By Lola Asanalieva, MD, PhD, Co-chair of the Association
Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program operating from the Osh Cancer Center and was supported by a small group of nurses from Scotland. In 2010, the Soros Foundation-Kyrgyzstan (SFKg) and the Open Society Foundation's International Palliative Care Initiative (OSF’s IPCI) began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation.
Before 2014 in Kyrgyzstan, only injectable opioids were available for pain relief, including morphine, tramadol, and promedol. Because of very restrictive legislation, there were serious obstacles to making opioids available for palliative care patients that led, in some cases, to patients in severe pain turning to illegal drugs, including heroin.
After advocacy campaigns conducted by the civil society coalition between 2012 and 2014, oral morphine was finally registered and approved for use in Kyrgyzstan. It was introduced to the State Guarantee Program to be used by medical professionals in the primary health care system and hospitals as the medication of first choice for pain relief for palliative care patients.
Some barriers still remain, but there is progress; in September, the Health Insurance Fund increased the amount of morphine per patient that it pays for, from 3000 mg yearly to 5000 mg. Unfortunately, patients themselves must pay for any additional morphine. Also, a number of other government regulations continue to hinder the procurement, prescription, delivery, and management of oral opioids.
State-run palliative care services are included only in the palliative care departments in the National Cancer Center in Bishkek, Osh Oblast Cancer Center, and two TB hospitals for patients with multidrug-resistant/extensively drug-resistant TB in two villages. Unfortunately, these services are not meeting the needs of the vast majority of palliative care patients.
Since 2013, three pilot home-based palliative care services were established with three NGOs — Open Medical Community, Ergene, and Belek Nuru — in the two biggest cities, Bishkek and Osh.
The Association for Palliative and Hospice Care in Kyrgyzstan was established in 2017 with the support of Soros Foundation-Kyrgyzstan; it consists of palliative care NGOs, the patient organization Movement Against Cancer, and the Association of Oncologists and Radiologists of Kyrgyzstan. The association plans to run all advocacy activities going forward, and will develop a strategy of work for the next five years.
In 2017-2018, the Association conducted a series of advocacy events including: round tables, public actions, press conferences, mass media coverage on the topic of pain relief, and access to palliative care. The activities informed government officials, family medicine centers, regional hospitals, physicians, nurses, health managers, journalists, patient organizations, and the general population. These events informed all key stakeholders and helped to create a positive attitude toward palliative care development.
In 2018, for the first time the Association held a volunteer conference, with the motto #BecauseIMatter, to commemorate World Hospice and Palliative Care Day. Volunteers and activists who provide assistance to palliative patients and their families, relatives of patients, representatives of government, and non-governmental and international organizations gathered at the conference from different regions of Kyrgyzstan. Overall, more than 70 participants attended this event.
The main purpose of the conference was to attract public attention to the issues of palliative and hospice care in Kyrgyzstan and to develop a large-scale volunteer movement to help palliative patients and their families. The conference become a platform for discussing the medical, social, and spiritual needs of palliative patients and their family members, and how volunteers can support and develop the country’s hospice and palliative care movement.
It is impossible to imagine quality palliative care without volunteers. The desire to help and to be useful to those who need help are very developed in our society. We see our task as directing this potential to improve the quality of life and help palliative patients live the rest of their lives as fully as possible, without fear and a sense of alienation from society.