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Sickle Cell Disease, Its Economic Impact: Costs, Controls, and Collaborations

Written and submitted by
Sheila L. Marchbanks, M.B.A.,
SCD Facilitator/SCD Program Director, Loma Linda University Health,
June 22, 2016

Sickle Cell Disease (SCD) is an inherited disease which affects approximately 100,000 Americans and millions of people globally from a multitude of ethnicities. The existence of this global disease has serious economic impact on individuals living with the condition and their care-providers. Counting the costs, examining potential controls to minimize loss of time and money, and discussing collaborations which may support the mitigation of loss will be examined. First, however, a brief summary of SCD will be most helpful. Who does this disease affect? How does it affect individuals?

SCD is not just a “Black Disease”. Yes, the vast majority of individuals affected by SCD are of African descent; however, this blood disorder is found in human beings in many parts of the world. In addition to the high rate of the sickle hemoglobin gene being present in Africa, people in North America, (African-American and Native American), South and Central America, Latin-America, Caribbean, Mediterranean (Greece and Italy), Middle East, India, and Southeast Asia also are affected with SCD. SCD exists in many variants: Sickle Cell Anemia (SS), Sickle Beta Thalessemia (SBT), Sickle C (SC), Sickle D (SD), Sickle E (SE), and Sickle O-Arab (SO) to name the 6 most prevalent.

Each variant has a range of symptoms and complications which presents from severe to mild. The symptoms and complications may have significant consequences that impact an individual’s ability to obtain and sustain employment and realize their full economic potential.

Many Individuals living with SCD suffer from painful episodes, called “Crisis”. These painful crisis are signals that damage may be occurring in the body due to a “log jam” of the sickled red blood cells in the capillaries. Hence, the flow of oxygen to the organs is negatively affected. Together, painful crisis and complications may result in the inability to work consistently, to gain financial security, and to retain resources. In calculating the costs and potential opportunity loss, let’s look at these three areas.

Costs, typically a full-time employee (or entrepreneur) has a finite number of paid sick days per year. Once that benefit is exhausted, the employee (or entrepreneur) may find that the loss of income is quite significant and has a major impact on their lifestyle. This inability to work consistently and its direct impact on earnings lead to both short term and potential long term loss. For instance, if an individual earns $25.00 per hour, each day of lost earnings is equivalent to $200.00 for a full time worker. Over the course of a year, each additional day away “without pay” may present a staggering financial shortage/loss which is irretrievable.

The economic impact of living with SCD may affect multiple levels within a family, the patients as well as parents, spouses, family members, and supporters. The calculation of economic loss is therefore expanded in some families, impacting generational wealth and well-being. So, what can be done?

Protecting one’s health and preventing/minimizing painful crisis along with the resulting complications figure importantly for every person living with this genetic disease.

Controls and collaborative strategies are crucial. No, they will not stop the ravages and reality of this lifelong disease, but there are some positive methods which may be employed to “maximize economic gains” and “minimize economic aches”.

Controls and collaboration can be thought of as actions which may result in better outcomes. Better outcomes which may reduce income loss and contribute to increased and robust funds.

Proactive and powerful behaviors are major keys to mitigating exposure to the risk factors which may have an impact on some painful crisis, and the attendant complications, and time away from gainful employment/service.

Proactive Controls: The 7 Regal Rules-

  1. Rest, 8 hours, plus naps as needed
  2. Relish Water, drink 1 gallon per day
  3. Reduce Infections, get immunizations
  4. Reach for the Folic Acid daily
  5. Read, become an informed patient
  6. Remember moderate exercise
  7. Real Food, eat a healthy diet

Powerful Collaborations: S.I.C.K.L.E. Smart

  1. S-Seek and obtain knowledgeable Medical care
  2. I-Increase understanding & SCD awareness at work
  3. C-Create and/or attend SCD Support Group meetings
  4. K-Keep positive relationships with Mentors and Care-givers
  5. L-Learn Labor Laws-Federal, State, Local, and Employer
  6. E-Educate yourself and all others in your life regarding SCD

In summary, with a reasonable measure of health and the incorporation of these strategies, an individual living with SCD has the opportunity to lead a life with a very positive financial future building a legacy of financial security and retained resources.

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