Statement from the RDAF | Revision of the Health Insurance Ordinance: urgent need for action from the perspective of patients with rare diseases

03.10.2022

The Rare Disease Action Forum (RDAF) would like to draw attention to the fact that the planned revision to the Health Insurance Ordinance (HIO) is a threat to healthcare provision for patients with rare diseases and is therefore not constructive. Patients without satisfactory alternative treatment options should still be able to access drugs that are not available or reimbursed in Switzerland.

The legally enshrined entitlement to high-quality healthcare is being put at risk.

The existing Art. 71 a – d of the HIO, and thus access to drugs that are not available or reimbursed in Switzerland, is particularly important to patients with rare diseases, for whom there are often no alternative treatments available. However, this revision to the HIO is a huge threat to the legally enshrined entitlement to high-quality healthcare and jeopardises timely and equitable access to innovative treatments for patients with rare diseases.

Appropriate tools and benefit determination criteria are absolutely essential.

The RDAF would like to stress that the revision should ensure equitable and high-quality treatment of patients with rare diseases in Switzerland. In particular, greater flexibility in the assessment of orphan drugs and the involvement of medical specialists would be desirable with respect to the ‘OLUtool’ listed in the notes to the revision. So this does not achieve one of the aims of the revision – which is specifically to improve equal treatment of all insured persons. Introducing the proposed additional benefit determination criteria is also not constructive with respect to orphan drugs – and only leads to a situation where even many drugs that are used today as standard and are listed in the Specialities List being unable to meet these requirements.

Do not jeopardise reimbursement of and access to orphan drugs.

It is shocking that the revision would enable insurers to influence the benefit category and thus the amount of the minimum price reductions, despite this being a clear conflict of interest. Additionally, in future individual cases will only be reimbursed if clinically controlled trials are already exist, even though it is a well-known fact that – for rare diseases in particular – evidence based on other scientific methods is recognised and often the only evidence. Also, a differentiated patient contribution is to be applied on a case-by-case basis, which would potentially lead to further discrimination against patients with rare diseases. The RDAF is calling for the specific situation of patients with rare diseases to be recognised and for equitable access to medicinal products to be guaranteed. That is why the RDAF rejects the bill in its current form and continues to advocate for constructive solutions for the benefit of patients with rare diseases.

More information about the statement can be found here.