Epidermolysis Bullosa Enters Portugal's Special Medicine Rules for the First Time, and the Dressings Become Free at SNS Counters in December

An ordinance published in a supplement to Monday's gazette creates a single special funding regime for two rare skin diseases, and for one of them it is the first such regime Portugal has had. Portaria n.º 433-B/2026/1 covers patients with ictiose (ichthyosis) and patients with epidermólise bolhosa (epidermolysis bullosa), and it sets out, annex by annex, exactly which creams, dressings, needles and painkillers the state will pay for and where each one may be collected.

The practical effect for epidermolysis bullosa patients is the larger of the two. From the day the ordinance takes effect, silicone contact dressings, silicone foams, silver antimicrobial dressings, hydrogels, sterile needles, sterile compresses, saline, antibacterial solutions, silicone adhesive remover, long-lasting barrier creams, emollients, ocular lubricants and healing creams are dispensed at units of the Serviço Nacional de Saúde (National Health Service) with no charge to the patient. The cost sits with the SNS unit where the prescription was written.

INFARMED, the medicines authority, publishes a table of every exceptional co-payment regime in force. Ichthyosis appears on it twice. Epidermolysis bullosa does not appear on it at all.

What each annex covers

The ordinance splits the two diseases across two dispensing channels, which produces four annexes.

• Annex I, ichthyosis, community pharmacy. Keratolytic and antipsoriatic medicines, both topical and systemic, and systemic acne medicines. These are co-paid at Escalão A, the top co-payment tier.
• Annex II, epidermolysis bullosa, community pharmacy. Paracetamol, and the non-steroidal anti-inflammatories celecoxib, ketorolac, diclofenac and ibuprofen. Also Escalão A.
• Annex III, ichthyosis, SNS units. Topical formulations containing urea, salicylic acid or glycolic acid, plus fatty creams and oils. Free to the patient.
• Annex IV, epidermolysis bullosa, SNS units. The dressing and skin-care list above, grouped by what each item is for: protection and prevention, exudate management, debridement, infection control, blister management, cleaning, prevention and healing. Free to the patient.

Escalão A is 90 percent of the retail price, or of the reference price where the medicine sits in a homogeneous group, under Article 35 of Decreto-Lei n.º 118/2026. So the community-pharmacy half of this regime leaves a co-payment of roughly a tenth of the price, while the SNS-unit half leaves nothing to pay.

Two conditions run across all four annexes. Only dermatology specialists working in SNS health units may prescribe these items, and the prescription has to carry an express mention of the regime. And the dispensing channels are not interchangeable: what is in Annexes I and II comes only from a community pharmacy, what is in Annexes III and IV only from an SNS unit.

The regime that came before it

Portugal has funded ichthyosis treatment on an exceptional basis since 2014. A despacho published that April lifted three groups of skin medicines from Escalão C, where the general table puts them at 37 percent, to Escalão A at 90 percent, for ichthyosis patients collecting them at a community pharmacy. Portaria n.º 36/2018 then added the topical side: urea, salicylic acid and glycolic acid formulations plus fatty creams and oils, dispensed exclusively through the pharmacy services of SNS establishments and free to the patient.

Both of those instruments are revoked by Monday's ordinance, which folds their content into the new structure and extends the same architecture to epidermolysis bullosa. The substance of the ichthyosis regime survives the move largely intact. What is new is the second disease.

The legal peg is Article 41 of Decreto-Lei n.º 118/2026 of 17 June, the decree that rewrote the Sistema Nacional de Avaliação de Tecnologias de Saúde (National Health Technology Assessment System) and came into force on 1 July. Article 41 lets the health ministry establish special public-availability regimes by ordinance, for particular pathologies among other categories, and requires each ordinance to name the technologies covered, the co-payment conditions, the prescribing and dispensing rules, and the medical specialty allowed to prescribe. The 2026 decree also carried an express transitional rule, in Article 60(4), keeping the older exceptional regimes alive until they were replaced or revoked. This is the first replacement.

Ninety days, and a guidance document

The ordinance does not take effect on publication. Article 6 gives it 90 days, which on the face of the text puts it in force on 20 December 2026. That is a long runway for a measure whose main content is a list of dressings, and the preamble hints at what the time is for: it records the need to revise the Direção-Geral da Saúde clinical guidance on epidermolysis bullosa, so that prescribing and use of the newly covered items match the available evidence.

Two further mechanics are worth noting. The regime may also take in prescription-only medicines with a therapeutic indication for either disease that have already had a favourable public-availability decision, without a further ordinance. And adding or removing an item from the covered list afterwards does not need a new ordinance either: under Article 41(4) of the 2026 decree it is done by deliberation of INFARMED's board, published on the authority's own website. In practice that means the operative list for these two diseases will live on infarmed.pt rather than in the gazette.

The ordinance was signed on 21 September by the Secretary of State for Health, Ana Margarida Pinheiro Povo, under powers delegated by the health minister.

What this means for you

• If you or a family member has epidermolysis bullosa, the prescription has to come from an SNS dermatology consultation. A private dermatologist cannot open this door, however good the diagnosis. The ordinance restricts prescribing to dermatology specialists in SNS units, and requires the regime to be named on the prescription.
• Do not expect the change before Christmas. The 90-day clock means the dressings and creams in Annexes III and IV are not collectable under this regime until late December. Until then the existing arrangements, whatever they are in your ULS, still apply.
• Check where each item is meant to be collected. Presenting a prescription for an Annex IV dressing at a community pharmacy will not work, and presenting one for an Annex II painkiller at a hospital pharmacy will not either. The split is in the ordinance, not in local practice.
• The list will change without another gazette entry. INFARMED's board can add or drop items by deliberation published on its site, so the website, not the ordinance, is the place to check what is currently covered. Our guide to how pharmacies work in Portugal covers the prescription codes you will need at the counter.
• Rare-disease coverage is expanding through this exact mechanism. Portugal's rare-disease registry added 155 conditions in 2025, and the special-regime route in Article 41 is how a codified disease turns into funded treatment. If a condition in your family is on the registry but not on INFARMED's regime table, that gap is the thing to raise with the specialist.

The wider context is a system under cost pressure. Patients paid 571 million euros at Portuguese pharmacy counters in the first seven months of 2026, and the state has been tightening the terms elsewhere, including a change from October that limits free medicines for low-income pensioners to generics and reference prices. Against that, a four-annex ordinance for two rare diseases is a small line of spending. For the households it reaches, it is the difference between buying dressings weekly and not.