Response to interpellation 2025/26:457 on the government's work with rare health conditions
Translated from Swedish by AI; the translation may contain errors. The Swedish text is the original.
Summary AI, written in advance
KD argues that a national strategy for rare health conditions is being prepared and that the government's investments in precision health, primary care, and knowledge dissemination are crucial 1 2. KD believes that the state needs to take greater responsibility for pharmaceuticals to avoid long trial processes and unequal care 3. KD emphasizes that the conditions for primary care are central and that the allocated funds should also strengthen the supply of competence 3 4. S argues that Sweden is falling behind in access to orphan drugs and that unclear assessments as well as long waiting times harm patients 5. S requests a clear statement on when the strategy will be presented and argues that resources are required 5 6 7.
Written by AI in advance and may contain errors. The numbers lead to the speech a statement builds on; check against the text below.
Sjukvårdsministern Elisabet Lann (KD)
Madam Speaker! Adrian Magnusson has asked me when I intend to present the special strategy for rare health conditions and how I intend to ensure that the reinforced healthcare investment of 450 million kronor will help people with rare health conditions.
In the Socialstyrelsen's proposal for a national strategy for rare health conditions, which was presented on May 13, 2025, several focus areas are proposed, such as early diagnosis, better coordination of healthcare interventions, and increased knowledge about the health conditions. The proposal is currently being prepared within the Government Offices.
In order to already now improve knowledge of rare health conditions within healthcare, Socialstyrelsen has been tasked to carry out targeted interventions with a focus on information and knowledge dissemination regarding rare health conditions (S2025/01639). The assignment shall be reported by December 31, 2026, at the latest.
In addition to this, the government is taking concrete measures within the framework of the reinforced healthcare initiative to support operations that play a central role for people with rare health conditions. On 30 April, the government decided on reinforced support of 16 million kronor to the country's six regional healthcare Centers for Rare Diseases. The purpose is, among other things, to strengthen these operations' ongoing work with knowledge dissemination regarding rare health conditions, to provide guidance to both patients and healthcare personnel, as well as to provide support to relatives.
Parallel to this, a broader development work is underway within healthcare in several areas, which is expected to strengthen care even for patients with rare health conditions. Among other things, a transition to patient-centered care is underway, where the goal is that healthcare shall to a greater extent be organized and conducted based on the patient's needs and circumstances.
The government has also, over several years, invested in introducing precision diagnostics in healthcare through targeted support to projects run by Genomic Medicine Sweden. The government's commitment to precision health has been strengthened from this year onwards, and work is currently underway to develop the structures for long-term state support that shall accelerate an equitable and equal implementation of precision health throughout the country.
Within the framework of this initiative, the government has during 2025 and 2026 paid out a total of 14.5 and approximately 9.4 million kronor respectively to a national implementation project for a new method regarding precision diagnostics for patients with rare health conditions. The funds also support national and international work regarding precision diagnostics for children with undiagnosed rare health conditions involving malformations or intellectual disabilities. Through these initiatives, the possibilities for earlier and more accurate diagnoses for these patients are strengthened, which creates conditions for faster access to accurate treatments.
I would like to conclude by thanking you for the question. The Government sees a need for a developed and coordinated effort in this area. The measures currently being implemented aim to meet the often complex needs that people with rare health conditions have. This shall be achieved through increased knowledge in healthcare, better coordination, and clearer support.
Adrian Magnusson (S)
Madam Speaker! We are now discussing rare health conditions and the government's work regarding those types of issues.
Rare health conditions are something that 500,000 people in this country have, and it is a phenomenon that, of course, affects the lives of these 500,000 people in many ways. These are people who in no way have caused their conditions themselves, but rather they are often congenital diseases or diseases that arise later in life and are therefore very rare.
An important part of this discussion is, of course, for many in this group, the access to medicines. It can be stated that Sweden is lagging behind when it comes to the availability of orphan drugs, as they are called. The Commission for Innovative Orphan Drugs describes it as a troublesome situation. According to WAIT, only 19 of 66 orphan drugs are available in Sweden, and we have the same availability as EU countries such as Hungary and Romania. In Denmark and Germany, however, the figure is significantly higher.
As I just said, there are people behind the statistics for rare health conditions. I have been particularly affected by a case at home, namely Måns Rundqvist from Ystad, who suffers from Duchenne muscular dystrophy. He has, at times, lost access to his medication Translarna, and he is only one example. Many of these people lose access to their medications, because they are expensive medications that can cost a lot for the regions.
The assessments being made are difficult to explain. There are pharmaceutical councils in the regions whose assessments are difficult to explain, and the NT Council, which also makes decisions in these types of matters, is often subjected to criticism. It is the same there: unclear assessments and long waiting times when it comes to making decisions on orphan drugs. As I said earlier, the medicines are often the very most decisive for this group so that they can live a bearable life despite the rare health conditions they live with.
The Riksdag passed a decision in 2022 regarding a notification to the government on improving access to orphan drugs and on the need for a strategy for rare diseases. It is thus four years since then. In 2024, the government tasked the agency TLV with strengthening access to medicines for persons with rare diseases. TLV then made the assessment that this only applies to the very rarest diagnoses.
TLV introduced a new payment model in January 2025. This, as has been said, concerns medicines that can cost the regions very much. This has occurred in some kind of broad agreement that one needs to handle the issues surrounding medicines and surrounding rare health conditions. The Government has in various contexts signaled that these issues are important and that great weight is placed on them.
It is not the first time that the Minister for Health and Social Affairs has been asked when a strategy can be presented to the Riksdag, and we do not receive any clear answer today either. I and those listening to this debate are only told that this is being prepared in the Government Offices. That is a response one sometimes receives from the government, and so also today.
It has also been announced by the government that 450 million kronor are being allocated regarding the issue of rare health conditions.
I am a bit confused by the answer the minister gives here today. Is it 16 million kronor of these 450 million that go to specifically rare health conditions, or are there more funds that the government will provide an announcement on later? I would have liked a clarification regarding that.
I will also actually pose the question: When can this Riksdag and all the people living with rare health conditions expect to receive an update regarding the issue of a strategy concerning these issues? I believe it is very much anticipated by very many people.
Sjukvårdsministern Elisabet Lann (KD)
Madam Speaker! Thank you, the interpellor, for an important question! It is a pressing issue for the government, and that is also why things are happening in the area.
As the interpellor surely knows, the EU Commission has already since 2009 – I believe it was – recommended that all EU countries have a strategy for rare health conditions. The Social Democratic-led government thus had two mandates to address the issue, and nothing happened.
Things are happening, and no one is more frustrated than I am that we are not finished yet. I hoped that we would have been by now.
I believe there is actually understanding in the chamber that it is difficult to say when the preparation will be completed, because a matter is being prepared for a reason. I do, however, dare to say that it is in the near future. This is nothing that has been hidden away or forgotten, but there is an active work ongoing, and the government hopes to be able to proceed to a decision shortly.
What has happened in the pharmaceutical area is important – these are important steps in the right direction. I just want to remind that pharmaceutical issues fall under a different state council, so for discussion on that issue, I propose an interpellation addressed to the Minister for Social Affairs.
I would like to take the opportunity to say that we have also decided on a larger pharmaceutical investigation, which will look at the state's responsibility to address the problems raised by the interpellor regarding the processes that exist today with the NT Council, among other things.
Regarding the budget item of 450 million, it is not actually stated that the entire amount should go specifically to rare health conditions or to this strategy. We are not even at the point of a decision on the strategy, and we are nearly halfway through the current year. However, funds have been paid out for work on rare diagnoses in several rounds. It concerns 16 million to the country's six Centers for Rare Diagnoses. It concerns 9 million kronor to Rett center, and there are funds remaining to be paid out in the future, which I ask to return to.
When it comes to this patient group, I wish for us to broaden the perspective a bit and not focus on funds allocated specifically for rare diagnoses, because it is inherent in the nature of the matter that it is very difficult to hit the mark with money for 8,000 diagnoses.
The entire problem with having a rare diagnosis is that knowledge is unequally distributed across the country and that it is difficult to get as good help as one gets when one has a diagnosis that there is more knowledge about and where there are more who have the competence to handle this. It is therefore important to see that the efforts we make in the field of precision medicine truly reach this target group.
What we do when we also strengthen person-centered care and primary care is also completely crucial to be able to ensure continuity and to secure the conditions for local care to receive the right support even if the highest level of expertise were to be in some other part of the country. By improving the work with consultation in primary care, these patients can receive much more help. There are therefore large parts in the initiatives we are making to strengthen primary care and the field of precision medicine that are completely crucial for what care this group receives.
Adrian Magnusson (S)
Madam Speaker! I thank the Minister for the answer.
Even though the Minister does not want to talk about medicines, I still believe that the Minister was onto something important when she, in her contribution, raised primary care, namely that the issue is broad and that it affects healthcare as a whole. I then argue that it also involves the issue of medicines, even though I can, of course, understand that the issue concerns primary care. It is important for these people – of course for everyone – that those within healthcare are met by people who have some knowledge about the rare health condition they have.
We have read examples of people who are forced to spend a lot of time every time they visit healthcare by explaining their rare health conditions. It must in many ways be incredibly frustrating.
I do not intend to engage in any kind of polemic about what could have been done when and where, but I can state that Sweden in 2009 had a bourgeois government and that it sat until 2014. Then we have had a bourgeois – if we can call it that – government since 2022. If we are going to throw different mandates at each other, I can throw that ball back in that case and say that the bourgeois government could have acted in 2009.
I do not think we should get into too much polemic regarding who could have done what and when, but instead, I state that the issue is important for a large group of people. Therefore, it is gratifying to hear that the government, based on what the minister said in his statement, appears to be close to making a decision on a national strategy. I noted that the words "soon" and "decision shortly" were used. We can well hope that is also the case, otherwise we will certainly have reason to have more interpellation debates on the issue. I know that I am not the first Member of Parliament who has raised an interpellation on the issue.
This is a broad question. We are not going to talk about life science today, but for that sector, it is important that Sweden acts in these types of issues, that we have a national strategy and that we are at the forefront. We are not going to talk about pharmaceuticals – the minister does not want to talk about pharmaceuticals at least – but it is worrying that we are also lagging behind in the EU in the availability of orphan drugs. This obviously means that other parts of the Swedish healthcare sector are also lagging behind.
It is well known that the 450 million in their entirety are not to go to rare health conditions. Then the minister listed a number of millions that have been paid out. I perceived it as that the minister is to return on whether there are additional funds to pay out or to add to rare health conditions of the 450 million kronor. I do not know if the minister intended to return in a later contribution or if the minister intends to do so in the future.
The Minister could clarify how much of the money is to be allocated to rare health conditions. That would be desirable. It is something that not only a Social Democratic Member of Parliament in the Swedish Riksdag is requesting, but several groups have noted the government's initiative and want to know more about how much of the 450 million kronor is to be spent on rare health conditions. It is about trying to make these people's lives a bit more bearable.
I can also note that the Care Responsibility Committee has also raised the issue of pharmaceuticals. It is difficult to avoid the issue of pharmaceuticals, but I understand that the work in the government is not structured that way. It is, however, difficult to dodge the question that specifically pharmaceuticals for the treatment of rare health conditions need to become more uniform. It is something we need to reflect on, that is to say, how we overall can make care better for people who suffer from this type of health condition. It becomes a bit difficult to dodge the pharmaceutical issue, but I understand that the minister also wants to raise the primary care issue because it is so important.
Sjukvårdsministern Elisabet Lann (KD)
Mr. Speaker! I just want to clarify that I have no objection to talking about pharmaceuticals. Pharmaceuticals are an important part of healthcare and the conditions for healthcare to manage and treat patients, but I want to show respect for the division we have.
I refer again to the large pharmaceutical investigation appointed for the reasons the interpellator highlighted, with the conclusions of the Healthcare Responsibility Committee. There is a great consensus and agreement among the parties in the Riksdag that the state needs to take greater responsibility for pharmaceuticals so that we do not end up in long trial processes, which also contribute to unequal care in Sweden. This is an important initiative, and I look forward to what the investigation will conclude, which will be of great importance for the patient groups.
I still want to point out that it was the interpellor who started throwing years in the face! It is quite true that we had a conservative government when the commission first pointed out that the countries should develop strategies for rare health conditions. An attempt was also made, where the National Board of Health and Welfare presented something as early as 2012 that the Riksdag was not satisfied with. There has surely been an ongoing improvement process.
At the same time, it is important that we do not give the impression that the work to improve care for people with rare health conditions is dependent on a strategy. Sweden is at the forefront in many respects. There are also other countries that stand out as successful, such as France. I believe they are on their second, possibly third, strategy, and it has been a successful strategic work. But there are also other countries that are far ahead, for example the Netherlands, which have come a long way with person-centered care.
Sweden is at the forefront of precision medicine – both in diagnostics and treatment. This is something that is happening regardless of whether the strategy is adopted or not. The work to achieve an equitable implementation in the country is ongoing regardless of when we make the decision.
Naturally, it is of great value that we have a strategy that provides clearer guidance to the healthcare actors. But we must not believe that it is only what is written in a strategy that matters. I want to emphasize once again that the primary care's conditions to meet patients and offer high continuity and a better ability to also utilize the best knowledge, regardless of where it happens to be in the country, requires precisely continuity. Otherwise, one breaks down the structure around a patient. It is completely central for us to be able to offer better care to the patient group. We do not achieve that with a strategy, but we achieve it by actually succeeding in making the transition and dimensioning primary care so that it can take its primary care responsibility and offer a fixed doctor contact, especially to the group of patients with special needs.
Adrian Magnusson (S)
Mr. Speaker! I want to clarify once again that it is not just a Social Democratic member of the Swedish Riksdag who is requesting a strategy, but it is being done by many organizations that work with this group. A strategy is being requested and it is argued that there is a great need for such a strategy. I want it to be clear to everyone listening to the debate that it is not my own invention that a strategy is needed.
I do not think that those who are watching the debate or those who are in the patient group consider that a strategy is enough, but it obviously requires work in primary care and in other parts of the healthcare – not least in the issue of pharmaceuticals. It is not finished there.
Something that is also required is resources. The Government has indicated that a part of the 450 million kronor shall go to the work with rare health conditions. We have today in the chamber received notice that 25 million, if I have counted correctly, shall go to the work with rare health conditions. The Minister has said that she will return on whether more funds shall be allocated, even though it has been clear from the beginning and also today that it is not about all of the 450 million kronor.
I am a bit unsure whether the Minister intends to respond today or at a later time. If the Minister intends to respond today, she has a chance in her next two-minute speech to provide information regarding a few more of these millions. If the Minister does not intend to respond today but at a later time, I would appreciate it if the Minister could clarify that in her next speech.
I thank you for a good debate. We will surely have reason to return to the question.
Sjukvårdsministern Elisabet Lann (KD)
Mr. Speaker! I would like to thank the interpellor for an important interpellation. I share the commitment to reach a decision on a strategy but, above all, to improve care for very many patients who often feel very lonely.
These patients often, as has been raised here earlier, end up in situations where they become the primary expert on their condition, because the knowledge and competence are not present in the care they encounter in their everyday lives. They are forced to a large extent to have many different contacts, not least within healthcare but also with other societal functions. It requires a very special logistics in existence.
I would like to thank again for the question being raised. It is important. Because it concerns so few in each situation – one is so rare – these people are easily forgotten when we talk about large healthcare issues and large patient groups. Therefore, I appreciate the debate.
I want to clarify that I will return at a later time regarding how the remaining funds will be distributed. But it is important to point out that it has never been stated that the entire sum would go to the strategy, but it is to go to a number of different things. We have also paid out funds to strengthen the competence supply in healthcare, which is also crucial for this group.
With that, I would like to thank you for an important debate.
Source: The Swedish Parliament. The speeches come from the open data of the Riksdag, translated into English by AI, which may contain errors.