Positive Life NSW

Lance Feeney reports on Positive Life’s upcoming work designed to help you get the most benefit from the health and insurance system.

Thanks to modern medicine, we are living longer – much longer. But, we need to manage side effects and deal with additional health issues, many of which are directly related to HIV infection and the drugs used to control HIV. Some evidence suggests that long-term HIV disease results in premature ageing. All of these factors impact on physical and mental health and are challenging.

We need to be able to effectively use the healthcare system to maintain our health and wellbeing. The health system, however, is complex. It includes many different service areas: GPS; sexual health centres; allied healthcare providers such as physiotherapists, dieticians, nutritionists, acupuncturists, natural therapists and radiography; mental health services; dental services and hospital and emergency care.

It is unsurprising that many of us lack the knowledge and confidence to navigate and negotiate our way though the system – particularly when we are feeling sick. And, if you have problems with the care you receive, your lack of knowledge about your rights as healthcare consumers can make you feel frustrated, powerless and confused.

These issues may be exacerbated if you are newly diagnosed and unfamiliar with HIV clinical procedures, or if you don’t use the healthcare system very often and/or are disconnected from your community. Those in the community with poor education, mental health or drug and alcohol issues may also have significant problems accessing and navigating the system. For those of us living in rural and regional areas, we have the additional issues of distance and isolation.

Research provides a partial picture of the issues. Around 25% of positive people say they experience difficulty accessing at least one health or support service. Financial issues also play a part. We also know that a little more than a quarter of people have experienced less favourable treatment at a medical service as a result of having HIV. This includes increased infection control, avoidance, breach of confidentiality, being treated last, refusal of treatment, being rushed through, harassment and abuse.

Have your say on healthcare

To better understand the issues relating to healthcare access and how we can address the problems you face, we will be holding small discussion groups and face-to-face meetings in early 2010. We would like to talk with you about the issues that prevent you from confidently using:

• S100 prescribers and HIV specialists
• GPs
• Sexual health centres
• Allied healthcare services
• Mental health services
• Dental services
• Hospital and emergency services.

You can email lancef@positivelife.org.au to register you interest or call Lance on 02 9361 6011.

The evolution of insurance

A large international study published in 20081 shows that an individual starting successful HIV treatment aged 20 could expect to live to be 63, and a individual initiating anti-HIV treatment aged 35 could live to the age of 67. The study also provides evidence of the dramatic and continued decline in the risk of death among people with HIV since effective HIV treatment became available in 1996.

In 2008 there were approximately 18,0002 people with HIV in Australia and around 9,5003 (53%) of these live in NSW. Although this represents a potentially small market share, we are keen to work with the insurance industry to improve access to the range of insurance products and reduce discrimination.

Understandably, insurance has not been a high priority for most people with HIV and there is limited knowledge or discussion about insurance matters in the community. Since HIV is increasingly categorised as a chronic, manageable disease, interest in a range of insurance policies may be increasing as people with successfully treated HIV expect to live into their 70s. Mortgage protection, income protection, life insurance, travel and general insurance may be increasingly sought.

Some types of insurance such as life, disability and income protection, have routinely been declined or limited to people with HIV. You are required to disclose your HIV status for these types of insurance, as the insurer needs to assess its risk. If you don’t disclose, the insurer will usually be able to avoid having to pay out a claim under the policy. Health insurance is an exception. You are not required to disclose your HIV status when applying for health insurance. There will usually be a 12-month waiting period for pre-existing conditions before a claim can be made.

The Disability Discrimination Act (Australia) allows insurers to legally discriminate against people with HIV, but only where actuarial or statistical evidence exists to support the decision.

Have your say on insurance

We will hold small discussion groups and face-to-face interviews in early 2010. We want to talk with you about your insurance priorities and the difficulties you have experienced when trying to get insurance. You can email lancef@positivelife.org.au to register you interest or to provide confidential feedback.

References:

1. Antiretroviral Cohort Collaboration, The Lancet 26th edition 2008
2. National centre in HIV Epidemiology and Clinical Research, Australian Annual Surveillance Report 2008
3. HSW Health HIV Surveillance Data 2007

Advocating for your health and welfare

Lance Feeney provides an update on the latest HIV advocacy and policy developments.

New oral health clinic in Sydney South West

A new oral health clinic has opened at Royal Prince Alfred and Liverpool Hospitals for people with HIV. The clinic is free and provides an oral health assessment, teeth cleaning and scaling. If you require ongoing treatment, you will be referred to a private dentist through the EPC Medicare Dental Program or into a local oral health service such as the Sydney Dental Hospital.

• Clinics are intended for clients of Sydney South West Area Health Services (SSWAHS).
• If you receive HIV medical services outside of this area but work or live within SSWAHS, you need to be referred into the clinic by a SSWAHS. For example, a person might see an S100 prescriber in Darlinghurst, but live in Newtown. In this situation the person should contact a SSWAHS HIV Allied Health Service such as Positive Central or the Sanctuary and request a referral to the HIV oral health clinic.
• Appointments at the clinic are available on Saturday mornings between 9am and 1pm.
• If you have a low CD4 cell count, talk with your S100 prescriber about the need for prescribed antibiotics prior to attending the oral health clinic.

Government reviews access to HIV drugs

In September 2009 the Commonwealth Government and the Pharmacy Guild of Australia initiated a review to examine the supply arrangements for drugs listed under S100 programs. S100 drugs include HIV medications and those drugs used to treat chronic health conditions. They can only be accessed though public and private hospitals. The objective of the review was to examine the supply of medications and to assess the effectiveness and efficiency of the current system and how they apply to community pharmacy.

This was an opportunity for Positive Life to advocate strongly for the introduction of more flexible HIV dispensing models that reflect current realities, particularly for working people with HIV. We strongly advocated for access to community pharmacy dispensing where appropriate and three-monthly dispensing of medications where treatment regimes are stable and supported by the doctor and patient. This position is also supported by NAPWA, AFAO and NSW Health.

An options paper has been released that includes the issues that we raised including:

• Allowing three-monthly dispensing of HIV medications in instances where the prescriber and patient agree
• Investigating options to allow community pharmacy dispensing where appropriate for HIV medications
• Having community pharmacies ‘opt in’ to HIV dispensing.

Positive Life and peak HIV organisations have responded to these options and we eagerly await the outcome from these discussions.

You can read our submission or request a copy by calling 02 9361 6011.

Ban on HIV-positive people entering US ends

US President Barack Obama announced that the ban on HIV-positive people entering the US will finally end early in 2010.

A final rule removing the travel ban was published in early November. After a statutory 60-day period, travel to the US for HIV-positive individuals will no longer be the subject of special restrictions.

Moves to remove the ban on HIV-positive non-US citizens visiting or migrating to the US started during the final stages of the Bush administration. In 2008, President Bush signed an act that repealed a law expressly forbidding HIV-positive non-US citizens to enter the US other than in exceptional circumstances. However, HIV-positive travellers were still forbidden to enter the country because of pre-existing regulations.

The US Centers for Disease Control and Prevention (CDC) approved the removal of restrictions on travel and migration to the US by individuals with HIV. Most of the responses the CDC received during this consultation were supportive of the removal of the ban.

Visit www.hivtravel.org for updates on HIV-specific travel and residence restrictions.

Sculptra approved

Yes, Sculptra has been approved by the Pharmaceutical Benefits Scheme (PBS) and is now a subsidised drug. However, the cost for the procedure to inject Sculptra has not yet been approved by Medicare. The cost for the procedure will vary depending on the doctor you go to. We are currently waiting for the decision to grant a Medicare item number by the Commonwealth Minister for Health Nicola Roxon.

Currently, if you want to get Sculptra, the cost of the injections is estimated to be about $250 per treatment. Costs may vary depending on who you see, so you need to discuss the costs with the doctor before making a decision to have the treatment.

Unless there is an urgent need to get this treatment, or you can afford to pay, we would advise waiting until a Medicare item number has been approved. We will publish updates in Talkabout.

You can find a list of approved practitioners at www.lipoatrophy.com.au

HIV Futures 6 – report available soon

The HIV Futures research program is the largest of its kind in Australia. It is designed to provide HIV, health and funding agencies and HIV-positive people with a two-yearly picture of the overall health, wellbeing and social situation of people with HIV.

A preliminary summary of HIV Futures 6 is now available at www.latrobe.edu.au/hiv-futures or from the Australian Research Centre in Sex, Health & Society on 03 9285 5382. The full report will be available in late December and you can email hivfutures@latrobe.edu.au to ensure you receive a copy of the report.

Criminalisation of HIV transmission monograph released by NAPWA

The National Association of People Living with HIV/AIDS (NAPWA) has released the monograph Criminalisation of HIV in Australia: Legality, Morality and Reality. As Hon. Michael Kirby AC CMG states in the forward, “The document addresses a subject that has engaged the national and international community for some time; but with growing urgency in recent years. It concerns the operation of the criminal law in the case of the deliberate or reckless transmission of HIV, generally during consensual adult sexual relations.”

You can download a copy of the monograph at www.napwa.org.au or request a copy by contacting NAPWA on 02 8568 0300 or freecall 1800 259 666.