When Storytelling Makes a Difference between Pain and Peace

Andrey Rokhanskiy is the director of the Institute for Legal Research and Strategy, a grantee of the Open Society Foundations that advocates for palliative care and patients who use drugs in Kharkiv, Ukraine. Each year he prepares the Health Rights Report, an analysis of patients’ rights violations in Ukraine. I recently spoke to him about the role of storytelling in his work.

How did you become a human right activist?

I used to work as a medical doctor for twenty years. Early in my career, I went to the apartment of a cancer patient in a building that was so old and ruined that there were no stairs to the second floor. I had to take a ladder and climb into his window. He was lying naked on the bed and screaming of pain, alone, with no family around him. He said to me: “I don't care about food, clothes or cold, all I want is this pain to go away.” The nurse could only visit him twice a day to give him an injection, as required by law. So he would spend eighteen hours of the day crying of unbearable pain. I went to the chief doctor and asked to visit this man regularly to make a third injection so this man could suffer a bit less. Later during my medical practice, I was regularly witnessing cancer patients committing suicide by jumping out the windows at the hospital.

In 2010, an expert from Human Right Watch visited Ukraine and explained why giving only three injections of morphine a day—a limit set by Ukrainian medical protocol—was equivalent to torture. At that moment I decided that I would do whatever I could to make help those who suffer. This inspired me to get a law degree and begin working as a lawyer specializing in public health issues, and those related to pain relief for patients with life-limiting illnesses.

What does your organization do to protect people’s health rights?

For the last three years, we have focused on ensuring access to opioid pain management in Ukraine and the protection of palliative care patients’ rights. We collect stories of violations of health rights from patients (which can be submitted as complaints) and we report them to the UN Special Rapporteur on the Right of Everyone to the Enjoyment of the Highest Attainable Standard of Physical and Mental Health. The rapporteur’s mandate includes public hearings, meetings with Ministry of Health officials, and other high-profile events, where we can raise these issues.

Do you use these stories in your media advocacy?

Yes, many of these patient stories have been published in a book called We Want to Live Without Pain and Suffering as part of a project focused on documenting the stories of cancer patients. The book has been read by journalists, medical practitioners, and policymakers and has had substantial media coverage.

You participated in a storytelling workshop led by the group Narativ. How has this shaped your advocacy?   

Strong personal stories unite people of different backgrounds and inspire us to help those in need. After the workshop, I decided to use my story and the stories of other activists to push for change.

Since last year I have worked within the Office of the Ukrainian Parliament Commissioner for Human Rights where I represent the medical and health rights expert community.

We are in the process of organizing a meeting with the commissioner about access to opioid substitution therapy in Ukraine and I have invited a patient who also attended the Narativ workshop to come to this meeting. We want her to talk about her own lack of access treatment. We believe her story will help the commissioner understand and care about patients like her.

What other successful cases have you had?

Recently, we had a victory in the small town of Bucha. For years, doctors would not prescribe morphine for cancer patients, leaving them to die in pain, because they didn’t want to get involved in the complicated bureaucratic procedures around opioids. We appealed to the Parliament Commissioner for Human Rights, and she started her own investigation. Later, she asked the Ministry of Health to initiate a pain management program in the district hospital and to provide the state hospital with a license for opioid drugs. Now, adequate pain treatment is available in Bucha.

Tell us about the Health Rights Report, which your institute has been presenting annually since 2007.

The Health Rights Report includes information about the state of health rights in Ukraine—including cases of health rights violations of marginalized people like injection drug users, prison inmates, people with physical and mental disabilities, and the LGBTQI community.

We presented the most recent report in April of this year in the Office of the Ukrainian Parliament Commissioner for Human Rights, where public health experts and patients directly spoke to media.

We invited relatives of patients whose rights had been violated to tell their stories. For example, Andriy talked about his father, who had died of cancer and had been denied pain relief at home. Andriy filed a lawsuit and this case led to the creation of a mobile team at the state regional hospital to provide care and pain relief to cancer patients at their homes. During his presentation, Andriy said that due to our team’s work, his father had been able to receive four injections of morphine a day—allowing him to die in peace, together with his family.

What is next for the Institute of Legal Research and Strategy?

We plan to expand our use of personal stories and produce stories of cancer patients in audio and video formats. These stories will be used in our advocacy work with doctors and health ministry officials to get them to directly listen to the voices of those in need.  

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