Members of the Diabetes Association - an important resource for research and development
Fredrik Löndahl was 17 years old when diagnosed with diabetes type-1. That was the start for a strong interest in and dedication to reducing ignorance and prejudices about diabetes. Today he is chairman of the Swedish Diabetes Association, a patient organization that supports research and works to find causes and cures for diabetes diseases.
A stone's throw away from Stora torget in Malmö is the Administrative Court. Here Fredrik Löndahl works as chief district court judge. He is a lawyer and combines his work with the task of being the chairman of the Swedish Diabetes Association.
– It works well because the assignment is part-time. I can be flexible and work weekends and evenings and I can also read a lot when I commute between the job in Malmö and my home in Helsingborg.
With his professional background as a lawyer, he has an advantage in communicating with authorities and interpreting strict laws and regulations. And with his own experience of diabetes type-1, he is well acquainted with what it means to live with the disease. And just like many others with diabetes, Fredrik also meets ignorance and prejudice. There is a lot left to do, he believes, to raise awareness and increase the level of knowledge regarding diabetes diseases.
– We have good diabetes care in Sweden and research of international top class. However, there are still big challenges. Many live with diabetes without knowing, and we have a long way to go in order to create equal and equitable access to care and treatment. By killing myths and spreading information and knowledge about diabetes, we hope that awareness will increase. We also support research through the Diabetes Foundation and we have a continuous dialogue with the profession, says Fredrik Löndahl.
Five types of diabetes
Diabetes is the world's fastest growing widespread disease. A common estimate is that about four percent of the Swedish population has diabetes. It is a complex disease and much remains unclear when it comes to underlying disease mechanisms. However, much has happened since the hormone insulin was discovered in 1921. If you had diabetes as a ten year old in the early 20th century, you usually survived only one year after diagnosis. Since then, life expectancy has increased by over 57 years, much thanks to research and improved treatment options. But also through in-depth knowledge of the impact and importance of lifestyle factors.
– Even if we have come a long way, many questions remain to be answered. In both type-1 and type-2 diabetes, heredity plays an important role, but genetics explain far from everything. If I take myself as an example, I have a mother with type-1 diabetes and I got the diagnosis when I was 17 years old. One can easily believe that heredity plays a major role in type-1, but in fact, only a fraction of those who have a type-1 heredity actually get sick.
There are several known risk genes that increase the vulnerability of the individual to diabetes. But it usually takes a combination of heredity and environmental factors for the disease to be triggered. One hypothesis is that viral infections can trigger the autoimmune procedure that can lead to type-1 diabetes in genetically vulnerable individuals.
– We also need to learn more about the different types of diabetes. It is probably not just a disease but several and in the future we will probably get a much better classification.
In early 2018, a research group in Lund received great international attention. In an article in the reputed scientific journal "The Lancet Diabetes & Endocrinology," the research group, led by Professor Leif Groop, hypothesized that today's diagnosis and classification of diabetes is insufficient. A refined diagnosis classification with five types of diabetes was proposed instead of the current two. The main difference from today's classification is that type-2 diabetes consists of several subgroups.
– This is very important research and the new diagnosis classification increases the possibility of predicting the risk of serious complications and aids in choosing treatment, says Fredrik Löndahl.
25 million to research
Each year, the Diabetes Foundation allocates funding to researchers who carry out projects that address various aspects of diabetes. The allocation of funding differs from year to year. It is the Diabetes Foundation's scientific council that assesses the research projects based on scientific quality.
– The hope is, of course, that researchers will find the answer to the diabetes question and find a cure for the disease. However, since the research areas address related scientific issues including metabolism, nutrition, lifestyle issues, prevention, health care and nursing, we support research on all diabetes-related diseases.
In 2018, the Diabetes Foundation will spend approximately 25 million kronor on 70 different projects covering the entire medical field, from basic experimental research to patient-related research, nursing science and public health.
– In comparable terms, we do not have much research money to distribute. But we are working intensively to broaden our commitment and find new ways to strengthen patient-related research. In November, the Diabetes Association was organizing a television-broadcasted diabetes gala to raise money for research and raise awareness and knowledge about diabetes. It was very successful and enabled us to increase our research funding, says Fredrik Lundahl.
Wants to establish a diabetes hotline
The Diabetes Association has an ongoing dialogue with representatives of the profession and also supports the National Diabetes Register, which maps and develops diabetes care quality.
– It is a valuable research source. We have worked hard to supplement the register with other types of data such as PROM, patient-reported measures that measure how patients experience their disease and health after treatment or other intervention. There has been a lot of focus on hard medical parameters, but measurements of patients' quality of life and the availability of technical aids, such as insulin pumps and continuous glucose gauges that make an alarm if the glucose value becomes too high or too low, are also needed.
What clinical research questions do you think are the most important?
– We would like to see a development of better prevention methods that can reduce the risk of complications, and to find individuals at risk of being sick early. We would also like to see more effective treatment methods and drugs that are better suited for every individual.
Does the Diabetes Association direct patients to clinical studies and trials?
– We do not pass patients on to research. But in our journal “All about Diabetes”, we write a lot about research and encourage our members to participate in studies. Furthermore, our member surveys indicate that the interest in research is great. One of the main reasons for being a member is that we engage in research and focus on important issues that can improve diagnostics, care and treatment.
What actions or measures would you like to see to further strengthen patient-related clinical research in Sweden?
– We would like to have a common platform with major research actors and authorities where we can communicate research information together.
– We would also like to see that Sweden learns from Norway. There, our counterpart to the Diabetes Association has an agreement with the government and the Norwegian Directorate of Health, and receives targeted government grants to carry out certain missions. For example, they have a diabetes hotline with a chat function and a phone advisory service where you can ask questions about diabetes. They also receive grants to start motivation groups for individuals with type-2 diabetes. We would like to see a similar model in Sweden and I think the number of members would increase significantly if we could broaden our business. Today, we are forced to prioritize hard.