asked questions of her health care providers to see if anything else was wrong. Her well-known and prominent HMO health care providers never pursued any other possible reasons for her symptoms.
Upon hearing about this family’s experience and reviewing her digital health records, I offered my help as a cancer advocate and have attended several doctor appointments. Without my intervention as an advocate for the family, she would have been sent home to die without having any details of the severity of her disease, she would not have been made aware of treatment options, and the family would have been totally in the dark with what is going on with their mother’s health.
The family is now watching their matriarchal leader die. We are hoping her cancer will respond to chemo and we can manage her symptoms to maintain her quality of life. We are praying that the family will have more time with her to share stories, capture her HERstory, and love on her. Hopefully, her son and daughter will heed the warnings, address their symptoms and seek the medical care they need.
This is a true story and unfortunately, this family is a typical Black family, like so many Black families dealing with health issues. Not knowing what we don’t know is killing us, And we are caught in a health care system that does not educate patients, deprives them of critical information and just downright, doesn’t care.
So how do we rectify this madness in our community? Here’s my top 10!
- Talk about health at home, at the kitchen table, at our family reunions, with our elders, with our children. Be open about what’s going on so others can share the knowledge and potentially prevent disease. Know your HERstory and family history. Build a family tree that shows what illness each person suffered. Talk about your numbers (A1C, PSA, Blood Pressure, Cholesterol, etc.)
- Adhere to and challenge the cancer screening guidelines. Stay on top of regular screenings and talk about it with your families so others can share in the knowledge. Frankly, had this Mom and Grandmother been given colonoscopies, she could have potentially prevented her cancer or at least caught it at an early stage. Frankly, knowledge about her predisposition to colon cancer could have helped her grandson prevent his colon cancer.
- Demand the “Golden Rule” standard of care (treating others as they would expect to be treated) from health professionals. When they recommend treatment options, challenge them: “Is this what you would recommend for your family member, for your mom, for your child?” Don’t assume you are getting good care. Assume you are not, ask questions and demand the attention and care that you deserve. We will not achieve true health equity until health professionals practice the “Golden Rule.”
- Learn about the “Black” diseases that impact our community (Colon Cancer, Breast Cancer, Prostate Cancer, Diabetes, Heart Disease, Stroke, Kidney Disease). Check for the risk factors and symptoms. Instead of going to Dr. Google, go to resources like BlackDoctor.org, which will give you the information you need with a Black voice. If you want the best information on breast cancer, check out TOUCH, The Black Breast Cancer Alliance. Build a disease expert panel in your family. Assign a disease to every teenager in the family and have them give reports at family gatherings.
- If you are diagnosed with a disease, get genetic testing. So many of the new medicines being developed are based on genetics.
- Check your health insurance policy! Don’t assume that you have the coverage you need. Unless you are in the military, you probably don’t. Read the fine print!
- Live a healthy lifestyle. You know what you should and should not be eating. Eat the “bad” stuff in moderation. Move your body every day: take a walk, put on those Michael Jackson tunes, and dance like nobody is watching.
- Stay on top of your parents and your children. Make sure they are getting their regular check-ups and cancer screenings.
- Make health conversations part of your family reunions, holiday gatherings and pillow talks.
- And, if you have an illness, know that we can’t advance the science for Black people fast enough. We need better drugs that have been tested on Black bodies. Request the opportunity to participate in clinical trial research. Your doctor probably won’t offer you clinical trials as treatment options so take it upon yourself to ask them. You will get a better quality of care, more supervision and people in trials have better outcomes. For more information on how clinical trials work and why they are critical for our community, go to WhenWeTrial.org.
Let’s change this frightening reality to one of the healthy families talking about how to keep each other healthy versus talking about health while watching our loved ones die.
Ricki Fairley
CEO, TOUCH, The Black Breast Cancer Alliance