The following is an address delivered to the Eighth Caribbean Sickle Cell Conference in Saint Lucia on Sunday October 27, 2012
In modern times, investing in symbolic identity has helped to crystallize humanity’s interest and, yes, thanks to forensic evidence that acknowledges a strong probability that Egypt’s King Tut suffered from sickle cell disease (SCD) and likely died at the age of 19 years as a result of its complications.
The authenticity of the matter is such that SCD is a genetic disease. It is an inheritable disorder and a chronic disease that is not acquired through alternative lifestyle choices.
It affects individuals and family’s quality of life, their economic well-being and subsequently impacts society with overburdening problems at incredible cost.
Regrettably, this occurs in many ways, including psychological, social, financial, chronic disease management, research and policy formulation that requires special treatment. Quite rightly, the World Health Organization (WHO) has declared SCD a public health priority. The United Nations resolution of 2008 declared, “Sickle Cell is a Global Health Problem!”
But here’s the issue: it is a little over one hundred years since the first report of sickle cell hemoglobin (HBS) was reported globally. Today, there is still no cure!
This is frightening and appalling!
Despite the attention received by WHO and the UN, little attention from elsewhere has been paid to direct policy decision or research. The allocation of financial and human resource capital geared towards research and clinical programs for SCD is grossly inadequate. Unfortunately, this has contributed to the negative social belief; psycho-social cost, socio-economic distress and emotional problems that influence patients’ quality of life.
And, if permitted unabated, this silent chronic disease SCD has the potential to become a health catastrophe that will eventually increase medial cost and affect unfavorably, patients and families living in marginalized socio-economic status.
The socio-economics of SCD encompass a series of irregular interruptions that are challenging towards economic output, academic success and career options. When this happens it is often associated with cost restraints, a lack of awareness, training and appropriate resource allocation to educators and learning institutions.
The irregularity of the chronic conditions last for days or weeks; more often than not requiring hospitalization and the administration of narcotic pain relievers, hydration, blood transfusion and physiological counseling.
The latter of which is most often invisible. And that’s where family support can make a difference to sustain socio-economic development and help patients integrate and contribute to society.
The choice of work and the environment in which SCD patients are able to obtain work is a major concern. People with SCD are advised to avoid physically strenuous work, exposure to extreme temperature or low oxygen concentration, large crowds, smoke filled environments and second hand smoke.
The adverse consequence of which are numerous sick days away from work, a stalled career, stress factors and eventually lost economic opportunities.
Sadly, SCD has an accredited distinction as the most commonly occurring genetic disease in the world. This is a medical condition that demands special care and frequent use of health services and equipment, that must withstand a heightened state of readiness, throughout the natural life of patients.
So where does this lead? Let’s examine and provide some solutions!
SCD is not a conventional disease and to date is uninterrupted once it has occurred.
Yet, in 2012 there is still no cure! Whilst families have to suffer in silence from depression, anxiety and other side effects of this disease.
In terms of an explanation, the trend has been heading towards continual health education, mass screening and to identify the carriers, including premarital and genetic counseling.
The frequent movement of people also magnifies the need for a national screening program, aggressive outreach and information dissemination to prohibit the increase of both SCD and other chronic diseases among the population.
Today, patients have a considerable longer life expectancy, and this may very well be a consolation to the insurance companies; therefore it is important that there is a continuation of programs to identify and address socio-economic matters for those living with SCD.
The merit of this is on the socio-economic impact of SCD that has the potential for a more difficult scenario, if patients and families are without the basic prerequisites to step up, and eventually improve their situation.
After all, this shouldn’t have to be difficult to understand knowing that the treatment for complications of SCD may include kidney dialysis or transplant, drug rehabilitation, psychological counseling, gall-bladder removal, hip replacement surgery or surgery for persistent painful erection, eye surgery or surgery for leg ulcers, a very common but treatable occurrence.
In these situations being self employed through entrepreneurship with medical insurance and benefits help lower the cost, and lower tax burdens for everyone else. This is very important due to the fact that, when patients and their families are not contributors to the economic mix, there is a potential negative effect on economic output.
Therefore it is critical that primary health programs, including health insurance companies and specific human resources, are made available at community level, and are dedicated to the prevention, care and effective management of service in a timely manner. This would facilitate the stability that patients depend on towards personal economic development and subsequently contribution to society.
The fundamentals of this prerequisite is simply to treat, and limit the frequency of what is known as a “sickle cell crisis,” that enables frequent use of emergency room resources, and helps reduce the cost of delivering this service. There is need to work hard on this as innovative health care providers and creative employers.
That means, finding savings to lower the burden on tax revenue, increase productivity, and an improved quality of coordinated care systems that help improve a higher quality health care and living standards.
In the case of Saint Lucia, universal health care (UHC) should pilot incentives to health care providers to lower delivery cost with reform that will include in the protocol the Saint Lucia Sickle Cell Association’s recommendation for the management of patients with SCD as standard care.
This is one option that would help curb the despicable socio-economic cost that averages EC$3,000 per month, per patient, plus family costs for support services and care, lost productivity and time from work, in addition to inpatient hospitalization of 3-6 days per “sickle cell crisis.”
Right now and for years, the combination of medical services and community pioneers in the person of Dr Jacqueline Bird and president of the Saint Lucia Sickle Cell Association, Paula Calderon, along with their network, perform essential services, working tirelessly for better detection and treatment at no direct cost to SCD patients and their families.
Notably, your service to humanity is commendable. Meanwhile, as your services take some pressure off SCD and this global health problem, it is equally important that public health care institutions further the cause and make certain that policy, human resources, facilities, medical diagnostic, treatment, and particularly the management of public health and health care cost work in harmony to provide SCD patients with the service they deserve.
To get to the bottom of SCD, there is need for increase education, public awareness, and increase funding for training and research. Of course, the Caribbean Organization of Sickle Cell Associations and the Saint Lucia Sickle Cell Association need much help and assistance for the clinical services they provide (through the goodwill of mankind at great personal cost); and their effort to make available an entrepreneurship development program towards SCD patients and their families for economic advancement.
But there are a lot of SCD issues that have to be completed together; this will not be easy, but civilization has a duty to make available comprehensive care for its citizens and in the case of Saint Lucia this alludes to universal health care (UHC), and to include prompt treatment and access to insurance coverage, with no preconditions attached for SCD patients and their families.
It‘s about time that gap should be closed. Therefore, there is need for an educational scholarship fund to assist SCD patients and their families to help break the cycle of poverty and marginalized status.
By the same token, there is need to lobby policy and decision makers for a social safety net via the implementation of an exemption policy for patients and families with SCD and other chronic disease.
These targeted exemptions would serve best on pharmaceuticals, medical supplies, personal care supplies and equipment, medical clothing, educational supplies and nutrition aid for newborns and mothers.
And, in view of the fact that SCD causes frequent “sickle cell crises” that require frequent medical consultation, now is the time for policy- and decision-makers to show true compassion and socio-economic social justice buoyancy, that will positively impact the lives of SCD patients, their families and the general public.
How these solutions develop remain to be seen. But what is most desirable is that goodwill and courage from civic, policy- and decision-makers speed up their response with high quality advantage plans and a cooperative willpower to enact universal health care (UHC) in Saint Lucia without any further indecision and take part in the global structure to help solve humanity’s chronic neglected diseases.
The opportunity is now at the Eighth Caribbean Sickle Cell conference for the policy- and decision-makers to act with purpose and make a commitment to free the SCD patients and their families from their pain and hardship; and to make amends for decades of neglect.
This is the morally and socially responsible approach to take, with measures that equate to economic development and growth.
Melanius Alphonse is Chairman Sickle Cell Miracle Network and the Jules Foundation