Sickle Cell Disease(SCD) has been called an ‘invisible’ disease because its disabling effects often aren’t apparent from outward appearances. As a consequence, SCD sufferers often encounter unintentional discrimination based on their handicap - while life activities are often limited by SCD, the typical symptoms of weakness and fatigue are often interpreted as a lack of effort or will rather than as a indication of the need for accommodation to the patients’ needs. SCD places stress on family members, who have to adapt to the limitations that the disease places on the affected individual, and have to cope with the unpredictability of the disease as it affects all aspects of their lives. SCD challenges communities, which often aren’t prepared to cope with the needs of theseindividuals; many people are unaware that the disease still has no cure and that the excruciating pain of acute episodes of the disease can be severely disabling. And the expenses of treatment - getting to and from medical appointments, copayment and coinsurance fees and deductibles, purchasing assistive devices - leaves many families scraping to meet ordinary household needs.
Despite decades of medical and public health efforts, Sickle Cell Disease (SCD) remains largely invisible and vastly misunderstood. As one solution for this growing problem we are requesting the American Medical Association, Secretary of Health and other government agencies call for a fresh, urgent look at Sickle Cell Disease. We desired a patient centered approach that would put strong emphasis on educating the medical providers.
Below we have included the three most important points to get across in a training program to inform health care personnel about the disease.
1) Give a clear explanation of Sickle Cell Disease as it relates to the special treatment needs with which providers may be presented. For instance, the excruciating nature of the pain during a Sickle Cell episode and the likelihood that a patient has developed a tolerance for pain relief medication suggest that a patient should be provided with strong pain killers on request, rather than be forced to suffer through a gradual increase of the dosage to “see what works”.
2) Train providers to never make assumptions about pain or urgency of treatment based solely or largely on the physical appearance and vital signs of a patient. Sickle Cell is not the only disease or condition which doesn’t manifest itself through visible symptoms. As someone who has endured numerous emergency room visits and hospitalizations, I have had much time to observe actions and reactions of medical staff and I realize how often superficial judgments become the basis for triage. There are objective methods of triage, and they should be learned and followed.
3) Finally, and I feel most importantly, health care providers should be reminded that they often have an expert on even the rarest diseases right there in the room with them – the patient. Individuals with a chronic disease usually learn a great deal about the condition and its treatment through repeated experience. Instead of dismissing patient ‘opinions’ medical professionals should be taught to solicit, assess and act on the expertise that the patient is able to share with them.
Again, thank you for your responsiveness to our concerns and for your willingness to take action that will improve services for patients like me. Your assistance is greatly appreciated in supporting the patient centered approach to caring for those living with Sickle Cell Disease. We are looking forward to hearing from you.