Every time I sit down to write, I ask myself what I want from my readers. Usually, I want to simply educate. Today, I want to make you all mad. I want to make you so mad that you share this blog post with everyone you know so that they get mad, too. Once we get mad about it, we will be able to join together to support a positive change, just like other aspects of the BLM movement.
So, what am I so fired up about?
About two months ago, I took a new position as a renal (kidney dialysis) dietitian. I knew slightly more about what all that entailed than my average reader does right now. I did know that the renal diet was the most difficult diet I had ever heard of, and learning it as a registered dietitian did not even make it easier. When a person is on dialysis, they are expected to eat more protein than the average person, but to limit potassium, phosphorus, sodium, calcium, and overall fluid... All fluid, even water or foods that turn into fluid, like popsicles or soup. Many individuals on dialysis are also diabetic, so they have to also watch their carbohydrate intake. Others have cardiac issues and therefore must additionally be cognizant of their saturated fat intake. I am constantly asked, "So what can I eat?"
To further complicate matters, phosphorus is in every single source of protein. In fact, good luck finding much to eat that does not contain phosphorus. Phosphate additives are put in products to enhance their flavor and mouthfeel. It is the reason your Velveeta melts, your pork is juicy, and your Pepsi is just right. I won't explain in this blog post why it's important to limit phosphorus in your diet if you are on dialysis, but just accept that it is very important for bone and mineral health. Now, find any product in your kitchen or at the store and look at the nutrition facts label. There's sodium, potassium, protein, carbohydrates labeled... But no phosphorus to be found. Unfortunately, on top of all of this, organic sources of phosphorus are only partially absorbed by our bodies, while phosphate additives are absorbed 100%. As a dietitian, I cannot even help my patients know what are better products for them comparatively because the milligram amounts are not provided. The only way that I can tell if there are larger amounts is by seeing if there is an ingredient that starts with "phos" higher in the list of ingredients. This should not be a guessing game when it can drastically affect so many lives. The best I can do is tell my patients to shop for as many fresh foods and cook at home as much as possible. This is no small task for many individuals with other health and financial concerns.
Instead, let me tell you what happens. We put patients on a pill that we call a phosphorus binder. There are a few variations of these pills. Some cause GI upset, constipation, high iron, high calcium, or just add to overall pill burden. The average dialysis patient takes 19 total pills a day. Phosphorus binders must be taken with every meal and snack, every day. I have seen some prescriptions for 4 pills each meal. The best and strongest binder available is Velphoro because it is only one pill a meal and can be chewed or broken and swallowed. There is no generic for this medication yet, and to purchase it outright without any insurance is around $2,260 per month. Luckily, many insurances have very reasonable copays for patients, but for those who do not, they must suffer with handfuls of pills with each meal, side effects, or just give up and let their phosphorus continue to run high, causing additional issues.
Ok, hold up... it's clear that phosphorus needs to be put on the nutrition facts label, but why is this a race issue?
Simply repeating information from the CDC (https://www.cdc.gov/kidneydisease/publications-resources/ckd-national-facts.html), more than 1 in 7 adults in the U.S. are estimated to have chronic kidney disease (CKD). 9/10 of them do not even know that they have it. According to the NIH (https://www.niddk.nih.gov/health-information/kidney-disease/race-ethnicity#:~:text=While%20African%20Americans%20make%20up,kidney%20failure%20among%20African%20Americans.), African Americans are four times more likely than white, non-Hispanic Americans to develop CKD. Even though they make up around 13% of the U.S. population, black Americans account for 35% of the patients with CKD.
I started researching this when I noticed how many black patients I had in my little Midwest clinic. I identified that 25% of my patients on dialysis were black, while the black population of my town is only 21%. This disease is disproportionately affecting our nation's black population, and what are we doing about it? Instead of education, targeted for diabetes and hypertension prevention (the two main causes of kidney failure) early on and throughout childhood, we are calling those with predispositions for kidney failure "non-compliant" when they fail to follow this incredibly difficult diet and don't want to take so many pills all day long, or even come to treatment for sometimes 4 hours a day, 3 days a week.
When there was an uproar concerning gluten being put on nutrition facts labels, the food industry responded very quickly. About 1% of Americans have Celiac disease and were able to cause enough of a protest to get gluten labeling on all food products. 15% of American have CKD and have the right to know how much phosphorus is in products so that they can make the best choices for themselves.
Please, I implore you, get mad with me about this. We need to see a drastic change in our school nutrition education program to help our black community lower their risk of this horrible disease by first lowering their risk for diabetes and hypertension to begin with, AND we have got to see phosphorus added to the nutrition facts label. Prevention for those who have a chance; better management tools for those who already suffer.
Black lives matter.