Sickle Cell Disease Treatment Access and Resources Around the World
According to sickle cell disease expert Dr. Andrew Campbell, “There are patients who are not heard or told they're not in pain. They're not heard when their health is going down the tubes clinically." Sickle cell disease (SCD) care is not always easy to locate, and we at DHH want to continue our efforts working toward health equity for SCD patients.
Receiving quality care is important to managing SCD treatment, symptoms, and treatment side effects over time. SCD experts not only prescribe treatment for patients but also provide advice for managing pain crisis risks and severity, genotype screening, and genetic counseling for improved care. Here’s a look at sickle cell disease resources outside the U.S. along with a research update.
SCD patients tend to receive inferior care compared to patients with other genetic diseases, like cystic fibrosis, that are more likely to impact higher income, white patients. But new research into genomic treatments like CRISPR for SCD are an important step towards equitable care. The U.S. government has allocated recent government funding for sickle cell disease awareness and research, and some exciting research is under clinical study. There are two clinical trials that will be studying the effects of CRISPR gene editing on sickle cell disease. According to Fyodor Urnov, PhD, a 20-year veteran in the sickle cell field, “Bottom line, the progress of CRISPR/Vertex is a landmark in that it’s likely to generate the first approved CRISPR-based medicine. That would be an extraordinary moment for us.”
Sickle Cell Disease Support Resources
| Organization | Mission | Resources |
| Canada - Sickle Cell Disease Association of Canada | The Sickle Cell Disease Association of Canada mission includes raising public awareness and promoting improved diagnosis and treatment of sickle cell disease and its complications. The association accomplishes these efforts through supporting research efforts, supporting the development and implementation of standard of care guidelines, raising sickle cell disease awareness, mobilizing public support to ensure access to adequate SCD care, providing educational resources, collaborating with other Canadian and international Sickle Cell groups, various levels of government, hospitals and clinics, health care professionals and other stakeholder groups, and supporting the development and maintenance of a Canadian Sickle Cell Patient Registry and the dissemination of best practices for improving the quality of life of patients with sickle cell disease. |
Website |
| India - India’s 1st National Alliance of Sickle Cell Organisations (NASCO) | India’s 1st National Alliance of Sickle Cell Organisations (NASCO) works to empower sickle cell disease patients in India. | Twitter |
| India - Sickle Cell Awareness Foundation | Dr. Dexter Patel leads the Sickle Cell Awareness Foundation in India to raise sickle cell disease awareness and to share information with SCD warriors and healthcare professionals. |
Facebook |
| London - Sickle Cell Society | The Sickle Cell Society has been working alongside health care professionals, parents, and sickle cell patients to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential and to improve their overall quality of life. |
Website |
| Nigeria - Sickle Cell Foundation Nigeria | The Sickle Cell Foundation Nigeria is a non-governmental and non-profit making organization dedicated to the proper care and control of sickle cell disorder in Nigeria and beyond. SCFN has a merited association with the Department of Public Information (DPI) of the United Nations. | Website |
| Nigeria - TonyMay Foundation | TonyMay Foundation (TMF) is a non-profit that provides care, awareness and advocacy for those living with sickle cell disorder in Nigeria. Two siblings who passed on in a space of six months as a result of sickle cell complications and poor access to healthcare were the inspiration for starting TonyMay. They imagine a world where the term “sickle cell” is not synonymous with death and in which sickle cell warriors can enjoy a good quality of life; where Nigerian hospitals and medical staff are better equipped with adequate training, care, and facilities to properly manage sickle cell patients; and a world in which Nigeria is eventually sickle cell-free. |
Website |
| Nigeria - Winifred’s Instagram Profile Messenger | Sickle cell disease warrior and TonyMay Foundation Chief Operations Officer Winifred Otokhina’s Instagram provides information about SCD resources, encouragement, and training opportunities for others seeking donor funding. |
Instagram |
| Port Harcourt, Nigeria - Sickle Cell Awareness and Health Foundation (SCAHF) | The Sickle Cell Awareness and Health Foundation (SCAHF) is a non-profit organization dedicated to raising awareness of sickle cell disease, reducing child and maternal mortality, and eradicating the stigma associated with the disease in Nigeria. Their efforts work to provide sickle cell awareness, free genotype screening, sickle cell advocacy, genetic counseling, volunteer blood donation awareness, support groups for SCD warriors, and blood drives. | Website |
We hope you can share the information with other sickle cell disease patients and families to provide more awareness about research updates and support resources. Stay tuned as we continue to publish updates from sickle cell disease experts and advocates. You can also find our free Sickle Cell Disease HubKit and PrepKit resources.
In retaining editorial control, the information produced by Diverse Health Hub does not encapsulate the views of our sponsors, contributors, or collaborators.
Importantly, this information is not a substitute for, nor does it replace professional medical advice, diagnosis, or treatment. If you have any concerns or questions about your health, you should always consult with a healthcare professional.
Source
Innovative Genomics Institute. CRISPR Clinical Trials: A 2022 Update. Newswise website. Accessed May 5, 2022. https://www.newswise.com/articles/crispr-clinical-trials-a-2022-update
