Equality for patients with rare diseases – new initiative aims to improve medicine expense reimbursement of orphan drugs
Finnish Biobank Cooperative – FINBB has submitted an initiative to Minister of Social Security Sanni Grahn-Laasonen to improve equal treatment of patients with rare diseases in Finland. Should the initiative pass, companies could apply for a higher special rate of reimbursement for orphan drugs that are used in treating patients with rare diseases. Currently, the higher special rate of reimbursement can be applied only to some orphan drugs.
The Pharmaceuticals Pricing Board (HILA) can confirm the reimbursement rate for medical products that are used for treating diseases assessed as severe and long-term. The current Government Decree 25/2013 lists only 34 classes of disease groups for which the higher special rate of 100% of medicine expense reimbursement may be applied, although between 6,000 to 8,000 rare diseases have been identified. (1, 2)
The goal of the initiative is to amend Section 1 of the decree with an addition of a new class: 35th Class of Diseases that would allow for all Orphan Drugs (ODSs) to be comprehensively defined based on the European Medicines Agency’s classification. After the amendment, all patients with rare diseases could potentially have their necessary orphan drug expenses reimbursed at a higher special rate.
An earlier initiative concerning the higher special rate of reimbursement for orphan drugs was submitted to the Ministry of Social Affairs and Health already in 2009, but no progress was made at the time.
Together with Finnish biobanks and researchers, FINBB is involved in the research of rare diseases.
“A vast amount of new data and knowledge of rare diseases and orphan drugs developed for their treatment is available today. However, the Government Decree’s list of diseases with a higher special rate of medicine expense reimbursement has not been updated in decades. The Program of Prime Minister Petteri Orpo’s Government includes an entry on improving the availability and quality of treatment of rare diseases by ensuring the availability of relevant excellence in all parts of Finland. This is the right time to call for further progress on this important and meaningful matter,” says CEO Marco Hautalahti from Finnish Biobank Cooperative – FINBB.
The amendment concerning rare diseases would not affect the processes of evaluating the special rate of reimbursement for drugs, as the Pharmaceuticals Pricing Board would continue to assess the need for special reimbursement. The initiative would improve the equality of patients with rare diseases; currently, the reimbursement of a drug may depend on whether the drug was prescribed at a hospital or in outpatient care.
“I had the honor to be one of the two signatories for the earlier initiative in my previous place of employment, and I feel that this solution could bring a pragmatic solution for all stakeholders working in this important field of rare diseases. The special reimbursement of medical costs for rare diseases is not really about the money since the Finnish Government is already paying medicine expenses after a self-payment limit of approximately 600 euros per year. However, for a single patient, that sum may greatly impact their personal economy, so the amendment would improve patient equality significantly,” Hautalahti notes.
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