Macular Disease Foundation Australia presents submissions to government aimed at improving quality of life for people living with a macular disease, their families and carers. Read archived submissions here.
During 2015, the Foundation made representations on behalf of the macular disease community:
MBS Item: Optical Coherence Tomography (OCT) Reimbursement
The Foundation made recommendations to the Federal Government regarding a new Medicare Benefits Schedule item, which would allow consumers to be reimbursed for Optical Coherence Tomography. OCT is a non-invasive imaging test that uses light waves to take cross-sectional images of the retina. These images are used by eye health professionals to detect, diagnose and provide treatment guidance for eye diseases including macular degeneration and diabetic eye disease. The inclusion of OCT on the Medicare Benefits Schedule has been an ongoing campaign for Macular Disease Foundation Australia.
Independent Review of the Operation of the National Disability Insurance Scheme Act (Commonwealth)
The Foundation highlighted concerns to the Federal Government Department of Health regarding access to the National Disability Insurance Scheme for people who acquire a disability such as vision loss after the age of 65 and for those with early stage vision loss. The Foundation’s aim is to ensure people who acquire a disability after 65 years of age and those with early stage vision loss receive appropriate access to affordable treatments as well as low vision technologies and services that support independent living.
Private Health Insurance
The Australian Competition and Consumer Commission’s (ACCC) annual report to the Australian Senate on anti-competitive practices by health insurers and providers in relation to private health insurance (Oct 2015), stated “there are a number of market failures in private health insurance and there are increasing policy limitations and exclusions leading to an increased risk of unexpected out-of-pocket expenses and general dissatisfaction with the system”. The Federal Minister for Health announced a review of private health insurance with Professor Graeme Samuel AC appointed to conduct a series of industry and consumer representative roundtables to identify reform options to enhance the value of private health insurance for consumers. At a consumer roundtable the Foundation highlighted aspects of a ‘broken system’ that requires urgent fixing, especially with respect to injections for wet macular degeneration and access to low vision aids and technologies.
Pharmaceutical Benefits Advisory Committee (PBAC) Guidelines
The Federal Government Department of Health reviewed the Pharmaceutical Benefits Advisory Committee Guidelines to ensure assessment processes were consistent, transparent and continue to address contemporary methodological issues associated with the Pharmaceutical Benefits Scheme. The Foundation recommended to the Department of Health a range of amendments be included in the Pharmaceutical Benefits Advisory Committee Guidelines to support access and equity to treatment for macular diseases.
National Priorities for Clinical Practice Guidelines 2015
The Foundation made recommendations to the Australian Commission on Safety and Quality in Health Care regarding the establishment of the National Priorities for Clinical Practice Guidelines 2015. Concerns were voiced because although clinical practice guidelines were included for diabetic retinopathy, there were no guidelines for age-related macular degeneration.
Chronic and Complex Health Conditions through Primary Care
The Primary Health Care Advisory Group investigated and reported on best practice in prevention and management of chronic conditions in primary care. As part of this process, the Foundation participated in a survey investigating options to provide better care for people with complex and chronic illness, such as age-related macular degeneration and diabetic eye disease, including funding options, and improved connection between primary health care and hospital care.
Medicare Benefits Scheme Review
September & November 2015
The Federal Government announced a comprehensive review of all Medicare procedures to assess their evidence base, relevance and costs. This review included intravitreal injections for the treatment of some macular diseases. At consultation meetings held as part of this review process, the Foundation highlighted the ongoing need to provide affordable access to effective treatments for macular diseases. The Foundation voiced its concern that attempts to reduce costs may result in ‘cost shifting’ with additional financial burden being placed on patients.
Attorney General’s National Interest Analysis on the Marrakesh Treaty
The Marrakesh Treaty aims to provide people around the world who are blind, visually impaired, and otherwise print disabled with equal access to information and communications, enabling them to exercise the right to freedom of expression and opinion. The Foundation reviewed, and strongly supported, the Federal Government’s intended legislative changes to ratify the Marrakesh Treaty when it was released for consultation.
Home Care Packages User Rights Consumer Directed Care Amendments
The Foundation recommended amendments to Home Care Packages operating on a Consumer Directed Care basis, (implemented 1 July 2015), which enable consumers to choose, in partnership with providers, the services they acquire. The submission aimed to ensure fairness and equity for all consumers accessing the program, taking into account cultural, linguistic and religious preferences and ensuring those lacking decision making capacity had access to representation.
Drug Utilisation Sub Committee (DUSC) Review of Anti-VEGF Treatment
The Foundation provided the Drug Utilisation Sub Committee (DUSC) of the Federal Government’s Pharmaceutical Benefits Advisory Committee with information related to anti-VEGF treatment for macular degeneration. This advice added to DUSC members’ understanding of treatment protocols, outcomes and challenges faced in treatment delivery.
National Diabetes Strategy Consultation Paper
The Foundation made recommendations to the Government for a national diabetes strategy. These related to public and professional awareness and education surrounding diabetic eye disease (including awareness of low vision as a significant cause of depression), as well as access to support services and affordable treatment. The Foundation recommended improved referral pathways between GPs, optometrists, ophthalmologists and low vision agencies, and also recommended a specific Medicare Benefits Schedule Item number for anti-VEGF treatment of diabetic macular edema.
The Foundation recommended to the Australian Building Codes Board (ABCB) that building access is improved for people with low vision or blindness, including access to emergency egress.
Community Home Support Programme
The Foundation made recommendations to the Federal Government regarding the proposed Community Home Support Programme (CHSP) fees policy, highlighting the risk that, under the proposed policy, some consumers may experience an increase in fees for the services received.
Additionally the Foundation recommended amendments to the CHSP Programme Manual 2015, Guidelines and CHSP Good Practice Guide to include specific reference to low vision assistive technology for people with age-related macular degeneration. These recommendations were accepted and implemented.
The Foundation’s aim is to ensure older people with a disability, in the aged care system, have the same access to affordable low vision assistive technology as younger people with a disability in the National Disability Insurance Scheme. This recognises that assistive technology maximises independence and autonomy for those with low vision.
Expert Review of Complementary Medicines Regulations
The Foundation made a submission to the Therapeutic Goods Administration’s review of Australian regulatory guidelines for complementary medicines and was invited to meet with the expert panel comprising Professor John Horvath AO, Emeritus Professor Lloyd Samson AO and Mr Will Delaat AM. Professor Paul Mitchell and Foundation representatives addressed the expert panel on key issues related to access to complementary medicines with level one evidence.
NDIS Tier 2 Policy Framework on Information, Linkages and Capacity Building (ILC)
The Information, Linkages and Capacity Building framework aims to improve access to a broad range of services, via referral, for all people, regardless of age or level of disability. Included within this framework is the funding of episodic specialist assessments, specialist disability training and some assistive technology. The Foundation advised the Federal Government on the impact ILC will have on people with vision impairment or blindness, and requested greater detail of the proposed framework with regard to consumer eligibility and services provided within the ILC. The Foundation voiced concerns that adequate funding had not been allocated to ILC and that consumers may be required to make a co-payment to access services.
National Disability Insurance Agency Assistive Technology Discussion Paper
The Foundation voiced concerns regarding the National Disability Insurance Agency’s (NDIA) procurement policy, which threatened to limit access to the most appropriate assistive technology and increase costs for consumers.
Ozurdex for Pseudophakic Diabetic Macular Edema (DME) Patients
The Foundation submitted comment to the Pharmaceutical Benefits Advisory Committee (PBAC) regarding the proposed listing of Ozurdex implant for diabetic macular edema in pseudophakic people (those who have had cataracts removed). In February 2016 the Foundation submitted a second submission supporting the Pharmaceutical Benefits Scheme (PBS) listing of Ozurdex, highlighting the benefits for particular patient groups.
2015-16 Pre-budget Submission
The Foundation proposed Federal Government funding for its Helpline, support services, education and awareness campaigns, aligning its programs with the Commonwealth Government’s National Framework for Action to Promote Eye Health and Prevent Avoidable Blindness and Vision Loss. The submission highlighted that the Foundation’s services and programs reduce the incidence and impact of macular disease and in doing so, generate significant savings for the nation.
Accessibility to Information
The Foundation successfully advocated for improved readability of forms and statements generated by an Australian energy provider with the aim of achieving greater accessibility of documents for people with low vision.
Low Vision Aids and Technologies
The Foundation advocated on behalf of its constituents for improved benefits for low vision aids and technology from private health funds. Through a consumer-focussed campaign, the Foundation also improved awareness of those private health funds that provide appropriate benefits.
Senate Selection Committee on Health
The Foundation presented a comprehensive submission to the Senate Select Committee on Health that addressed numerous significant issues that affect consumers with low vision including:
- Access and availability of public hospital outpatient treatment
- Out-of-pocket treatment costs
- Health promotion, prevention and early intervention for macular disease
- Eye checks in residential aged care facilities
- The need for patients with diabetes to have two-yearly checks or annual checks if there is evidence of retinopathy.
- Gaps in the ophthalmology workforce
- Access to low vision aids and technologies expenditure.
Commonwealth Home Support Programme (CHSP) Key Directions
The Foundation made recommendations in the development of the CHSP. These recommendation included recognition of "People with disability" as a special needs group in the Aged Care Act 1997, the establishment of an aged care and disability care system interface as a key design element, increasing the goods and equipment (including low vision aids) funding cap from $500 to $1,000, and developing an appropriate funding mechanism for aids and equipment costing over $1,000.
Senate Inquiry on out-of-pocket costs in Australian healthcare
The Foundation provided a submission to the Senate Inquiry investigating the impacts of out-of-pocket healthcare costs in Australia. The Foundation’s submission included recommending Medicare reimbursements for anti vascular endothelial growth factor (anti-VEGF) treatment drugs, ocular coherence tomography (OCT) scans, supplements conforming to the Age-Related Eye Disease Study 2 (AREDS2) formulation, improving rebates for optometry eye check-ups, greater financial support for long distance travel to treatment, and further consideration to impact of the proposed $7 GP co-payment.
2014-15 Pre-budget Submission
The Foundation provided a submission that comprehensively detailed the need for the Commonwealth Government to support the Macular Disease Foundation Australia Helpline in the 2014-15 Budget.