cover pre-existing illness or conditions. This means that you will not be covered for your HIV condition or a related illness, if you were HIV positive when you applied for the insurance. You will still be covered for illness or injury not related to HIV. In the past, this has lead to disagreements between insurers and clients as to whether an illness is related to the HIV condition of the insured party – this then becomes a question of medical evidence. In addition the policy may also deny any liability at any rate for HIV. Each policy contains full disclosure of what is and isn’t covered, and you need to check the policy disclosure statements thoroughly before entering into the contract.
You are generally only required to disclose your HIV status (or any other pre-existing condition) if you want to be covered for that condition. If you do want to try to get cover for your condition you need to disclose the condition and the insurer may consider covering you. However, cover has never been granted for HIV. If you do not seek cover, there is no reason to disclose your HIV status. As policies generally only ask for disclosure of pre-existing conditions where you seek cover, a failure to disclose is unlikely to lead to any adverse consequences such as penalties for non-disclosure.
Migration
Migration has become a large source of inquiries at HALC. HALC actively supports the human rights of PLWHA to travel and migrate. PLWHA are migrating to Australia for a variety of reasons, but primarily in the context of partnership visa applications. Being HIV positive is not a bar to migrating to Australia, however it creates for most people an extra hurdle to cross in making a successful application.
All visas have health criteria. Being HIV positive will ordinarily mean that you will fail the health criteria. Only some visas allow for waiver of those criteria. Principally only the partnership visa categories allow for health waivers.
The health waiver works by weighing the relative costs and benefits to Australia of allowing the applicant to stay. A Medical Officer of the Commonwealth provides an estimate of the costs of health care or community services likely to be required by a hypothetical person with HIV and whether these costs will be significant. HIV positive applicants are routinely estimated to cost the community between $240,000 and $250,000.
To successfully argue for the waiver to be granted, you need to show that the cost, although significant, is not undue. This means raising any compelling and compassionate factors and the social, emotional and economic context of the applicant and their partnership into the equation, and considering the benefits to Australia and the Australian partner of the applicant being allowed to stay. The detriment of not letting the applicant stay, to them, their Australian partner and Australia generally is likewise considered. This equation will usually include medical, social, economic and emotional considerations and evidence.
Superannuation – choose the right fund with the right options
As PLWHA longevity extends, attitudes to superannuation must also change. Rather than viewing superannuation as forced savings from which PLWHA will never benefit, superannuation needs to be viewed as pooled money available for the long term – whether for retirement or for rainy day provision. Many if not most PLWHA will live to benefit from their superannuation money. Since 2006 many or most people have been able to select their own super fund, and can change and consolidate monies to one fund, or run several funds at once. PLWHA need to consider and make educated superannuation choices that make sense for them.
PLWHA will have particular needs from superannuation. Retirement will be one consideration. A source of pooled funds for use if health deteriorates is another. There are statutory grounds for early release of superannuation monies. These include: financial hardship, payment for medical treatment (unavailable through Medicare), modifications to the home for disability, and payment of mortgage defaults to avoid foreclosure on the family home. For HIV positive people, monies may also be able to be withdrawn where there is debt which is causing stress, which is exacerbating the HIV medical condition. These early release grounds are only available to you when you have been on Centrelink benefits for 26 weeks or more.
A few funds do not allow for the early release of funds. You should check with the superfund you have been put into as to whether it allows for early release of funds if needed. There is no point finding out that you can’t withdraw the money from your superannuation when you need it.
Total and permanent disability insurance
Most superannuation carries total and permanent disability (TPD) insurance, or income protection insurance. Each fund provides different insurance schemes, some funds don’t provide any. The standard insurance offered by the fund may be inappropriate for you. The insurance may only cover fulltime workers, if you work part time, it may not cover you. It may not provide a big enough payout. The definition of total and permanent disability may be too restrictive to be likely useful. If income protection is provided, this may not be what you want, preferring a lump sum if you become totally and permanently disabled.
TPD insurance will hopefully not be needed for most PLWHA, but it has in the past been an important resort for those whose health has deteriorated. It is worth considering whether you want TPD insurance, and whether the insurance you get thought the fund you are with is appropriate for you. You can switch funds to get other more appropriate TPD insurance if you need to.
Disclosure
Disclosure has always been a critical issue for PLWHA. As longevity increases, the struggle with disclosure may also be prolonged. There are very few occasions where PLWHA are required to disclose their status to another person. There is legislation to protect confidential information in some circumstances (such as privacy law, which is discussed below), and anti-discrimination makes discrimination against people with HIV unlawful. Notably (and controversially) in NSW prior to engaging in sex is one time when disclosure is required by law. This applies whether you are intending safe sex or not. In NSW, safe sex is not a defence to the Public Health Act offence of failure to disclose prior to sexual intercourse. It is a probable defence to any criminal charge for deliberate infection type offences. The disclosure requirement is probably broken every day of the week and is rarely if ever charged, and then usually only as a rider with some more serious charge. At time of writing, there are no reported cases of charges under this section.
This disclosure requirement does not exist in all states. The obligation to disclose prior to sex varies from state to state. Some states, such as Queensland, put the onus on people - within reason - to know their HIV status and take due care not to transmit to others (Public Health Act 2005, Section 66). Most States have deliberate or negligent transmission offenses. Victoria has reckless endangerment offences, sections 22 and 23 of the Crimes Act 1958, which could arguably be applied for non-disclosure of HIV status prior to sex. HIV positive people should ask their doctor or contact their State AIDS council for advice regarding their rights and obligations in relation to this issue.
There is no requirement to disclose HIV status in the vast majority of employment settings. Where there is no reasonable likelihood of transmission of HIV in the workplace there is no need to disclose. Only a couple of occupations may require disclosure. The defence forces, who require soldiers to bleed safely on the field of combat, require testing and will lawfully discharge PLWHA. Health care workers who perform a quite restricted range of procedures - usually associated with surgery - are required to know their status and not perform those procedures if they are HIV positive. Most health care workers will not be affected by this, and do not need to disclose to patients or employers.
Similarly PLWHA do not need to disclose to health care workers, including dentists, from whom they are receiving treatment. Universal precaution procedures used in medical settings are designed to control and eliminate risk of transmission between patients and health care workers. Where the standard procedures are followed, both parties will be protected.
Privacy
Some PLWHA may want to disclose their status, others will not. All PLWHA have the personal choice about their health information. PLWHA should be aware that if they do wish to maintain their privacy, they need to choose when and to whom to disclose carefully. Once the information is out, there is little that can be done to prevent its spreading.
Privacy laws protect HIV status disclosures by PLWHA in some situations, but not all. Generally in government or public sector settings, the information will be protected under a State or Federal Privacy Act. However, in any small business employment setting and all informal social settings, disclosure is not protected at all. Once the information is told, it may be retold and spread without legal recourse. Legal privacy protections are relatively new and they not yet grown and extended far. PLWHA need to consider the implications of an HIV status disclosure before making it.
Changing focus
Increased longevity raises issues relating to making sound choices about future needs and contingencies for PLWHA. It is less feasible nowadays to live with a fatalist short term agenda. Most PLWHA are likely to outlive the usefulness of that approach. Finding that you are living with a chronic illness and not a terminal condition requires planning for practical needs and potentialities in travel, migration, superannuation, insurance and privacy, to name but a few considerations. Practical legal consideration will include the end of life planning of wills and enduring guardianship and enduring power of attorney, as was critical when the epidemic was at its harshest. Improved longevity is changing the legal focus of interests to issues of planning for life.
Iain Brady, Kathryn Viegas, and Nadine Behan work at the HIV/AIDS Legal Centre, Sydney.
The Law Report, Radio National – 24 April 2007 (www.abc.net.au/lawreport/stories/2007/1903982.htm).
The Occupational Health and Safety Regulations 2001 (NSW) (Regulation 9).
The Australian Universal Infection Control Guidelines provide details about ‘exposure-prone’ procedures. The Guidelines can be found here: http://www.health.gov.au/internet/wcms/Publishing.nsf/content/icg-guidelines-index.htm
| 
