Sickle Cell Anemia & Health Disparities. Everardo Cobos, MD Hematology Division Summer Seminar on Health Disparities. Sickle Cell Anemia & Health Disparities: outline. Review of sickle cell anemia Brief review of health disparities Interplay between sickle cell anemia and health disparity
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Everardo Cobos, MD
Summer Seminar on Health Disparities
Sickle Hemoglobin Haplotype Distribution in Africa. The three major ßs-globin haplotypes found in Africa are shown. The distributions represent the highest concentrations. The genes are expressed at lower frequency outside the highlighted zones.
Sickle Hemoglobin Haplotype Distribution in the Middle East and India. The ßs-globin haplotype found in the Middle East and India are shown. The haplotypes are identical in the two areas. The gene probably originated in India and was carried to the Persian Gulf area by trade and migration.
Recurrent Pain Episodes or Sickling Crises
Sickle Cell Disorders
Other types of Hb combine with sickle Hb
injustice in health care is
the most shocking and
Martin Luther King, Jr
Differences, Disparities, and Discrimination: Populations with Equal Access to Health Care
The Operation of Healthcare
Systems and the Legal and
Discrimination: Biases and
Prejudice, Stereotyping, and
Populations withEqual Access to Health Care
Racial and ethnic disparities in health care exist and, because they are associated with worse outcomes in many cases, are unacceptable.
Racial and ethnic disparities in health care occur in the context of broader historic and contemporary social and economic inequality, and evidence of persistent racial and ethnic discrimination in many sectors of American life.
Many sources – including health systems, health care providers, patients, and utilization managers – contribute to racial and ethnic disparities in health care.
How could well-meaning and highly educated health professionals, working in their usual circumstances with diverse populations of patients, create a pattern of care that appears to be discriminatory?
Possibilities examined: bias (prejudice), uncertainty, stereotyping
President Richard Nixon surprised many in his health message by putting sickle cell disease into the glowing spotlight of presidential politics. He said, "There are moments in biomedical research when problems begin to break open and results begin to pour in. We believe that cancer research has reached such a point. A second targeted disease for constrained research should be sickle cell anemia. It is a sad and shameful fact," he said, "that the causes of this disease have been largely neglected throughout our history. We cannot rewrite the record of neglect, but we certainly can reverse it."
Funding: by putting sickle cell
There are huge disparities between the amounts of federal dollars allocated to sickle cell when compared to other disorders. For example, there are three times as many babies born with SCD than with cystic fibrosis, 8,000 versus 2,500. For every baby born with cystic fibrosis there are $2,733 research dollars spent to find a cure in contrast to $345.58 spent for every baby born with SCD (National Institutes of Health)
Treatment of Sickle Cell Pain by putting sickle cell
Fostering Trust and Justice
William T. Zempsky, MD
The following scenario serves as an example of an emerging literature on injustice in health care.
A 19-year-old man with sickle cell disease presents to the emergency department with progressive leg and back pain. His hooded sweatshirt is pulled over his eyes, he is wearing headphones, and is singing along to an unheard tune. His attempts to manage his pain at home have been unsuccessful and he tells the nurse that his pain is a 9 on a 10-point scale. The nurse responds with apparent disbelief and says "Really?" then sends the patient to the waiting room where he sits for several hours before seeing a physician. The patient's request for a specific dose of morphine is met with doubt and disdain.
This patient is stigmatized as a drug seeker or abuser, with little consideration for the complexities of his pain. Justice in this context is . . .
I woke up in severe pain.
I tried to control it, but in vain.
I went to my primary care physician
Hoping to achieve a remission.
He said, "You are a drug addict,
And that's my verdict.
I do not believe what you say.
There will be no prescription today.
You did not keep the terms of our agreement
And, hence, there will be no treatment.“
I dragged myself to the emergency room.
There I was also met with doubt and gloom.
I had to go through triage
And wait for release from my quayage.
Hours passed at a pace that was slow
But my pain continued to grow.
Sleepy, hungry and thirsty, I collapsed.
I opened my eyes with my pain enhanced.
They said I had a seizure,
In addition to a high fever.
They rushed me into a stall
And treated me with diminished gall.
Finally, I received pain meds with some relief.
This greatly reduced my grief.
They decided to admit me to the hospital
A decision that was most acceptable.
I was happy to come to the end of my ordeal
And to be treated with respect and more zeal.
But I am most thankful to the seizure.
It made a doubting physician a believer.
Bioethicists Examine Trust Toward Physicians Among Adults With Sickle Cell Disease
Main Category: Biology / BiochemistryArticle Date: 04 Jun 2010 - 18:00 PDT
Posted: February 10, 2010 Hematology News
Access to care, pain relief still problems for sickle cell patients
Even though expert panels recommend hydroxyurea therapy and clinical trial data assure its safety and efficacy, confounding barriers continue to restrict its use.