The he alth fund does not pay for the treatment of patients with a rare disease

The he alth fund does not pay for the treatment of patients with a rare disease
The he alth fund does not pay for the treatment of patients with a rare disease

Only about 100 Bulgarians have been diagnosed with the rare disease hidradenitis suppurativa, but the probable number of those affected by this severe, chronic and painful disease is much higher, since according to data from the World He alth Organization, about 1% of the adult population suffers from it. At the same time, the He alth Insurance Fund does not in any way cover the treatment of these patients.

These data were presented today at a press conference in the capital, where the "Open to the Wounds" Association presented its activities and priorities. The patient organization, with the partnership of the National Alliance of People with Rare Diseases, launched a broad information campaign, the main goal of which is to familiarize the public with the disease. Hidradenitis suppurativa is characterized by the appearance of inflamed boils, usually located around the armpits and groin, which leads to constant pain and greatly impairs the patient's quality of life. Persistent skin infections pose serious he alth risks to those affected. The main risk factors for the occurrence of the disease are smoking and obesity, and 30% of patients have a hereditary predisposition.

“In our country, there is no clinical path for diagnosis and treatment of these people, and they suffer a lot and often develop depression, which makes them isolate and close in on themselves. Our state owes these people a debt and must provide them with treatment. We treat them in our clinic by admitting them with another diagnosis, since there is no clinical pathway for hidradenitis suppurativa. When patients are treated abroad, they pay for their therapy and operations themselves, which is by no means normal," said dermatologist Prof. Evgenia Hristakieva, head of the Clinic for Skin and Venereal Diseases at the "Prof. Dr. Stoyan Kirkovich" - Stara Zagora.

“We tried m.y. to include the disease in Ordinance No. 38, but it is becoming more and more difficult for patients to access. The regulation is made in such a way that if you want to include your illness at this moment in order to provide treatment under the Fund, it can be done after 2 and a half years at the earliest. Therefore, many people do not wait for their treatment. We are filing a case with the Commission for Discrimination, perhaps this way we will speed up the process of including this disease for treatment under the NHS. Otherwise, we will wait at least another 2 years , added Vladimir Tomov, chairman of the National Alliance of People with Rare Diseases.

Hidradenitis suppurativa or Hidradenitis suppurativa (HS), sometimes called by dermatologists invert acne ("acne inversa"), is a chronic, inflammatory, painful, according to some medical reports - an immune-mediated disease (its mechanism of occurrence and development is associated with with a pathologically altered immune response of the body). It most often manifests itself after puberty, but there are cases of diagnosed 11-12-year-old patients. Pain is the leading symptom of hidradenitis suppurativa. The disease is long-lasting, with phases of disease activity alternating with short-term remissions. Usually, patients suffer throughout their lives, which greatly hinders their social activity and worsens the quality of life.