Acromegaly patients demand creation of register of people with rare diseases
KYIV. March 3 (Interfax-Ukraine) – Patients with acromegaly demand that a register of people with orphan (rare) diseases be created on the basis of the eHealth system and their disease be included to budget-funded programs.
They said this during a press conference, which was hosted by the Interfax-Ukraine News Agency on Tuesday.
"It is necessary to create a register of people with orphan diseases on the basis of the eHealth system, develop and approve a patient pathway, create a specific program on acromegaly and a separate budget for it. It should have a package approach, including surgery procedures, beam therapy and medication, as well as training of family doctors (for dealing with acromegaly). We will also demand that our non-governmental organization be included to all permanent working groups for procurement of medicines," President of NGO Ukrainian Pituitary Foundation Andriy Putnikov said.
He also noted that there is a need for assessment of medical procedures as an effective instrument for treatment using innovative solutions within the framework of limited financing.
"Despite the law and instruction of the Cabinet of Ministers No. 160 dated March 31, 2015, which provide for guarantees for people with acromegaly regarding regular lifetime treatment, in fact such patients are not provided in full or not provided at all with medicines. The reason is the lack of the state register, hence the majority of acromegaly cases are treated without a system approach and ineffectively," he said.
Putnikov also complained about the absence of multidisciplinary clinics and the lack of domestic standards for diagnostics and treatment of acromegaly.
In turn, endocrinology expert of the Health Ministry of Ukraine Iryna Kondratska said that it is necessary to train family doctors as patients with acromegaly contact them first in case of necessity.
"Nobody diagnoses acromegaly. The problem is that there is no awareness and information. We have a disastrous situation – 844 patients with acromegaly are officially registered in Ukraine today," she said.
Kondratska added that there are successful cases of the programs for treatment of this disease in Zakarpattia regions and Kyiv.
At the same time, member of the Ukrainian medical expert community Tetiana Koba said that assessment of medical procedures could be used as an instrument for doctors to purchase necessary medicines for treatment of the disease in regions.
"We have only one solution – either instruction No. 333 (currently No. 1172 dated December 4, 2019) excluding the grounds for assessment of medical procedures should be amended or an instruction or a method of assessing medical procedures should be developed as soon as possible. We have to give doctors an instrument using which they could buy necessary medicines at the local or national level," he said.
Doctor of Medicine, Professor Mykhailo Kyryliuk, who is a neuroendocrinology expert, emphasized that treatment of a patient with acromegaly could cost the government at least UAH 8,000 per month.
"For example, the average cost of treatment of such a patient in the United States is $24,000 per annum, of which $17,000 [is spent] on medical services and the rest – on medicines. […] Our government cannot allocate such money. The minimum cost of a surgery for such a case is UAH 45,000," he said.
Putnikov also noted that today acromegaly patients pay from $3,000 to $5,000 for surgery at the Neurosurgery Institute in Kyiv.