The Promise of Tomorrow: An Interview with Sickle Cell Disease expert, Dr. Isaac Odame
To Dr. Isaac Odame, sickle cell disease (SCD) was always on his mind. After witnessing several of his friends and relatives suffer from this disease, he chose to combine his love of pediatrics and his passion for SCD– and train as a pediatric hematologist.
The Sickle Cell Awareness Group of Ontario (SCAGO) had the pleasure of sitting down with Dr. Odame to discuss the state of SCD treatment, research, and beyond.
What are some advancements in SCD that you have seen throughout your career?
Throughout his career, he has seen major advancements in SCD. There have been major strides in the early detection of SCD at the time of birth– preventative measures that have been put in place long before the child shows physical manifestations of the disease. Through educational interventions, he has seen parents become more aware of SCD and its ways to detect disease manifestations, leading to reduced early sickness and mortality in those who have SCD. Moreover, the ability to detect the risk of stroke– one of the most devastating complications in children with severe SCD has also seen major advancements. Using transcranial doppler testing, the identification of those who are at risk of stroke can be determined, which can then be remedied with treatment from blood transfusion and hydroxyurea.
SCD advancements have not been limited to detection but have seen major improvements in the treatments available ranging from wider use of hydroxyurea therapy to bone marrow transplant and emerging gene therapies. Hydroxyurea therapy has never been easier, with patients and families being aware of the benefits of the treatment and its ease of intake- as one only needs to take the pill once a day. There has also been some progress in curative therapies such as bone marrow transplants. While only a few families are fortunate enough to have another family member that is a perfect match, Dr. Odame has seen advancements in the medical field to make the procedure less intensive, while also improving safety protocols and transplantation tolerance. These strides have made this treatment increasingly available to patients with sickle cell disease, however, more work is needed to further improvements in this field, such as the testing of families to identify sibling matches.
More research must be done to develop more drugs to combat SCD, so these vital medications can be distributed into the market faster. As of this moment, over twenty different medications are being studied, bringing the promise of different, potentially more effective, drug options of mediation to patients who suffer from SCD. Dr. Odame also discussed the potential for gene therapy- a new upcoming treatment targeting SCD. With this treatment SCD patients do not require a donor– their stem cells can be used and modified and used for treatment. This not only would increase accessibility to patients than transplantation but if successful could mean that soon SCD could be a curable disease.
What challenges have you noticed in SCD treatment?
However, despite these exciting new advancements in SCD treatments, care is still rife with challenges. Difficulty accessing pain medications in emergency rooms can be difficult. While pain medications are effective, many patients are not able to access these medications promptly. Moreover, systemic racism can exacerbate the suffering of patients with SCD by posing barriers to receiving the highest quality of care for SCD patients. More work is needed to not only raise SCD awareness in healthcare providers but to look at all families and patients in a holistic approach when treating someone with SCD. Increasing interest in SCD research and addressing social determinants of health are immensely important to begin to combat the role of systemic racism in the care of patients with SCD.
Yet, while we face many challenges in SCD care here in Canada, the heaviest burden of sickle cell disease is seen in low-income countries across the world. While many treatments are available here at home, these ‘solutions’ are not always workable in low-income countries. To find ways to improve SCD care in these counties, the Global Sickle Cell Disease Network was created. This organization was created in 2009 and consists of clinicians in low, middle, and high-income countries to further clinical care in low-income countries. Annually, they bring people together to discuss specific topics related to the global health of SCD. And so far, they have had some success in accessing treatment for patients with SCD across Africa. Global maps of treatment centers that provide hydroxyurea therapy are available to the public, meaning even people visiting can easily identify centers that will provide adequate treatment in Africa.
What is the Ontario Clinical Handbook?
Dr. Odame sees the promise of the future. And he plans to begin to fulfill this promise with his pursuit of standardizing care of SCD across the board, focusing on the management of acute pain crises. He co-chaired a committee of SCD clinicians, allied health workers, patients, and advocates to help begin this clinical handbook and make sure it is implemented in the care of patients with SCD. This handbook would go beyond care within the hospital, but also guide patients on continued care– what they should do when they get home from the hospital, and links to SCD centers as an alternative to emergency departments. Organizations like SCAGO can use this information to empower patients so they can advocate for the care they need– and deserve.
While this handbook has provided invaluable guidance to people across the country, there is a need for it to be further implemented across the board. How can this be done? Dr. Odame hypothesizes potent advocacy tools like putting pressure on hospitals may be able to make a difference. While this may not be one hundred percent sure, one thing is for certain– SCD is a disease that is finally gaining progress but requires more work to be done, and for Dr. Isaac Odame that work is a calling and one that he had dedicated his life to.