EU court denies Swiss woman deserves reimbursement for costly neuromuscular drug

AMSTERDAM (CN) — In a ruling on Tuesday, Europe’s top human rights court held that Switzerland did not breach the rights of a woman with a rare neurodegenerative disease by refusing to pay for an expensive treatment.

The judges found that national authorities acted within their discretion when they declined to reimburse a costly drug under the country’s mandatory health insurance system.

The case was brought by B.R., a Swiss national born in 1988 who has suffered from type 2 spinal muscular atrophy since infancy. The disease led to quadriplegia, and B.R. has relied on a wheelchair, feeding tube and continuous ventilation for much of her life. Despite these issues, she earned a master’s degree and has worked as a research assistant at the University of Zurich while pursuing doctoral studies.

The applicant sought reimbursement for Spinraza, a drug approved in Switzerland in 2017 for treatment of spinal muscular atrophy. At the time, the drug was not yet included in “the official list of reimbursable medicines” that determines which medications are covered by mandatory health insurance. Her insurer, Visana, denied coverage, citing lack of scientific evidence demonstrating a “high therapeutic benefit” for adult patients in B.R.’s condition.

Swiss courts upheld the denial, concluding that individual success stories were not sufficient to override legal requirements for broad scientific validation. In 2020, B.R. submitted new expert reports and a peer-reviewed study suggesting some motor improvement in adult patients treated with Spinraza. Nonetheless, the Zurich Social Insurance Court and the Swiss Federal Court reaffirmed that under national law, reimbursement required not only case-specific improvement but also general scientific consensus.

The European Court of Human Rights concluded there had been no violation, finding that the Swiss courts had not acted arbitrarily and had sufficiently considered the applicant’s individual circumstances.

“The medication in question therefore helps to ensure more dignified living conditions for the applicant,” the court acknowledged, noting that this fell within her right to private life.

But the court ultimately found that Swiss law permits reimbursement for high-cost treatments only in exceptional cases, and only when supported by solid scientific evidence and clear individual benefit. In B.R.’s case, it concluded that these conditions were not met, citing her age and medical condition.

“The effectiveness of the medication in an individual case cannot, by itself, replace general proof based on scientific knowledge,” the judges wrote.

The court added that Swiss authorities had “clearly and understandably explained” why the applicant’s evidence still fell short of the legal threshold, even after Spinraza was added to the reimbursement list with certain restrictions.

It also found no procedural unfairness. While the Social Insurance Court did not respond separately to her convention-based claims in a revision request, the Strasbourg court said this was justifiable, as the request was inadmissible on other grounds.

While recognizing the severity of her condition, the court reaffirmed that the convention does not guarantee a right to specific medical treatment or reimbursement. Instead, the court focused on whether domestic authorities had maintained a fair balance between individual and collective interests — a standard it found had been met.

“The court considers that neither the system in place in Switzerland nor its application by the domestic authorities in the specific case appears arbitrary or manifestly unreasonable under Swiss law,” the judges concluded.

Colm O’Cinneide, professor of constitutional and human rights law at University College London, said the judgment reaffirmed the court’s deferential stance on national health systems.

“In this judgment, the European Court of Human Rights has yet again emphasized that states enjoy wide discretion in deciding how to organize and allocate resources within their national health systems,” he said.

“The court is very reluctant to intervene in complex health care decisions, or to impose particular procedural requirements on national courts in this regard. Patient autonomy and participation in medical treatment decisions affecting them is largely left to be regulated by the national authorities,” O’Cinneide said.

While the judgment was formally unanimous, a joint dissenting opinion challenged the majority’s approach. The dissenting judges argued that Swiss authorities did not sufficiently consider the convention’s protections and that the majority failed to take into account the real-life consequences of denying treatment.

“The reasoning of the majority and of the national courts in no way reflects an effective understanding of the convention guarantee of private life,” the dissenting judges wrote. They faulted the domestic courts for focusing solely on abstract scientific criteria and overlooking the concrete benefits the medication had provided to B.R.

Alicia Ely Yamin, a lecturer on law at Harvard and a global health expert, questioned whether the court sufficiently assessed the fairness of Switzerland’s health care priority-setting.

“B.R. v. Switzerland raises the pressing question of how to meet health needs fairly when all health needs cannot be met in even the wealthiest of societies,” she said.

She criticized the court for deferring to national authorities “without examining how criteria such as cost-effectiveness or special concern for the worst-off were applied,” and added that the judgment “does not consider how Switzerland defines its right to health, which is highly relevant even though the ECHR does not enshrine a right to health per se.”

With no damages awarded and costs uncontested, the ruling closes a protracted legal dispute over health care access and state discretion.