Raising Patient Voices in Tajikistan

Background and context: The incidence of breast cancer in Tajikistan is 5.5 new cases per 100,000 (statistics, Tajikistan, 2016). Stigma and discrimination among patients with breasts cancer is one of the main cause of low attendance rate of patients of hospitals for investigation and treatment. Aim: Is to empower Tajik women living with advanced breast cancer to lead productive lives with a high quality and improve communication of patients with advanced breast cancer at all levels; republican, regional level and community levels. Strategy/Tactics: Improve communication of patients with advanced breast cancer (at all levels of health care systems) to address breast cancer patients' needs. Women's voices raised at the republican level and directions to Ministry of Health to improve services with metastatic breast cancer. Women's voices raised at the regional level. Women's voices raised at the community level. NGO Avesto will assist patients to improve communication in their 16 communities. On the patient group level NGO Avesto will hold patient's forums and organize discussions to decrease stigma, increase awareness on treatment, adherence to treatment and rehabilitation activities. 700 people- patients, family and community members will receive information about treatment, rehabilitation, available social services and will be connected by social network. Patients will get assistance through hotline, Web site information. Program/Policy process: Working plan have been developed. We have used interviews with key respondents: Ministry of Health and Social protection, patients, oncology department and key staff members of specialized institutions. A baseline survey has been commissioned and an end of program evaluation is planned. Outcomes: NGO Avesto has organized patients groups in Tajikistan whose voice have been heard at Parliament, Ministry of Health of Social protection. There was a meetings and round tables discussions organized jointly with Parliament; Ministry of Finances have agreed to allocate an additional resources and budget for the purchase of the medicines. There was a formation of first patient group's Web site, Facebook, hotline. Hotline staff members receive 120 calls from women on a daily basis. There was (6) six awareness campaigns (300 women attended). What was learned: Political commitment is very important in advocacy activities. Involvement of key members of Parliament was a key factor for a success of program. Patient's involvement and participation at the meetings, higher level round table discussions, organized at the ministries have influenced on policy changes and increasing the financial support to oncology departments and specialized oncology health institutions in Tajikistan. Creation of patients and survival support groups, their Web site, Facebook page, hotline have increased the awareness of patients on necessity to continue and complete treatment.