Performance of PwMS RPO in 2006-07: ‘How is steel tempered?’

(a letter to friends)

The alterations the Russian society has undergone within the last 20 years have appeared a heavy burden on the shoulders of ordinary people. It was especially difficult for people stricken by Multiple Sclerosis (MS). First, they would not be able to get authentic information about adequate treatment for MS, then, they would not be able to get necessary medicines because of their soaring prices and the difficulties of time required for the healthcare to re-organize.

For some 15 years, voluntary organizations of people with MS (PwMS) in Russia have been working incessantly and actively to advocate the Constitutional right of persons with MS to live. Since then, the number of regional MS societies has grown from 4 to 48, and the total number of members in MS organizations from 76 reached 35,572 people. In 2001, the PwMS RPO was established that has housed all these organizations. The main goal of the PwMS RPO is to create auspicious legal environment for regional MS societies to work effectively. The mission is to advocate Constitutional rights of persons with MS in Russia.

The objective, which was set for the management of the PwMS RPO at the First Congress in 2001 and reads as ‘…to initiate the development and passing of the law, which shall entitle people with MS being Russian citizens to be provided with free drugs modifying the course of MS – glatiramer acetate, interferon beta-1a and interferon beta-1b…’, was achieved in 2004 on passing the laws FZ-122 and FZ-178. The supplements of these laws included a list of medicines for “Additional Pharmacological Support” (APS). Among those, medicines for MS were separately indicated. Over the period 2004-2006, the number of PwMS getting adequate treatment with these medicines increased from some 1,200 to 5,387. A drawback of the law appeared the division of PwMS into ‘federal’ ones, who had their disability formally confirmed, and those being ‘regional’, whose disability remained unconfirmed. ‘Federal’ patients would get treatment at the expense of funds of the Russian state budget, and ‘regional’ patients would do it at the expense of funds in the budget of the region, in which they lived. It was a situation of ‘unequal opportunities’: ‘Federal’ patients with MS happened to be better protected than ‘regional’ ones because of the difference not only in funding but also in the structure of regional healthcare systems, the competence of specialists, diagnostic facilities. Besides, having a strong regional MS society in place would count. There, where such societies had been established, the reform went through better. In case the voluntary organization had authority with the powers, then the assistance to PwMS would be significant.

However, as a result of the financial deficit in the budget of the Russian Federation (RF) Healthcare and the contradictions appearing between the federal authorities and those in regions with regard to ‘federal’ and ‘regional’ patients with MS, treatment for PwMS was in decline starting 2006. Some federal ministries suggested “excluding high-priced drugs (in particular, those to treat PwMS) from the APS list in order to have budget surplus…”  Voluntary organizations responded promptly: There were press conferences held with politicians and authorities, working meetings organized with representatives of the Ministry of Healthcare. These events enjoyed a wide coverage in the media and on TV, there were talks given on the radio station ‘Echo of Moscow’, publications in government newspapers. The eventual result of this activity was the inclusion of PwMS RPO representatives in public and expert commissions at State bodies, and the agreement to maintain legal relations between the PwMS RPO and the Federal Service on Surveillance in Healthcare and Social Development in the RF.

In 2007, the PwMS RPO was among the principle developers of the project ‘Ensuring Equal Opportunities for Federal and Regional’ groups of PwMS in providing them with adequate treatment for free. The MS Society together with other six voluntary organizations were able to achieve bringing PwMS and patients with other six nosologies in a separate clause of the federal budget and managed to allocate funds with the help of the Ministry of Finance and RF Parliament Members as much as 33 billion roubles (about €1 billion), out of which 4,5 billion roubles (about €125 million) goes for MS purposes. This budget has been approved for a three-year period.

To control rendering assistance to PwMS in regions (in particular to control providing PwMS with high-priced medicines), the PwMS RPO has developed and agreed with the State authorities of the RF, the establishment of the structure within the Public Control being ‘Institution of Plenipotentiary Public Expert’, whose main objective shall be to keep in control the quality of rendering medical and social services in the regions of Russia. During the first year of its work, the structure made it possible to increase the number of PwMS, who get the treatment with glatiramer acetate and interferon beta’s, by 64%. Plenipotentiary Public Experts (PPE) are chosen from the public sector. As a rule, they are family members of PwMS, or they are PwMS themselves. For today, we have PPE representatives in 36 regions across the RF. They help develop registers of PwMS; they control timely receipt of medicines as well as submitting state tenders; along with the Principle Neurologist and Minister of Healthcare in the region, they sign the document demanding for high-priced medicines to submit to the Federal Ministry of Healthcare.

At present, the PwMS RPO is working on another initiative to organize a system of regional specialized medical and rehabilitation centres for assistance to PwMS, to develop a specialized MS learning programme for health profession, nurses at these centres, as well as to develop learning workshops for nurses visiting in home, for PPEs and PwMS proper and their families.

The PwMS RPO is making every effort to develop a stable system to assist people with severe disabling diseases so that they feel ‘peers among peers’.

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