NOVARTIS sheds light and pioneers in research and activities to raise awareness on Sickle Cell Disease
- Sickle Cell Disease is one of the most common chronic blood disorders in the world1. Globally around 300,000 babies are born with the disease annually while 300 million people carry the trait.4,9 Gulf is a region with one of the highest prevalence rates of Sickle Cell Disease among Middle Eastern ancestry marking Saudi, Oman, and Bahrain as the countries with the highest rates respectively.17
- Sickle cell pain crises or VOCs are considered the clinical hallmark of the disease,and are triggered, in part, by multicellular interactions that form clusters of cells, which can block or reduce the blood flow to organs.2 Sickle cell pain crises can be frequent and sudden, and are associated with an increased risk of life-threatening complications.13,14
- A reduction in VOCs is therefore the focus of scientific innovation in this disease area, and a key measure of its success.
- Sharing inspirational stories of Sickle Cell patients from around the world lends a positive light to those affected by the disease and reaffirms that these patients overcome many hurdles to be productive in the society.
- June 19th has been designated as World Sickle Cell Day and in 2020 will run under the campaign NOTALONEINSICKLECELL, (notaloneinsickcell.com), and rethinksicklecelldisease.com
Dubai, U.A.E. – Sickle cell blood disease is known to be one of the most common and painful genetic blood disorders in the world1. Its impact is debilitating to those who suffer from it as well as for families and communities that surround the patients. Raising awareness on the disorder helps those affected with knowledge on coping with the disease, making them part of a large global community and support system. Every June 19th, sickle cell patients, their loved ones, medical staff, and patient organizations dedicate the day to bringing attention to the disease, distributing knowledge, and empowering those affected. This year the day will be coined by the phrases “Know More, Do More Together” and “NotAloneInSickleCell”, highlighting the importance of knowledge and information in learning to live and cope with the disorder and sharing inspirational stories of how patients from around the world overcome challenges and motivate themselves in difficult times. Through the platform www.notaloneinsicklecell.com users have access to these motivational stories from all over the world.
Sickle cell disease is a complex and debilitating genetic blood disorder that goes beyond sickle-shaped red blood cells. The disease is associated with chronic inflammation, causing higher levels of cell adhesion proteins, including P-selectin, which make both the blood vessels and certain blood cells stickier and prone to multicellular interactions, or clusters, in the bloodstream3, 4, 5. This environment can lead to the acute episodes of pain known as sickle cell pain crises, or VOCs, as well as life-threatening complications.2 VOCs are the main reason why individuals living with sickle cell disease seek medical care in hospitals, 13, 14 leading to approximately 200,000 ER visits in the US every year.
As described by Doctor Thuraya AL Hosni head of Oman Patient Organization: “Pain of sickle cell crisis is indescribable, it is like having a hammer and knocking on your bones the hardest you can with increasing and repeated frequencies as well. It is a very terrible pain. For a lady this pain is only 20% of what a labor pain feels.”
The Sickle Cell World Assessment Survey (SWAY) a global, multi-country , cross sectional survey of sickle cell patients and treating healthcare professionals16 from different countries including India, Oman, Bahrain, Lebanon and KSA assessed the burden and the impact of the disease including its physical symptoms, emotional impacts, economic burdens, physician and patient perceptions, as well as patient and healthcare systems.
Patients who completed the survey reported substantially higher number of VOCs than current published data suggesting VOCs are underreported:
Some patients often don’t seek medical assistance and prefer to manage VOCs at home because of various reasons as seen in the figure below: 16
Dr Thuraya stated that she usually manages her VOCs at home because she doesn’t want to visit hospitals and she believes that there is more life outside of the hospital walls to be enjoyed. The core is to improve and focus on self-improvement rather than the pain crises. “I manage the pain crises at home with pain killers, relaxing, massage, and drinking lots of fluids unless I feel that it is impossible to manage at home, then I visit the hospital.”
Post VOC symptoms also impact a patient’s ability to transition back to normality. SWAY reports some of the most common in the below visual.
Often times these symptoms follow patients for days, debilitating them from smoothing into their routines and being able to carry out normal daily practices. The burden of the disease goes well beyond the physical realm and into the emotional and mental well-being of patients. As highlighted by Dr. Ahmed Soliman, specialist registrar at Thalassemia Center, Dubai
Health Authority: “Sickle Cell disease has a substantial impact on patients’ emotional well-being and daily life, which also impacts their ability to work and or complete their education”. SWAY illustrates some of the burdens in the below infographic
To mark World Sickle Cell Day on June 19th, 2020, Novartis Oncology Gulf in collaboration with patient organizations and medical communities, will conduct a series of activities such as interviews with doctors and specialists as well as media round-table conversations across the UAE, Oman, Bahrain and Kuwait. These initiatives will be frequently repeated until the end of the year, in hopes of maintaining momentum in the race to spread information and awareness on the disorder and to urge patients seek the medical attention and mental support available to them. In a statement by a Novartis spokesperson Wael Omran, Oncology General Manager-Region Gulf: “In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Our partnership with the health authorities across Gulf Countries aims to improve the diagnosis and treatment of people with sickle cell disease through a comprehensive approach that includes treatment and disease management, training and education, and elevating basic and clinical research and scientific capabilities.”
Sickle cell disease affects millions globally, with symptoms that vary in clinical severity depending on each individual case2; these patients have long suffered silently through unimaginable pain crises. However, with research come new treatments which will help thousands of people living with sickle cell by reducing the frequency of their pain crises and potential life threats. This brings a new string of hope to the sickle cell disease community for a brighter future with more VOC-free days.
Patients with sickle cell disease experience a shortened lifespan, living only into their 40s7. This is why early diagnosis, ongoing patient education and awareness, and simple medical care, including access to blood transfusions and hospital treatment, can greatly improve patients’ life expectancy4. However, in many regions of the world, these measures are not available, and management remains inadequate4. Life expectancy is still reduced by about 20-30 years even in a high-income settings. Wael Omran concluded, “As a leading global medicines company, Novartis is reimagining medicine to improve and extend people’s lives, that includes taking steps to help address the needs of patients with sickle cell disease, we use innovative science and digital technologies to create transformative treatments in areas of great medical need such as sickle cell disease.”
To read more about sickle cell and check patients’ stories
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Novartis is reimagining medicine to improve and extend people’s lives. As a leading global medicines company, we use innovative science and digital technologies to create transformative treatments in areas of great medical need. In our quest to find new medicines, we consistently rank among the world’s top companies investing in research and development. Novartis products reach more than 750 million people globally and we are finding innovative ways to expand access to our latest treatments. About 109,000 people of more than 140 nationalities work at Novartis around the world. Find out more at
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