A reception under the auspices of the White House would serve as the catalyst for a fresh approach that brings the needs of patients and their families to the forefront. A key task for this gathering of experts and consumers would be to assess the viability of a national protocol for treatment that includes patient empowerment, often called the “Expert Patient” approachi. This approach, which focuses on training patients and their families in self-management of the disease, is a means to return the focus of Sickle Cell Disease treatment to the patient as a person, rather than treating the patient as the embodiment of a disease. At the same time, it presents an opportunity to lessen the geographic disparities in treatment and to lower the high cost of the disease to families and to the nation.
As you may know, the United Nations passed a resolution to establish June 19th as World Sickle Cell Disease Day and it’s been over 100 years, that James Herrick discovered the abnormal red blood cells that characterize Sickle Cell Disease (SCD). I have a special interest in promoting awareness of this deadly disease that affects 1 in every 400 African Americans. It is a disease that has been overlooked from the national spotlight; in fact, many people believe it has been cured. Although childhood mortality from SCD has dropped and recent clinical trials for bone marrow and stem cell transplants hold promise for an eventual cure, today the average American adult with SCD only lives into their forties.
While there is a significant population of people with SCD in the United States, the worldwide numbers are staggering and increase significantly into the millions. In Uganda alone, 25,000 children are born with SCD each year. In Ghana, 16,000 children born within the last three years have SCD. The disease is not only found in Africa – it affects significant portions of Mediterranean, Latino and Indian populations. It is even one of the most prevalent genetic diseases in the United Kingdom.
Recently, we became aware of the work of Sickle Cell Disease Advocate, Dominique Friend, and of her many efforts to raise awareness about SCD. She has the heart, passion and drive to get the message out that SCD is not just as an illness but a condition that adversely impacts families and communities. We are writing today in support of Ms. Friend’s request that you facilitate a Reception at the White House highlighting over 100 years since discovery by inviting leading international advocates, sickle cell families, faith based leaders, researchers and medical professionals to draw attention to the need for a heightened effort to eradicate this disease.
This is an ideal opportunity to demonstrate American leadership in improving healthcare worldwide. We would appreciate your careful consideration of this request. We are hopeful that the White House will host this reception for SCD this September 2012, which is Sickle Cell Disease awareness month. We hope that you will support this event that will bring SCD out of the shadows and into the light by letting people know that the U.S. will be at the forefront in finding a cure for this worldwide scourge.
