Collaborative strategies for sustainable sickle cell disease care

June 19 of every year has been designated as world sickle cell day by the United Nations since 2008 to raise global awareness about the disease as a public health concern. This year’s theme is, “Closing the Survival Gap: Equity in sickle cell Disease”. The theme emphasises addressing disparities and ensuring equal access to quality […]

June 19 of every year has been designated as world sickle cell day by the United Nations since 2008 to raise global awareness about the disease as a public health concern. This year’s theme is, “Closing the Survival Gap: Equity in sickle cell Disease”. The theme emphasises addressing disparities and ensuring equal access to quality care.

As a sickle cell survivor, I examine the effect of collaboration between the community, policy makers and innovators in enhancing sustainable sickle cell care, thus helping in closing the survival gap among sickle cell warriors.

For all stakeholders in the Sickle Cell Disease Care ecosystem, one of our key concerns at each point of our discussion should be, what can we do to improve the situation of the Sickle Cell patients thus ensuring their total wellbeing?

Sickle Cell has been variously referred to as a multi-system disorder, hence the care will also require multifaceted approach. Beyond the acute manifestation of SCD in the form of bone pain crisis, it also affects the psychological well-being, social-economic participation and family dynamics of the patients.  A sustainable collaborative effort is, therefore, needed for the effective care of people living with the Disease.

Sustainable sickle cell care will include the following.

• Early genotype and newborn screening. When the sickle cell statue of a child is detected early, its helps in the early commencement of necessary care, especially various immunisation required, which can help prevent complication in later years. This will also ensure the commencement of early monitoring of the child and the administration of necessary medical care continuously.
• 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 which will provide basic information about the disorder.
• Emotional and social support: Having identified the fact the SCD goes beyond bone pain crisis to include psychological and economic dynamics, our focus in ensuring a sustainable care must include plans that take cognizance of patient psychological wellbeing and efforts geared towards improving their ability to earn income to sustain their lives with less dependence on others.
• Long Term patient follow-up: A sustainable care should be one that gives the sickle cell disease patient access to health right from birth to old age. A structured health policy is, therefore, required to achieve this.

For a sustainable care to be achieved, a collaborative effort is imperative as no single institution can do it alone. Strategies to achieve these collaborative efforts will include

1. 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 campaign should be in simple language understandable to the targeted community preferably in the the local 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 couple can make informed decisions before marriage.
• Religion is an important area of people’s lives hence collaboration with faith-based organisations 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 effectively discharge this responsibility at the grassroots.
• Support groups: In recent years many of us living with sickle cell disease have decided to take our destiny in our own hands. This singular decision has been responsible for many support groups in the form of various Sickle Cell Foundations and Initiatives. From my personal experience some of these foundations have been responsible for enrolling indigent SCD patients on the NHIS scheme, providing free medications to SCD patients and going as far as running free sickle cell clinics. In many instances they have helped in raising funds for critical surgeries and other treatment of complication associated with SCD. These support groups need to be assisted by the government to do even do more.
• Supporting affected children in schools: Our schools should be places where children with SCD can be supported and their confidence built to have self-esteem despite their challenges. Our teachers, therefore, need to have knowledge about SCD. They should not be part of the problems but solution to preventing negative stereotypes and myths about sickle cell disease.

2. Policy based strategies: Strong policies make care accessible and affordable. Our policy makers must develop a process that ensures:

• National guidelines: Our policy makers must develop and implement a national guideline on SCD management protocol. Such guideline should be well articulated and implemented from the primary health unit to the tertiary care unit. Such protocol must include newborn screening and access to affordable and subsidised treatment for SCD patient and training of health personnel on the management of SCD.
• An effective and efficient blood donation systems: We must have an elaborate system that encourages voluntary donation, a good storage and retrieval process so that blood is made available when needed considering the fact that blood transfusion is a major treatment option for SCD patients. This will go a long way in improving the survival rate of patients.
• Our health policy must include affordable health insurance for sickle cell disease patients, such health insurance policy should be one that have no restriction as to coverage, subsidised medicines and social support services.
• School and workplace support guidelines should be put in place to ensure that SCD patients are not placed at a disadvantage position in their workplace due to their health status, as this will constitute discrimination. Policies should ensure that our children in schools are protected from stigma and discrimination.

3. Innovation based strategies: While innovation improves reach and quality of care for the SCD patients, such innovations should be available, accessible and affordable to the patients. An example of innovations in the care of SCD is bone marrow transplant, which is though available and accessible is not affordable to the majority of SCD patients in our country. Innovations must be accomplished with accessibility and affordability to ensure sustainability.

Examples of other area of innovations 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 counselling 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 should be expanded to include SCD care and community health workers programme should also include basic care for SCD patients.

Conclusion  

Ø Real impact for sustainable SCD care happens when all players in the SCD care ecosystem work together: communities provide awareness and support, policy makers provide structures and funding, health care providers offer quality treatment and personalised services, innovators innovate solutions that are efficient, affordable and easily accessible.

Ø Sustainable SCD care is not achievable through isolated efforts. It requires collaborative framework that unify community action, government policy, and health providers with the SCD patients.

Together, we can build a system where people living with SCD receive consistent, dignified and effective care that enhance their chance of survival and living a fulfilled life.

 

Shehu, is a sickle cell survivor and can be reached at [email protected]