Foundation supports Charter
The Macular Disease Patient Charter was developed by the AMD Alliance International (AMDAI). The MD Foundation in Australia is a Member of the Alliance Board and sits on the executive of the Alliance and strongly supports the Macular Disease Patient Charter.
The patient charter is a bill of rights providing an essential road map for those living with macular disease written by patients, for patients. There are four essential cornerstones in this Charter: prevention and cure; timely diagnosis; universal access to proven treatment; and holistic care and support.
AMDAI’s Chairman David Herman and past Chairman and international patient spokesperson MacDonald (Don) Curran have been promoting the Charter around the world to ensure that patients have the opportunity to receive the very best care and treatment possible.
Each day world-wide, thousands of people are newly diagnosed with macular disease and the numbers are ever increasing in a dramatic way. This must be considered in health sector policy development and in public health programs.
People living with macular disease (MD) have, to the maximum extent they wish, the right to self-determination and an active, informed voice in their life journey with macular disease. There are four essential cornerstones in this Charter: prevention and cure; timely diagnosis; universal access to proven treatment; and holistic care and support.
1. Awareness, prevention and cure
People have the right to expect that:
- research into causes and cures is supported by public funding;
- public awareness programs are developed to ensure that awareness of MD as a disease with risk factors is enhanced and action can be taken to reduce risk and future incidence of MD.
2. Diagnosis
People have the right to:
- a timely and accurate diagnosis from qualified and accredited personnel.
- be treated with dignity and respect, which includes receiving timely, supportive and respectful answers to questions.
- receive, at the time of diagnosis, full and complete information about MD, about potential changes in the life journey ahead, and about how to access non-medical resources such as vision rehabilitation and counseling.
- bring caregivers and family into doctor’s appointments if they so wish.
All people are entitled to the rights outlined in this Charter regardless of age, gender, marital status, ethnicity, religion, sexual orientation, education or financial status.
3. Treatment
Persons with macular diseases have the right to:
- timely care with best possible approved or authenticated treatments.
- make an informed consent to treatment, which means they must be provided with information to ensure understanding about all approved treatment or disease management options, potential benefits, risks and side-effects.
4. Care and support
People have the right to:
- an optimum standard of care, which includes receiving information about:
- options for disease management, including follow up eye exams and on-going care.
- risk management strategies.
- low vision services and vision rehabilitation, including referral to self-help and professional services such as counseling or other psycho-social services.
All people are entitled to the rights outlined in this Charter regardless of age, gender, marital status, ethnicity, religion, sexual orientation, education or financial status.
Posted: 11 October 2008
