By Keyna Anyiam
I consider myself lucky that my mother is a nurse who has taught me how to advocate for my health, but not all are so lucky, and that is not right. It is no secret that healthcare and bedside manner is disproportionately administered in the United States (i.e. maternal mortality rate of black women versus white women), but during a pandemic, that is made especially clear. I have had a number of friends and family members denied care or whose needs have been disregarded due to their race, socioeconomic status or weight because of COVID-19. If the picture is not clear, let me paint it for you: You are in emergency care along with several other symptomatic people. You have been waiting for over 2 hours, minute after minute you see healthcare professionals taking care of young white women, athletic looking white men, and visibly upper-class people who have come in subtly decked out in designer street clothes. You become aware that your status as a black, overweight, working class citizen does not make you a priority here. To make sure you are receiving fair and equal treatment when your health is on the line, I encourage you to learn how to advocate for yourself in a health setting using the tips and resources below.
When it comes to being your own patient advocate, here are a few tips to help get the care you need:
1) Be an active participant in your health. Share your medications, allergies and any helpful information.
2) Speak up. Trust your gut – you know your body and health best.
3) It is ok to ask for help. Bring someone with you or look for someone with similar symptoms or someone who speaks the same language as you. There is strength in numbers.
4) Be kind to yourself. Try not to be too hard on yourself; your pain is valid.
5) Get involved. Knowing you are not alone is invaluable, share your story and knowledge, it helps! Reach out to patient advocacy groups in your area.
It is important for everyone to learn patient advocacy. Understanding the barriers of proper healthcare can be the difference between life and death. A 2016 case study shared by the National Institute of Health found that some are not given “the chance to advocate for the patients in terms of the rules and regulations given by the facility…” and “Sometimes patients will come and you call the doctor, he refuse to come and say, continue to monitor, but you know something bad will happen if they don’t come and do something.” These types of issues can lead to medical mistakes, which according to John Hopkins Health are the “Third Leading Cause of Death in the U.S.” Unwarranted variation in care and lack of accountability for poor outcomes should not happen, but it can be mitigated with knowledge and working together when speaking with a physician.
Being at the mercy of your health or the health of a loved one can be the source of determination you need to be a great patient advocate. I am reminded during difficult conversations with others, of the power that the Internet, local activist groups and our legislators can exercise to improve our healthcare system. Let facts be your friends. Learn as much as you can and don’t stop. Contact your Maryland legislators and let them know your story. Sharing your experiences and working to change the laws and societal norms that led to them can help other patients get the care they need.