Sweden is preparing a national strategy to improve healthcare for people with a rare disease. The long-called-for plan will tackle major care inequalities amongst the estimated half a million people in Sweden living with a rare disease.

Despite the significant number of rare disease patients in Sweden, the country is still lacking a national strategy. But that’s about to change. In mid-January this year the Swedish government commissioned the National Board of Health and Welfare to design a national action on Rare Diseases within about fourteen months.

“We have been fighting for a national strategy for 25 years. There are huge inequalities in healthcare for Swedish patients with rare conditions,” said Maria Westerlund, chairwoman of the Swedish umbrella patient organisation, Rare Diseases Sweden.

Westerlund told EURACTIV that Sweden and Malta are the only two EU countries that have not yet adopted rare disease strategies. Now, Westerlund hopes the tide is turning, as Sweden’s centre-right government is asking for a strategy with an explicit aim to reduce inequalities.

Addressing inequalities

In its mandate to the National Board of Health and Welfare, the government describes a situation where doctors’ knowledge of rare diseases is fragmented across the country and waiting times for diagnosis and treatment vary widely.

Another problem is that a rare disease patient is often referred to different specialists for diagnosis, bouncing around in the healthcare system when looking for help.

“These patients can have an enormous number of care contacts. So, we see a need for them to have equal opportunities for early diagnosis and to receive medical advice and treatment in a coordinated way on a well-defined “care chain”,” Lena Lövqvist, programme officer at the National Board of Health and Welfare, said to EURACTIV.

Together with a colleague, she is leading the board’s work to develop the Swedish strategy.

Sweden lagged behind

Sweden participated in a European project to develop national strategies for rare diseases from 2009 to 2013. But after that, the country did not adopt the draft strategy as, for example, Denmark did in 2014, Lövqvist explained.

With Denmark ten years ahead, the Board is looking at the Danish strategy for inspiration. For example, Denmark has two rare disease clinics with coordinating multidisciplinary teams, which Sweden lacks.

“But, despite the fact that no Swedish strategy was adopted, we must acknowledge that some improvements have been made anyway,” remarked Lövqvist.

She notes that in 2018, the Swedish government invested SKR 12,5 million (€ 1,1 million) to improve the spread of knowledge of rare diseases, among others.

Each of Sweden’s seven university hospitals has also established an administrative unit, centres for rare diseases, to help with coordination and knowledge dissemination. But their resources are said to be uneven, and they only provide guidance and not medical assessments of patients.

“What we really like to see is them to be given financial muscle to support and guide primary care doctors, for example. Because new and important medical knowledge about rare diseases often does not trickle down to the general practitioners or family doctors,” said Maria Westerlund.

Access to orphan drugs

Improving access to orphan drugs is also a crucial question for the patient organisation. However, this issue will not be part of the strategy. Instead, it will be prepared separately within the Ministry for Social Affairs, according to the government.

The association is also calling for better use of European expert groups on rare diseases, which are coordinated within the European Reference Networks (ERNs).

These groups are not a formal part of the Swedish healthcare system. However, the National Board of Health and Welfare would, according to Lerna Lövqvist, improve the knowledge about the ERNs among Swedish doctors and increase the possibilities of referring patients to them.

This is because Sweden alone cannot hold the medical competence for all rare diseases, which are estimated between 6,000 and 8,000.

Lena Lövqvist explained: “We need to establish easier administrative ways to refer a patient to doctors in the ERN groups. Sweden actually participates in all the existing 24 groups, which are divided by medical field.”

She also tells EURACTIV that the EU is now investing a lot of money to make ERNs work better.

Karolinska University Hospital’s example

EURACTIV also spoke to Wiktor Wackerberg, the coordinator at the university Karolinska University Hospital in Solna, near Stockholm, which has improved the referral pathways through the hospital’s participation in 20 ERNs.

“Patients with rare diseases can be referred to Karolinska University Hospital, who in turn can consult the ERN in order to discuss the patient’s case with other European experts and colleagues in the specific field. Thereby, the patient can benefit from the expertise of a wider pool of specialists,” he said.

Within an ERN in a specific medical area, difficult cases are being discussed via a telemedicine system on the European level, according to Wiktor Wackerberg.

“Even though our financial resources have been increased, they don’t cover all the work we do in terms of care, research and gathering and disseminating knowledge,“ he commented.

The new Swedish strategy must be presented by the end of March 2025 at the latest.

[By Monica Kleja, edited by Vasiliki Angouridi, Brian Maguire| Euractiv’s Advocacy Lab ]

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