
First left, Dr Niyi Ogundipe, Consultant at The Pain Center, Othorpeadi hospital, Igbobi and Facilitator at the PAIN summit, 5th from left Ms Ibitayo Ayeni , convener if summit, Ms Toyin Adesola ED Sickle Cell Advocacy and Mgt Initiative l, Implementing partners 2nd from Right MR Bamidele Oyewunmi, rep Nirvan Sickle Cell Initiative co partners of summit
It was a gathering of healthcare professionals – all united by the mission to help people with sickle cell disease live a life devoid of paralysing pains. That was the impression last week at the Radisson Blu Anchorage Hotel, Lagos, as Sickle Cell Health Initiative (SCHI) and Sickle Cell Advocacy and Management Initiative (SAMI) organised a pain management summit in commemoration of the sickle-cell disease (SCD) awareness month.
The 2022 Pain Management Summit, with the theme, ‘Effective Pain Management for Sickle Cell Disease (SCD),’ was aimed at sensitising society about ways to improve pain management for people living with sickle cell disease so that they can live productive lives. At the summit, health providers were empowered on how to effectively provide care, prioritize attention and properly mitigate the barriers, myths and facts when treating the sickle cell crisis. Doing all that according to the experts is necessary because the lives of person living with SCD depends on how fast and effective their healthcare practitioners are in pain management.
One of the medical experts was the Chairman Nigerian Medical Association (NMA), Lagos State, Dr. Benjamin Olowojebutu. In his keynote speech, Olowojebutu called on the government to come up with policies and plans and work with advocates for implementation, adding that non-governmental organisations (NGOs) are the ones picking up the slack for the government. Speaking about the pain associated with the disorder, Olowojebutu said that it could lead to mental health challenges such as stress, anxiety and depression.
“Living with sickle cell disease can be hard, especially for children. They may feel singled out or left out of things others enjoy because of their condition. These feelings can add to other problems the disease can cause,” Olowojebutu said.
He explained further that pain in persons living with SCD happens when the sickle-shaped red blood cells that cause the condition get stuck in small blood vessels and block blood flow, causing pain episodes to start suddenly in the lower back, arms, legs, chest and belly. According to him, sickle cell is the most prevalent genetic disease in the WHO African Region. In many countries, including Nigeria, 10 to 40 per cent of the population carries sickle cell gene, resulting in an estimated SCD prevalence of at least 2 per cent.
“Nigeria has about 25 per cent of its adult population carrying the defective sickle gene in a carrier state and WHO in 2015 estimated that two per cent of all new-borns in Nigeria are affected by sickle cell disease, giving a total of about 150,000 affected children born every year. About 50 per cent – 80 per cent of the estimated 150,000 infants born yearly with SCD in Nigeria die before the age of five years and those that manage to survive to suffer end organs damage, which shortens their lifespan including stroke,” Olowojebutu said.
The Director of Disease Control, Lagos State Ministry of Health, Dr. Agbolagorite Rotimi, said with continuous advancements in the medical field, innovations are springing up to effectively tackle pain in SCD. He restated the state’s commitment to improving the health of its citizens. “Lagos is the pioneer state to commence routine new-born screening for SCDs in Nigeria. This is, in consideration of its unwavering commitment to improving citizen’s health” and in tandem with the city’s status. “This genotype screening service, which commenced in the year 2021, is available in 25 General Hospitals and 40 Primary Health Centres (PHCs) in the state and at present over 5,000 babies have been screened with over 200 babies screened positive for SCD and have been referred to specialist sickle cell clinics in the state.”
For the convener and founder of Sickle Cell Health Initiative (SCHI), Ms Ibitayo Ayeni, a registered nurse based in the United States, the pain associated with sickle cell disease should not be generalised because it is not the same for everyone. For that reason, Ms Ayeni said it is always important to be empathetic when treating sickle cell patients.
“That is why we are training healthcare practitioners to understand how to treat and view sickle cell patients when in their care. Pain is different for all warriors of SCD, depending on how the person treats him or herself. It also depends on the person’s health care team, which is why we are empowering as many providers to know how to provide care and give them a longer life.” Ayeni said that it was important for persons living with SCD to remain resilient in all that they do, adding that they shouldn’t “be ashamed of who they are.”
The Executive Director, Sickle Cell Advocacy & Management Initiative (SAMI) and Chairperson, Coalition of Sickle Cell NGOs, MsToyin Adesola, noted that pain management in Nigeria can be difficult for medical practitioners as well as persons living with SCD because of poverty and poor facilities and health providers’ incompetence. Narrating how someone had died as a result of incompetence, Adesola said her NGO is partnering with some hospitals by educating them on how to understand and treat SCD sufferers.
“We are just having the first pain clinic in Nigeria at Igbobi. Before now, we don’t have pain clinics in Nigeria. We try to partner with hospitals in trying to help them understand sufferers. We have seen situations where people cannot handle it because they want to hold on to “finance” they don’t refer to, and we have lost a sufferer that way. It was painful to see a situation you can’t manage it, you don’t have the facility, capability and no oxygen in the hospital and how do you expect to be able to manage persons with sickle cell.
“Because they refused to refer, the parents decide to take the person from the hospital and they asked them for oxygen to manage him on the trip. They said they can’t give out their oxygen and the guy died on the way to the next hospital. So, you have situations where people don’t understand; it is not all about finances; not about your perception of what treatment should be done. When it gets to a particular level, refer them to a hospital that is equipped to do so and that is what we can give people access to that type of hospitals. Unfortunately, there is always the poverty angle; it is not everybody that can afford such hospitals. It is challenging but we are pushing it.”
Representing Nirvana Initiative, Bamidele Oyewumi, said that their initiative is ensuring an enabling environment and a fighting chance for people living with sickle cell disease. He said: “The Nirvana Initiative tries to ensure access of quality information about the disease and most importantly create enabling environment and safe space for all the warriors battling it.”
Consultant anaesthetist/pain physician, National Orthopaedic Hospital, Igbobi, Lagos, Dr Niyi Ogundipe, who attends to patients with mainly chronic pain, said SCD pain could be a short-term which is called acute or long-term which is called chronic. Explaining how SCD pain can be managed, Ogundipe said: “The ways we can manage them include the fact that we must recognise that they are prone to pain; we should be able to adequately access or measure that amount of pain and tailor our medications, dose, therapy and treatment strategies to that level of pain that they have. We should not put a stop to mobilizing all resources to achieve that aim.
“It is not easy for them to manage their pain. Every challenge we have in life we need resources to do and sometimes we need resources from others to be able to do it. It is not only medical; other challenges are psychological, and emotional among others. What we do is to support, look for resources to support them to be able to withstand that stress. We want them to know what is available, the pathway to ask for help and how to escalate their situation if they don’t get that particular help. There are still resources not optimally used by them,” he said.
He advised intending couples to always check their genotype compatibility to help limit incidents of giving birth to sickle cell persons. “Prevention is better than cure. It might be difficult but it is the step we should embrace more to avoid the incident of giving birth to sickle cell persons. But when it happens, we have to all roll up our trousers and get to work and find a way for the patient; parents and caregivers to mobilise resources to prevent sickness. We train and educate them on the things they can do to prevent triggers that cause crisis such as stress, how to adequately manage their pain at home, how to quickly recognise clear problems and be able to appropriately escalate it to the hospital. Those are the steps of prevention that we take.”
The Executive Director of Xcene Research, Adebukunola Telufusi, said that clinical research in pain management is important because it will help in treating persons living with SCD, adding that clinical trials should be conducted in Sub-Sahara Africa. “Due to the genetic make-up, medications borne from trials out of Africa are less effective, and this calls for clinical trials conducted closer to home – in Africa and for Africans.”