I'm taking my gloves off and getting serious about this battle.
Sit down, get a cool drink and follow me on this journey to fight for equitable care and treatment for people with sickle cell disease.
The U.S. Department of Health and Human Services (HHS) - Center for Disease Control and Prevention (CDC) has four goals in its Healthy People 2020 Report . (1) eliminate preventable disease, disability injury and premature death; (2) achieve health equality, eliminate disparities and improve the health of all groups; (3) create social and physical environments that promote good health for all; and (4) promote healthy development and healthy behaviors across every life stage.”
What a wonderful notion; health equity, eliminate disparities and improved health to all. There is one problem with this wonderful notion, it DOES NOT INCLUDE people with SICKLE CELL DISEASE.
Why? I believe research data is being overlooked.
No one wants to talk about death or disability from complications of sickle cell disease, but these facts are real so I must address them. We hear about the loss of a loved one, friend, or associate and are saddened by the news. Thinking about this fact, we can also assume that a person with sickle cell disease has suffered most of their life. This too is sad.
Data associated with the number of deaths and disability related to sickle cell disease is not tracked by any government agency. Data is collected for heart disease and stroke at a national government level, however, there is no data collected for sickle cell related stroke deaths, or sickle cell related heart attacks. What about pneumonia? Data is collected for respiratory infection deaths, but Acute Chest Syndrome, a respiratory complication of sickle cell disease is not tracked either.
Why does this matter?
CDC’s Healthy People 2020 goal to; “achieve health equality, eliminate disparities and improve the health of all groups,” lacks the data needed to justify funding to include people with sickle cell disease. The “group” known as “adult sickle cell patients” is left fend for themselves in a national healthcare system that is inequitable and full of disparities. Just ask about emergency room care, there are horror stories.
How could this have happened?
One area to consider is The World Health Organization (WHO) international classification of diseases and related health problems. Sickle cell disease is classified in Section III - Diseases of the Blood. I see a problem with classifying sickle cell into one category. People with sickle cell are affected by many more “related” sections of this classification. These sections are:
I – Infection (pre-5yrs increased infection risk, spleen dysfunction). V – Mental Disorders (complications of stroke & functional impairment). VII – Diseases of the Eye (retinal detachment). IX – Disease of the Circulatory System (heart attack/stroke). X – Disease of the Respiratory System (acute chest syndrome). XI – Diseases of the Digestive System (gallbladder, liver). XII – Disease of the Skin (leg ulcers). XIII – Disease of the Musculoskeletal System (avascular necrosis, osteoporosis). XIV – Diseases of the Genitourinary System (priapism).
Can you see the problem?
Globally, people with sickle cell disease fall into too many categories to maintain adequate health related data. Sickle cell disease is responsible for more disability and deaths than are recorded. No government agency can keep track of the health related death and disability caused by this disease.
Include "Sickle Cell Disease" in HR 2954 - Health Equity & Accountability Act. (Cystic Fibrosis is included, however, it affects less people than sickle cell disease). This would target sickle cell disease to receive equitable funding for treatment, care & research.
In order for CDC to achieve their goal to; “(1) eliminate preventable disease, disability injury and premature death; (2) achieve health equality, eliminate disparities and improve the health of all groups; (3) create social and physical environments that promote good health for all; and (4) promote healthy development and healthy behaviors across every life stage,” SICKLE CELL DISEASE MUST BE INCLUDED IN THE CONVERSATION AND DATA.