Patient Charter
The Macular Disease Patient Charter, a bill of rights for people with macular disease, has been developed by AMD Alliance International. Unanimously endorsed by members at their Annual Congress in May 2008, the charter is a tool designed to outline the rights of people living with macular disease. The Patient Charter encourages patients to seek the high quality of care they deserve through a better understanding of their individual rights.
Macular Disease Patient Charter
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. The MD Patient Charter is a road map for that patient life journey – 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.
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.
- 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.
Macular Disease Patients Receive Global Support
AMDAI garners Global endorsement for Macular Disease Patient Charter
Vancouver, BC, May 27, 2008 – A bill of rights for macular disease patients is now available. The Macular Disease Patient Charter was fully endorsed by the international Board when it was presented at the 2008 AMD Alliance International's (AMDAI) annual congress, held in Vancouver earlier this month.
"This is a tremendous step forward for people living with macular disease, wherever they may be around the world," said MacDonald (Don) Curran, international spokesperson for AMDAI, and himself living with macular disease. "With the Patient Charter endorsed and embraced as a guide for patient rights, awareness, diagnosis and treatment will drastically improve around the world as people advocate for the vision services and supports they so desperately need to maintain their independence "
“There is no doubt people with vision loss, including macular disease, will become more vocal proponents of the services they need in future” Curran continued. “As visually impaired seniors, we now have the ability to be very loud and clear about what we need to continue to lead meaningful independent lives!”
According to the World Health Organization, 30 million people worldwide have macular degeneration,a number that will skyrocket in future, given the aging population. In fact, approximately 500,000 people globally are losing their vision each year due to AMD.
"Awareness of this disease is starting to gather momentum in the developed world," said Dr. Keith Gordon, CNIB's Head of Research and Representative of the AMDAI. "But we still need governments around the world to make the best treatments accessible to patients who've lost their vision because of AMD, regardless of income, age or stature.”
The Macular Disease Patient Charter outlines the rights of people with macular disease in four essential areas: awareness, prevention and cure; diagnosis, treatment, and follow-up supports such as low vision rehabilitation.
To summarize the rights in the Charter: The public has the right to know about the growing incidence of macular disease in order that they may take timely and possibly preventative action, and people living with macular disease have the right to:
- publicly supported research into causes and cures;
- timely diagnosis of macular disease;
- access to proven treatments, and
- understanding of available after-care support.
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