HAE Patient Association: Three patients with severe hereditary angioedema have been without therapy for years

In Montenegro, three patients suffering from the most severe form of the rare disease - hereditary angioedema (HAE), have been waiting for years for prophylactic therapy that prevents attacks and directly saves their lives, said the Association of HAE Patients and requested an urgent response from the Ministry of Health.

The Patients' Association explained that HAE is a rare genetic disease that causes sudden and painful swelling of the skin, mucous membranes and internal organs. Attacks occur without warning and last for days. When the swelling affects the throat, suffocation occurs. Therefore, each attack is potentially fatal.

"Does it really have to be fatal for the system to react? We know that respiratory attacks are deadly. These people go to bed every night with the fear that they won't wake up in the morning," the Association warned.

In Montenegro, as they stated, there are 47 people living with this diagnosis, including 13 children.

"Therapy for acute attacks only helps when the problem arises, but for the three patients with the most severe clinical picture, this is not enough. They need prevention (prophylaxis) that completely prevents attacks," the statement emphasizes.

The Association said that certain patients in Montenegro are already receiving this therapy and thanks to it, they work, go to school and live normally, but that on the other hand, three patients with an identical clinical picture and the same medical indications still do not have an approved drug.

"How do we explain to people that the drug exists, that it has already positively changed the lives of other patients, and that there is no approval for the three of them? Is it fair that some live normally, while others suffer unbearable abdominal pain, vomiting and expect to suffocate every day," the Association asked.

They said that patients with HAE should not be second-class citizens when it comes to the right to life.

The associations warned that HAE sufferers are in a worse position than patients suffering from other rare diseases, for whom therapies are regularly approved. This makes them feel discriminated against and left to fend for themselves.

"This is not about a large number of people or luxury, but about three human lives. The financial burden on the system is minimal, and the difference between life and death for these three families is enormous. We appeal to the authorities to urgently approve prophylactic therapy for all who need it medically. The right to a dignified life without fear must not be a privilege," concluded the HAE Patients Association.