Age-related macular degeneration (AMD) in the developed world is the number one cause of sight loss in people over the age of 60. The Retina AMD Association Poland report 'nAMD - the patient pathway from diagnosis to treatment' illuminates the picture of the disease. The publication is based on a survey of patients and doctors, in cooperation with rehabilitation specialists, medical experts and association volunteers.
On the initiative of Retina AMD Poland and the Institute for Patient Rights and Health Education, the 'Keep Your Sight' campaign was also launched in March this year. The idea behind the campaign is to educate people about retinal diseases such as age-related macular degeneration (AMD) and diabetic macular oedema (DME), which can lead to sight loss.
Campaign page www.zachowajwzrok.pl allows you to learn about retinal diseases and the world as seen through the eyes of patients, the site includes a map of ophthalmology centres in Poland specialising in the treatment of AMD and DME, and advice for patients and their carers.
What is AMD?
AMD can take the dry or exudative (neovascular) form, with the dry form affecting 80–90% all patients with macular degenerative changes. Despite the fact that there are significantly fewer patients with the exudative form (10–15%), it is in their case that the disease has a far more severe and violent course.
There are nearly 190 million AMD patients worldwide. In Poland, according to the Retina AMD Association Poland, there may be as many as 140 000 people with the exudative form of this progressive, multidimensional disabling disease. It is estimated that there will be up to 14 000 new patients each year.
Risk factors include age (over 50), race (white), gender (female), family history of AMD and unhealthy lifestyles of smoking, physical inactivity or hypertension.
Macular degeneration affects the central part of the retina. As patients say, AMD is not a disease that blindingly – because a small – but still – Peripheral vision. It is primarily associated with a reduction in visual acuity. This is compounded by distortion and blurring of the image. Patients have difficulty driving, reading and even recognising faces. Blurred, fuzzy and distorted – This is what everyday life is like for patients with AMD.
„Sleepless nights and the fear of opening my eyes in the morning - can I still see?„
Patient
"Progressive sight loss is not only a reduction in quality of life, but a gradual dependence on carers."
„I'm panicking that I'm going to have to stop working, I don't know how I'm going to cope....„
Patient
These include feelings of anxiety, isolation and loneliness, as well as financial dependence. According to the data presented in the Report, the most difficult activities for nAMD sufferers are:
- reading - 75%,
- Number recognition of approaching public transport vehicles - 69.6%,
- form filling - 62.5%,
- watching TV - 37.5%,
- making bank payments - 33.9%,
- cycling - 30.4%,
- moving outwards - 26.8%,
- carrying out household chores - 25%.
Visual impairment in older age is complex. - These people become prisoners of their own homes. They are afraid to go out because they cannot see. They are often wards of social welfare centres. Some are ashamed of their disability. And yet they can be helped - says Małgorzata Pacholec, President of the Retina AMD Association Poland.
The patient pathway - from diagnosis to treatment
Prompt diagnosis in nAMD is particularly important. It is an asymmetrical disease i.e. it starts in one eye. The other sees well, so patients do not know for a long time that they are losing their sight. - They generally notice accidentally that something is wrong, for example when rubbing their eyes as they watch TV. But they often explain to themselves that maybe it's cataracts or something else, not realising that they already have advanced AMD - explains Małgorzata Pacholec. Diagnosis is delayed by queues to ophthalmologists, so the problem is already at the start.
„I am not satisfied with the treatment, if nAMD had been detected earlier and treatment had been given sooner, it may have halted the progression of the disease.„
Patient
It's a real struggle against time. - The idea is to catch the disease as early as possible and take injections under fire - says the CEO of Retina AMD Poland. The problem is low public awareness. - Our research shows that 30 per cent of Poles have never been to an ophthalmologist. And yet, various eye diseases occur over the course of our lives. Some are treatable and some are not. There are also simple tests. The simplest is the so-called Amsler test - he says. The GP should offer it to every patient over 50. Such a test can also be done at home. The self-test takes 30 seconds. - Unfortunately, nobody knows what the Amsler test is - laments Ms Pacholec.
„Poor people do not have the money for commercial appointments. They are examined by a doctor in the public health service, given another appointment in a few months' time, and when they come, it turns out that there is already a stroke in the eye and it is too late for treatment.„
Patient
– In Poland, out of 140,000 people suffering from the exudative form of AMD, the drug programme treats approx. 40 thousand patients. Some patients are treated privately. A large proportion of people therefore remain untreated. These are patients who no longer qualify for the drug programme - they were diagnosed too late. - Pacholec points out.
Treatment of nAMD
Treatment of nAMD focuses on reducing disease activity and improving long-term visual acuity. The treatment of nAMD in Poland is at a very high level. The guidelines of the Association of Polish Ophthalmic Surgeons as well as the Polish Ophthalmological Society do not deviate from world standards and include anti-VEGF drugs administered directly into the eye. - We have a well-functioning programme that provides continuity of therapy and the latest drugs and also swaps them if a patient responds poorly to one of them. Just as patients have dreamed - says the association's president.
In Poland, there is a B.70 drug programme for patients with retinal diseases, including nAMD using intravitreal injections of the anti-VEGF inhibitors ranibizumab, afliberceptib and brolucizumab. The frequency of administration of the individual drugs and follow-up examinations is detailed in the programme and is dependent on disease activity. More recently, farycymab, registered in 2022, which is a dual-mechanism therapy - it combines an anti-VEGF inhibitor and a type 2 angiopoietin - has also been used; the drug is still outside the drug programme.
- At the moment, there is no causal treatment. There is, however, symptomatic treatment. And the drugs are getting more and more modern. We have them provided and they are the latest ones, which are actually entering the programme systematically and we trust that it will be continuously expanded. We are treated according to world standards. The programme is fantastic and we should keep our fingers crossed for it and thank everyone who has contributed to it - President Pacholec is delighted.
The yellow side of the future
There have been many utopias throughout history. However, the surest vision of the future is based on facts, and they say that in an ageing society we need to prepare for the fact that more and more people will suffer from AMD and other age-related diseases. There are many ways in which we can improve the quality and safety of life for the elderly and visually impaired, such as adapting urban infrastructure through contrasting colours, providing additional light sources, technological innovations or institutional support for caring, assistive and psychosocial services. However, neither caregiver support nor even artificial intelligence will help if a large proportion of the population consists of visually impaired old people with multimorbidity. The costs are impossible to estimate. Besides, nobody has that kind of money. This is a problem that affects us all. What can we do here and now to prevent a catastrophe? - We are an ageing population and the likelihood of developing AMD will increase. But the good news is that for the exudative, rapid form of AMD we have drugs that slow down the progression of the disease. And they are really effective, meaning that its effects can be delayed very much. And such patients can retain good vision for a very long time - says Ms Pacholec.
Unmet needs of patients with nAMD
Rehabilitation. Badly priced and badly run. Nobody knows about it. Neither the doctors nor the patients. - In Poland, there are only 16 contracts for the provision of 'rehabilitation of visually impaired people', of which only two are properly managed - M. Pacholec laments. She adds that rehabilitation would be contracted more often if valuations were better. Ophthalmologists are often unaware of this benefit. - But even if they issue a referral, a patient from, for example, Rzeszów would have to travel to Warsaw for rehabilitation - he says. Meanwhile, properly managed rehabilitation allows you to live, you just have to learn it, find out what the aids are.
Optics. Highly developed and inaccessible. Patients do not know of its existence. - At the moment, people who lose their sight can select optical instruments with the right light, contrast, learn to use aids. There are special glasses for people with AMD for watching television. Their cost ranges from £600 to £1,200. Patients would probably even pay, but they do not know where to buy them, select them, order them - points out the patient representative.
Availability. AMD is a chronic incurable disease that can lead to loss of vision. Everything must be done to slow down its rate and for vision loss to be as low as possible. There is very unequal access to treatment in Poland. It is not just about small towns. An example is Warsaw, where an appointment with an ophthalmologist under the National Health Fund is a wait of many months.
„Frequent follow-up appointments, commuting, long waiting times to get into the surgery are very tiring.„
Patient
- The patients are many and the queues to the doctors even bigger. The system cannot cope, especially as AMD is not the only eye disease. Such a need is the introduction of drugs that are administered at the longest possible intervals between injections. Given the limitations of staff, the limitations of facilities, queues and, most importantly, the limitations of patients themselves – Reducing the number of visits will increase the number of patients treated regularly. This benefits not only patients, but also the system and the payer. Let us remember that active people also face the consequences of illness.
The report identifies three such challenges:
- introducing drugs that achieve the longest possible intervals between injections,
- an increase in the number of regularly treated patients, with the same limited resources of the facilities,
- reduction in the number of necessary visits - fewer injections relieve the burden on patients in the first place, reducing the number of their visits to health facilities.
In March 2023, the 'Preserve Your Sight' campaign was launched by the Retina AMD Association and the Institute for Patient Law and Health Education, with Roche as a campaign partner. The idea behind the campaign is to provide broad education about retinal diseases such as macular degeneration (AMD) and diabetic macular oedema (DME), which can cause vision loss. The campaign materials and information tools allow people at risk and their carers to learn about the disease and the world as seen through the eyes of patients.
The campaign materials and information tools allow people at risk and their carers to learn about the disease and the world as seen through the eyes of patients.
As part of the activities, a website was launched www.zachowajwzrok.plwhere information on centres specialising in treating retinal diseases in Poland, patient support materials and quick diagnostic tests are collected.
Other projects include educational workshops for patients and their families and educational meetings with experts. The aim of the campaign is to raise awareness of retinal diseases and promote the prevention of AMD and DME.