Dr Zipporah Ali: In Kenya, advocacy is changing the policy landscape. Continuous meetings with ministry of health have helped to achieve this. The national authority for the campaign of drug abuse, invited us to take part in a workshop. Eventually, the narcotic drugs psychotropic control act 1994 was amended, following progressive policy proposals. This is the first time two sides of the argument came together. Advocacy work has made a real difference to this cause. Kenya will be involved in manufacturing a supply of morphine for chronic diseases. The government has bought in 47 kg of morphine. This might not sound like a lot, but previously there was only 5kg, and it expired on the shelves, it wasn’t even used. Taking steps to ensure this is produced in the country. Integrating palliative care services in Kenya. We are working with county service hospices to integrate palliative care into the system. 300 total in Kenya, so a long way to go, but we are making big improvements. Education is a big part of this. Doctors don’t know how to treat pain. The mantra is ‘Wait until they die and then give them the morphine’. Doctors afraid of the heavy fine and penalties for prescribing morphine. Pain free hospital initiative, going to hospitals and training and educating the doctors to ensure that they have proper education on how to administer pain relief. Graph (on screen) shows that there is a definite correlation between pain relief and knowledge of how to administer pain relief. When we started the project there was only 30 bottles of morphine per month. After training there were many more bottles. We have been making efforts to put palliative care into the national curriculum. 2002 Fred was told to go home and had few choices left – young man , 32 years old with 2 young children. Main symptom was intolerable pain. Morphine practically saved his life. He is now an advocate. Why do we allow patients to die in excruciating pain: 1) Stringent regulations and laws 2) ignorance of ministries and public 3) Culturally Africa believes people should endure pain. We have to develop positive drug policies. Advocacy, education, ensuring, accessibility, availability, affordability, I believe it a human right. Policy makers in this, building people in this room, can make a difference.
Dr Nandini Vallath: Thanks the organizers. Good to speak about Indian perspective. HRW survey is a precise survey of states and access. Shows very limited availability of pain relief. India has 1/6th of the world population. Many people, including children, do not have pain relief. Does drug policy have a role? India a pig producer of opiates. Availability huge, what is holding it back? 18-19th opium was a trade crop. 19-20th opioids became a plant of drug abuse. This meant that medical use was not within policy language. Lack of job mandate for NCA for ensuring availability. Complex procurement, procedures, prescriptions. Doctors has several misconceptions about opioid usage. Very harsh punishment, not distinction made between trafficking and usage. This created a fear of usage of the medicine. All of the reasons that contribute to the lack of usage were in the policy language. Consumption of morphine dropped 97%. Single convention 1961 basis for national drug policies. We must integrate new knowledge to dictate policy language. Step 1: supportive policies . What we did take for policy reform in India. 25 years of advocacy to change policy language. Teachers, policy analysis from INCB etc. Key government officials fought for us/ National program for palliative care – 2012 -17 fought at the supreme court by lawyers- filing a litigation claim against the gvt. For lack of access. Human Rights watch wrote an open letter to the gvt. 2014 – the amendment was made. The revised rules following the 2014 act amendment not released. Old barriers are coming with a new look – there are still massive barriers. 80% of those visiting cancer center left with no or inadequate pain management. Even if all members states have the polices with appropriate language, the mindsets have not changed. Perception are more powerful then the law. Changing the perception of drugs and drug polices. HRW report, opioids for medical use, have been mentioned only 9 times. Expression of purpose at the highest level is important. Perception purpose at he NCA – department of health. Interagency cooperation’s to direct measures. Reorientation of the policy mandate to help reorientation national drug policy. Needs a nationally competent authority to deliver pain relief. This is needed all over the world. No authority wants to take responsibility for this change. We can use model polices. Must use resources – WHO guidelines, UNODC, UNAIDS, INCB and world health assembly. Resolution of palliative care. Strong licit drug distribution system. Chain of organization required to administer, all must be there: INCB – national competent authority – importer/ manufacturer, — hospitals – physicians. Agencies of the UN must unite. 2016 a year free of pain.
Dr Chris Ford Chair: opens to the floor for questions.
Katherine Pettus (IAHPC/IDPC): I’ve found that people have to experience pain in order for them to become advocates.
Dr Sipporah Ali: advocating can work and impart these ideas.
Dr Nandini Vallath: By directly interacting with counterparts elsewhere in the world, they noticed that the situation was the same and this helped them to convert and realize the situation was the same internationally. Seeing patients in pain, has also transformed people into advocates.
Sebastian Saville: Every time I played my film [on pain relief] to people, they were genuinely shocked – to know that 80% of the world’s population did not have access to pain relief. I think most people are shocked to hear this.
Dr. William Okedi CEO of NACADA (National Authority for the Campaign Against Alcohol and Drug Abuse) Thanks the floor and contributors and organizers. Creating an awareness is the first stage and is important. We need to find ways in which we create opportunities to meet the policy makers. People beginning to understand in the developing countries. Cancer is the 3rd cause of death. We have national conferences to address this issue. The 31st of this month we are having a national conference to discuss Kenya’s input into the UNGASS. It is important to get our message to the parliamentarians, particularly the health committee. Must focus on a community level and coordinate a national respond.
Mike Trace (IDPC): Thanks the floor. Thanks for concise and inspirational speeches. For the first time we have a policy environment that supports the agenda instead of inhibiting it, which is promising. Is anyone of aware of a program that coordinates the UN agencies? This is needed.
UK Doctor: I’m a family doctor in the UK and I was astounded to notice that so many of the world’s countries do not have access to palliative care. We have policy makers in this room that have a responsibility to sort this out. Including the UK department of health.
INCB Rep: I agree, there should be a programme to coordinate this.
Zipporah Ali: Thanks you all for coming, good to know that we are working toward the same thing.
Vallath: the reason the ball got rolling is because the WHO notices the issue in India, and we began are work because of WHO’s initiative. I hope things will change at the UNGASS.
Chair: Important to knock on the door, on the ‘doors of all the countries that maintain these polices.