Meds, media & community
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This presentation was given by Lance Feeney (Positive Life) at the AFAO HIV Educators Conference 2010.
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Meds, media & community
- 1. MEDS, MEDIA & COMMUNITY Lance Feeney Systemic Advocacy and Policy
Editor's Notes
- This presentation reviews the work to obtain a community pharmacy option for dispensing HIV medication and includes: Policy work with the Australian Government and the Pharmacy Guild of Australia And, Work with Area Health Service HARP Managers and Hospital Pharmacies to provide a better dispensing service
- Overview 2 It will also review our work to reducing stigma and discrimination in the community by: Engaging with mainstream media and the general community to improve understanding of the social issues and demographics associated with HIV – issues that are frequently misunderstood by the public and misrepresented and sensationalised by the media And Work during WAD 2008/9 to get AAP to syndicate real life stories of people with HIV across a range of print media and increase the quality and amount of radio and other media coverage of HIV social issues
- In September 2009 AHA undertook a review of the existing supply and remuneration arrangements of 5 programs established under the Highly Specialised Drugs (S100) and the impacts that these arrangements have on community pharmacies The Review - was funded by the Australian Government and was a joint commitment of the Australian Government and the Pharmacy Guild of Australia. This process has the potential to effect a major systemic change to the supply and dispensing arrangements for S100 medicines and dispensing ARV by community pharmacies in NSW and around Australia
- S100 programs - provide access to subsidised medicines in cases where the usual Pharmaceutical Benefits Scheme supply arrangements via community pharmacies are considered to be inadequate or inappropriate. The reasons for making a medicine available under S100 program are varied and may be based on clinical considerations (e.g. the drug has special administration requirements) or operational considerations (e.g. the dug is used in specialised settings – such as HIV medicines)
- Positive Life, NAPWA and AFAO made submissions to the AHA The NSW Perspective was that: Despite significant shifts in patient and prescribing realities the system for supply of HIV medications in NSW has remained unchanged and restricted to hospital-based pharmacies. This supply situation is increasingly in misalignment with patient interests and is perceived by people with HIV as a frustratingly low systemic priority. Positive Life NSW strongly supports the introduction of a more flexible HIV medication dispensing model that provides people with a range of access options, including community pharmacies where appropriate and after hours access.
- Our case was on a number of compelling facts There are approximately 18,000 people are living with HIV in Australia in 2009. Approximately 9,000 – 10,000 live in NSW. Some 61% live in inner Sydney and 7.5% live in the outer suburbs. Around 75% of all people with HIV in NSW are using ARV therapy. 50% of all ARV scripts are written by HIV GP/S100 prescribers in general practice. This is particularly the case in Sydney. 70% of people with HIV in NSW are in full or part-time employment, a remarkable turnaround from a decade ago and a testament to the efficacy of HIV antiretroviral therapy. (60.1% full-time, 10.8% part-time). Ease of access to dispensing services is essential if optimal rates of adherence are to be maintained. Strict adherence to HIV medication regimes is crucial to successful therapy.
- Around 70% of Futures Five respondents stated that they had to travel to more than one place to collect all their prescription drugs (including both antiretroviral and other drugs). Just over 17% had to travel to three or more places. Travel issues to collect ARV medication can be problematic for people who work in locations far removed from a hospital pharmacy. Hospital-based outpatient dispensing services operate largely between 9-5 Monday to Friday. This pattern further mitigates against ease of access for working people. Positive Life is committed to supporting employment options for people with HIV and reducing and removing impediments to returning to work. For people in rural and regional NSW, monthly round trips to hospital pharmacies to collect HIV medication can require travel distances of 200 – 300 kilometers. Travel costs are significant. The need to travel to another regional centre may be necessary to maintain privacy and confidentiality in small rural settings. Approximately 50% of people living in rural areas stated that it was somewhat or very difficult for them to collect their prescriptions.
- We have also been working with the RPA HARP manager and the RPA Hospital Pharmacies RPA Pharmacy and HIV Clinic implemented a HIV consumer survey Nov – Dec 2009 Results of the survey have been used as evidence with the aim of negotiating extended hours and improved service RPA pharmacy opens Tuesday night (till 7pm) and the service is being promoted A New protocol being developed for 3 months supply of ARVs where appropriate through RPA HIV Clinic 3 month supply of ARV can sometimes be arranged through SVH Pharmacy where supported by S100 prescriber and patient and ASC is also becoming more flexible ACON and PL Eos will meet the SVH CEO and chief Pharmacists to discuss the community pharmacy/satellite pharmacy option
- In 2001/2 a Community Pharmacy Pilot was conducted. The pilot was evaluated by Urbis Keys Young. On the six measures at least 60% of respondents thought the community pharmacy either better or much better thn hospital pharmacies . The percentages preferring the community pharmacy in each case were as follows: • Communicating information and advice 60% • Methods of payment available 66% • Travel time and ease of getting there 83% • Overall quality of service 86% • Waiting time for medication 87% • Opening hours 98% However despite this successful pilot and our advocacy, progress is frustratingly slow. It is my personal opinion that the time for polite requests is over. SVH and RPA CEOs and the Chief Pharmacist at those hospitals need to understand that working people with HIV have become increasingly frustrated and pissed-off with the current inconvenient dispensing arrangements. These hospitals get a lot of HIV funding to provide a dispensing service and it is unacceptable that 6,000 working people with HIV in NSW are forced to put up with inconvenient pharmacy access.
- The second part of this presentation will review our work to reducing Stigma and Discrimination Media coverage of HIV in NSW and Australia varies in accuracy and relevance. Knowledge and understanding of the demographics and social issues associated with HIV are frequently not well understood, misrepresented and in many cases sensationalised by media. The project was funded for the second time by a $5,000 grant from SESIAHS Positive Life NSW and The Australian Federation of AIDS Organisations (AFAO) facilitated a media breakfast briefing to journalists in November 2009. The event was timed to coincide with other media projects organised in the lead up to World AIDS Day 2009. The event aimed to: Assist journalists to better understand HIV and the social context Improve the engagement of gay and mainstream media across a range of HIV issues. Encourage the use of appropriate language by highlighting issues of stigma and discrimination and how people with HIV are often negatively represented in the media. Provide participants with accurate information and resources.
- The latest information on HIV was provided by leading experts and included: the epidemiology of HIV in Australia HIV prevention in NSW Trends in HIV treatment and research HIV in the Asia-Pacific region Perspectives of two people with HIV – a heterosexual women completing a PHD and a gay man who works in the media Opportunity for the media to ask questions An evaluation made Recommendations – that future events be coordinated by national peaks agencies AFAO, NAPWA, ASHM, NCHECR and NCHSR with input from Positive Life NSW, scheduled earlier in year to coincide with a national conference – such as ASHM, and include strategies to maximise participation by mainstream media
- The other work in rlation to stigma and discrimination was in conjunction with WAD 2009 and utilized the personal stories of trained HIV Media Speakers Positive Life NSW and the STIPU WAD Project collaborated to build capacity and availability of skilled people with HIV to be interviewed by the media. Nine people with HIV were recruited and trained in 2008 and some speakers participated in media events prior to and during AIDS Awareness Week 2008. In 2009, Positive Life further developed the project with a $5,000 grant from STIPU. Aims The project aimed to: Work with the existing pool of media speakers, and add to this as possible. Provide further training and support to participants to enable the most diverse, skilled and representative range of perspectives possible. Work with relevant print and radio journalists to identify and develop opportunities to successfully place HIV related issues within mainstream media Link with the 2009 HIV Media briefing planned for September 2009.
- WAD – HIV Media Speakers Outcomes: Six of the nine speakers agreed to have their story released to the media. An interview was conducted with each speaker by a journalist. Five stories from the six interviews were selected for media release, and of these, four of the interviewees agreed to have a photograph accompany release of their story. An exclusive release of the stories and images was negotiated with the health writer at Australian Associated Press (AAP). The stories and accompanying photographs were syndicated thorough Australia media. Two speakers were also interview by the media. Good metropolitan and regional pick up was achieved
- Lessons learned Positive Life has chosen to engage with specific issues and achieve tangible gains that impact positively on the majority of people with HIV. The presentation highlights 2 of those priority areas Some issues span state and federal jurisdictions and require close collaboration with national and state HIV organisations, area health services and state and federal government agencies. Systemic advocacy and policy engagement has the potential to achieve significant benefits for the quality of life of people with HIV at a population level.
- Recommendations Continue to identify, prioritise and respond to specific issues impacting negatively on the health and quality of life of people with HIV and measure the outcome of the interventions Use existing policy networks and informal HIV policy networks to achieve policy goals Keep abreast of changing public policy initiatives and their potential impact
- I would like to thank the following agencies for their support and work on these issues: NAPWA – Policy & TON AFAO – Policy team AHS HARP Managers and staff SESIAHS STIPU ACON ASHM NCHECR NCHSR HIV Positive media project speakers