How It's Inherited
When will sickle cell and sickle cell patients be treated with the same amount of time, decency, and respect as other major illnesses such as cancer? When will doctors stop giving us the 3rd degree about ER visits and assuming we are being admitted into a hospital just for pain medicine? Pain medicine and fluids are the main things that help us get out of crisis, so why wouldn't we go to a hospital if we are in pain?
Yours is a multifactorial extremely difficult question, which it should not be. You should not even have to ask this question.
Race. There are racial stereotypes in America. African Americans have been associated, primarily by our criminal justice system (America incarcerates more people than any country in the world and African American males more than any other group of people), with drugs and drug use. The “War on Drugs” was a war on African American men and women. There is racism in every corner of America, even the health care system. Not everyone is a racist; some people who would be offended being called racist unconsciously hold racial bias. A huge problem. I don’t need to say more.
The Health Care System. There is a problem with transition from pediatric care to adult care for all people with chronic disease that begins in childhood. This may not seem to be related to the issue, but it is. If there were a functional health care system you would know who your adult doctor would be before you were 18 years old. You would be transitioned to a doctor or clinic specializing in your problems, the clinic would have your medical history and your medical records and know you were going to be their patient before you transitioned.
Adult doctors were not necessarily trained to care for people with sickle cell disease; many adult doctors think they know something about sickle cell disease, which is worse than realizing they don’t know much. You leave your pediatric sickle cell doctor and can’t find a doctor who is willing to accept patients into their practice who have sickle cell disease. Internal medical doctors would like to have patients who have problems they are familiar with and who do not take up too much of their time. If they have complex patients they would like to be reimbursed for the extra time they spend taking care of them. This issue could be addressed by reimbursing doctors for the time they spend caring for patients with complex problems.
Since you do not have doctor, you are forced to go to the emergency room, the most expensive and least able to care for people with a chronic health problem. If you had a primary care doctor, if there were day hospitals to care for you when you were ill, you probably would find yourself in an emergency room much less frequently. You would probably not be hospitalized as frequently either. You would have what health care providers like to call a “Medical Home” where there are people who know you, who know your medical problems, and who are there to help when you need help.
These problems are relatively new for sickle cell disease, as three decades ago people did not survive to be twenty-one years old. Until there is the will to change the system on the part of the legislators and medical establishment these problems will not be solved.
Join an advocacy group. Help teach the medical community about sickle cell disease, let the patient advocate at your hospital know about your treatment. Let your government representatives know about these issues. They are not just medical issues they societal and need to be addressed as such. Don’t expect things to change overnight. Never give up the fight for justice, dignity, and equality.
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