By Shehu Olaitan Mohammed FCA
The United Nations Organization has designated June 19th of every year as World Sickle Cell Day since 2008 to raise global awareness of the disease as a public health concern.
This year’s Global theme is “Closing the Survival Gap: Equity in Sickle Cell Disease.” The theme emphasizes addressing disparities and ensuring equal access to quality care.
As a sickle cell survivor, I examine how collaboration among the community, policymakers, and innovators can enhance sustainable sickle cell care, thereby helping to close the survival gap among sickle cell warriors.
For all stakeholders in the Sickle Cell Disease Care ecosystem, let’s keep this in mind at every step: how can we improve the situation of Sickle Cell patients and ensure their overall well-being?
Sickle Cell Disease has been variously described as a multisystem disorder; hence, care will also require a multifaceted approach. Beyond the acute manifestation of SCD in the form of bone pain crisis, it also affects the psychological well-being, socioeconomic participation, and family dynamics of the patients. A Sustainable collaborative effort is needed to provide effective care for people living with the disease.
Sustainable Sickle Cell Care will include the following.
- Early genotype and newborn screening. When Sickle Cell disease in a child is detected early, it enables the early initiation of necessary care, including required immunizations, which can help prevent complications in later years. This will also ensure the early commencement of monitoring of the child and the continuous administration of necessary medical care.
- Public Awareness and Information Dissemination. The general public still lacks the basic information about the causes, symptoms, manifestations, and management of SCD. We must therefore develop a sustainable information-sharing model in simple English and local languages that provides basic information about the disorder.
- Emotional and social support: having identified the fact that SCD goes beyond bone pain crisis to include psychological and economic dynamics, our focus in ensuring sustainable care must include plans that take cognizance of patients’ psychological well-being and efforts geared towards improving their ability to earn income to sustain their lives with less dependence on others.
- Long-term patient follow-up: Sustainable care should give the Sickle Cell Disease patient access to health care from birth to old age. A structured health policy is therefore required to achieve this.
To achieve sustainable care, a collaborative effort is required, as no single institution can do it alone. Strategies to achieve these collaborative efforts will include
Community-Based Strategies: Communities are foundational to sustainability, and could be engaged by:
- Mass Education and awareness campaign targeting the grassroots about SCD causes, signs, crisis prevention, and screening. Such a campaign should be in simple language understandable to the target community, preferably in the community’s language.
- Information in the awareness campaign should also focus on reducing stigma and myths associated with SCD and promote genotype testing before marriage so that would-be couples can make informed decisions before marriage.
- Religion is an important area of people’s lives, hence collaboration with faith-based organizations will go a long way in promoting awareness, especially in a country like Nigeria, where we are deeply religious.
- The Basic SCD Care and management should be included in the training of our community health workers and counselors, and they should be well-equipped to discharge this responsibility at the grassroots level effectively.
- Support Groups: In recent years, many of us living with Sickle Cell Disease have decided to take our destiny into our own hands. This single decision has led to the formation of numerous support groups, including Sickle Cell Foundations and Initiatives. From my personal experience, some of these foundations have been responsible for enrolling indigent SCD patients in the NHIS scheme, providing free medications to SCD patients, and even running free Sickle Cell Clinics. In many instances, they have helped raise funds for critical surgeries and other treatments for complications associated with SCD. These support groups need government assistance to do even more within the sickle cell community.
- Supporting affected Children in Schools: Our schools should be a safe place where children with SCD can be supported and their confidence built to have self-esteem despite their SCD challenges. Our teachers, therefore, need to know about SCD; they should not be part of the problem but rather part of the solution in preventing negative stereotypes and myths about Sickle Cell Disease.
Policy-Based Strategies: Strong policies make care accessible and affordable. Our policymakers must therefore develop a process that ensures:
- National Guidelines: Our policymakers must develop and implement a national guideline on SCD management protocol. Such guidelines should be well articulated and implemented in primary health units and tertiary care units. Such a protocol must include newborn screening, access to affordable and subsidized treatment for patients with SCD, and training for health personnel in the management of SCD.
- An Effective and Efficient Blood Donation System: We must have an elaborate system that encourages voluntary donation, a good storage and retrieval process, so that blood is made available when needed, because blood transfusion is a major treatment option for SCD patients. This will go a long way toward improving patients’ survival rates.
- Our health policy must include affordable health insurance for Sickle Cell Disease patients; such a health insurance policy should have no restriction as to coverage, subsidized medicines, and social support services.
- School and Workplace support guidelines should be put in place to ensure that SCD patients in the workplace are not placed at a disadvantage due to their health status, as this will constitute discrimination. Policies should ensure that our children in school are protected from stigma and discrimination.
Innovation-Based Strategies: While innovations improve the reach and quality of care for SCD patients, these innovations should be available, accessible, and affordable to patients. An example of innovations in the care of SCD is bone marrow transplant, which, though available and accessible, is not affordable to the majority of SCD patients in our country. Innovations must therefore be accessible and affordable to ensure sustainability.
Examples of other areas of innovation that we could explore are:
- Integrated Sickle Cell Clinics: Since we have agreed that SCD also involves psychological challenges, it won’t be out of place to have a counseling unit or clinical psychology department within the SCD clinics so that patients could be attended to the same way they see their hematologists.
- Mobile Health Education Tools could be developed and made available through mobile phones; this will help in enlightenment and education on SCD.
- Primary Health Care as presently run should be expanded to include SCD care, and the community health workers program should also include basic care for SCD patients.
Conclusion
- Real Impact for Sustainable SCD Care happens when all players in the SCD care ecosystem work together: communities raise awareness and provide support, policymakers provide structures and funding, healthcare providers deliver high-quality treatment and personalized services, and innovators develop solutions that are efficient, affordable, and easily accessible.
- Sustainable SCD Care is not achievable through isolated efforts. It requires a collaborative framework that unifies community action, government policy, and health providers with the SCD patients.
Together, we can build a system in which people living with SCD receive consistent, dignified, and effective care that enhances their chances of survival and of living a fulfilling life.
Shehu is a sickle cell survivor and can be reached at shehuolaitan@yahoo.com
