Hundreds of thousands of people living with diabetes in Europe do not have access to the treatment they need, putting their health at risk. These are the initial findings of a study by the International Diabetes Federation Europe (IDF Europe) on Access to Quality Medicines and Medical Devices for Diabetes Care in Europe.
The first of its kind in the field of diabetes, the study highlights constraints and disparities in access to diabetes treatment in 47 European countries.
Half of the countries surveyed reported stock and shortage issues. Respondents in more than one third of the countries covered also reported increasing difficulties in getting their prescription as they face delays of up to several months to see their healthcare professional, or because there are no healthcare professionals close to where they live.
The economic crisis exacerbates these issues. This is particularly true for Mediterranean countries, such as Greece and Portugal, where local healthcare centres have had to reduce their staff or have simply closed down due to austerity measures.
Overall, the study also identified a general lack of access to continuous diabetes education for people living with diabetes, their families and healthcare professionals in all the countries surveyed.
Due to quotas on subsidized or free diabetes medicines and devices, many people either have to pay for their own treatment or just do without. People with diabetes in Spain reported spending on average 300 euros per year on their diabetes medicines and devices. This is a considerable amount of money as millions of people in Spain live with a net salary of less than 1000 euros per month. In Poland people with diabetes reportedly spend around 400 euros per year for their treatment. This represents more than half of the average monthly salary, which currently stands at 654 euros. In Bulgaria, Russia and Azerbaijan, people reported having to spend well over 700 euros a year.
Within countries, differences in regional implementation of national guidelines also create growing inequalities as to who can get certain diabetes medicines or devices. "Access to diabetes care should not be a lottery," comments João Nabais, President of IDF Europe. "In more and more countries, we see that access to quality diabetes care depends on your age, where you live or even whether or not you have a job."
Inadequate access to medicines and devices has dire consequences for people with diabetes and healthcare systems, which are faced with spiraling costs. Poorly managed diabetes leads to serious and costly health complications including blindness, stroke, kidney failure and amputations.
"Unwise budget cuts in public healthcare expenditure are proving to be counterproductive. Investment in comprehensive, quality diabetes care saves lives and avoids unnecessary suffering," adds João Nabais. "It saves money too. With adequate treatment, people with
diabetes can manage their condition properly and lead long, healthy and productive lives." For most countries, the largest single element of diabetes expenditure is hospital admissions for the treatment of diabetes complications. Many of these are preventable with proper treatment and access to continuous education.
"Good health and high quality healthcare are essential for economic and social development. European governments need to ensure that health systems are more efficient and sustainable, while ensuring access to quality care for all people living with diabetes in the region. After all, we are talking about giving people with diabetes the right to be treated well," concludes João Nabais.
Access to diabetes treatment is seriously challenged by several issues in Azerbaijan. First, there is overall lack of transparency and publicly available information about what people with diabetes are actually entitled to and how medicines and devices provided by the healthcare system are selected.
In addition, insufficient or inadequate supply of diabetes medicines and devices is a recurring issue in the country. Also, a majority of people with diabetes simply cannot afford to cover the full costs of their treatment.
"According to the National Diabetes Programme, people with diabetes who register in policlinics or in national healthcare centres are provided with insulin and oral medication free of charge. However, this is often not the case in practice," says Mominat Omarova, President of the Diabetes Association of Azerbaijan. "The supply of insulin and oral medication has improved this past year. However, the problem is that the majority of resources are allocated to people living in Baku, our capital. It is very difficult for people with diabetes living outside Baku to get access to their treatment."
Even if the government has recently shown more willingness to increase public help, unaffordable diabetes treatment is a major issue in Georgia. Prices for diabetes and devices are not regulated and are reportedly quite high. Also, oral medication for people with type 2 diabetes is not covered. In general, people with diabetes have to pay for most of their medicines and devices, making it very difficult for them to follow regular and continuous treatment.
In addition, low awareness of diabetes amongst the public and politicians make change difficult to achieve.
In Italy, access to diabetes treatment is challenged because of the country's highly regionalised healthcare system. This translates into inequalities between regions and sometimes even between cities because prescription criteria for diabetes medicines and devices are different.
Most importantly, regionalisation of healthcare in the country strongly impacts the capacity of regions to cover the costs of diabetes treatment. As a direct consequence of the crisis, healthcare budgets in some parts of the country run out prematurely and healthcare authorities can no longer provide free supplies for people with diabetes.
In light of all these issues, diabetes associations advocating for the rights of people with diabetes play more than ever a crucial role. "Because of the crisis, our government wants to rationalise costs on health, and therefore on diabetes. Recently a draft bill was proposed to provide all people with diabetes in Italy with the same medicines and devices. Thanks to intense lobbying, diabetes associations limited the damage and obtained that people with diabetes get the most suitable treatment on doctor's prescription," commented Michele Sette, 21, living with type 1 diabetes.
The economic situation in Poland makes it very difficult for people with diabetes to get the treatment they need. Not a single medicine or devices, including insulin, is entirely covered by the country's healthcare system. Whether or not people get some level of reimbursement for their treatment is also highly conditioned. For example only children, pregnant women and young people under 26 get reimbursed for newer generations of insulin. "This is really sad. Every person with diabetes should have the right to get the best treatment there is," says Martyna Neumman, a 22-year-old student who has type 1 diabetes. "I'm lucky because my parents help me buy my medicines and devices, but I know many people just can't afford it."
People with diabetes also find it very difficult to get an appointment with a healthcare professional, sometimes having to wait for months. "Sometimes I feel like I'm my own doctor," adds Martyna. "When I feel bad, I count on the support and advice of other people with diabetes and my family. However, there is a lot of people who don't have that kind of support; especially older people. They just don't know what to do, what to eat, what type of treatment to use and start having serious health problems because of this lack of support."
Access to diabetes treatment in Portugal has been affected by austerity measures. Local healthcare centres have had to reduced their staff or have simply closed down. This makes it harder for people living outside big cities to access the treatment and information they need.
Another issue in the country concerns insulin pumps, a device that plays a central role in the treatment of certain people with diabetes. Portugal currently has national quotas on insulin pumps, leading to waiting lists of sometimes up to 2 years for people who are eligible to get the device.
Miguel Gaspar, 25, a personal trainer living in Lisbon, was diagnosed with type 1 diabetes four years ago. "Up to now I never had issues to get treatment. We have many associations for people with diabetes here, which also makes it easy to get information and support," he says. "However, support and proper treatment is more difficult to get outside big cities. The crisis is also making it more and more difficult for people to pay for the part of their treatment that is not reimbursed."
In Romania, access to diabetes care is primarily challenged by very tight control over prescription, used as a way to contain public spending on diabetes treatment. "In general, all diabetes medication is given free of charge. However, access to new or more modern treatment is only given after a case-by-case approval by a special diabetes medical committee," says Maria Mota, President of the Romanian Society of Diabetes Nutrition and Metabolic Diseases. "In practice, this means that very few people with diabetes have access to insulin pumps for example."
In addition, people with diabetes -either type 1 or type 2- in Romania are treated by diabetologists, i.e. specialised healthcare professionals. Usually these healthcare professionals are based in larger a city. This makes consultation harder for people living further away from urban areas.
Shortages and unaffordable treatment are the two main barriers for people with diabetes to access their treatment in Serbia. Very limited public health spending on diabetes means that prescription and reimbursement for diabetes medicines and devices are tightly controlled and highly conditioned.
"It's hard for us to accept that healthcare authorities get to decide what type of treatment we get," says Stela Prgomelja, Vice President of the Serbian Diabetes Association. "A significant number of people with diabetes cannot self-monitor because they don't get enough test strips or simply can't afford medicines that are not reimbursed," she adds. "Children and young people up to 26 with type 1 diabetes have higher reimbursement rates for their treatment. So when you turn 26, in the eyes of the healthcare system, it's like you don't have the same condition anymore."
Regionalisation is the main challenge to equal access to diabetes treatment in Sweden. Regional or local authorities are responsible for the implementation of prescription criteria and for financing certain medical devices. This inevitably leads to inequalities in access to diabetes treatment.
In this respect, a recent decision by Swedish authorities to transfer responsibility for financing insulin pumps and continuous glucose monitoring devices (CGM - devices to monitor blood-glucose levels at any time) to regions is making people with diabetes and diabetes association anxious. Right now these two devices are still free of charge if prescribed by a doctor but the diabetes community fears that once regions will have to decide on their financial coverage, fewer people will be able to receive insulin pumps and CGMs.
"The cost of using a CGM is as high as 3,100 euros per year," says Josefin Palmen, professional athlete living with type 1 diabetes. "This is something very few people can afford. However, our healthcare system now seems to think that I somehow don't need it because my blood glucose levels are good. I couldn't imagine doing sports competitions without continuous glucose monitoring. But what's more important, I need it to just be able to live my life."
In the United Kingdom, one of the main barriers for access to diabetes treatment comes from the uneven implementation of national treatment guidelines at local level.
Even if prescription guidelines are defined at national level, implementation and resources do not always follow locally. This leads to inequalities as to the type and quantity of medicines and devices a person with diabetes can get, depending on where they live. In a recent study carried out by Diabetes UK, 39% of both people with type 1 and type 2 diabetes using self-monitoring devices reported being refused a prescription for blood glucose test strips or having their prescription restricted. In such cases, people with diabetes have either to accept what they have been prescribed or buy the missing supplies out of their own pockets.
Simon O'Neill, Director of Health Intelligence and Professional Liaison at Diabetes UK, said: "There is still a very long way to go to improve levels of care for people with diabetes, both Type 1 and Type 2, in the UK. We know that our 15 Healthcare Essentials campaign, which sets out the checks and services people with diabetes should receive, has had a huge impact on people with diabetes and healthcare professionals, but the evidence shows that many people with diabetes in the UK are still not getting the care they deserve."
"In a recent survey, time and again people told us they felt 'isolated', 'abandoned' and 'alone' with their diabetes and we need to do more to support them."
International Diabetes Federation European Region (IDF Europe)