Let’s Do More to Fix Both Food Insecurity and Diet Dilemmas

Out of 120 columns, my most controversial remains “Sugar Does the Trick, But I Won’t Let It Trick Me.” In the May 2018 piece, I critiqued the classic dietary advice that suggests people with cystic fibrosis should stack their diets with sugar to achieve rapid weight gain. I said that packing sugar is an easy answer to weight instability, but that it comes with the consequences of systemic inflammation, plus well-fed bacteria and fungi.

Facebook comments ranged from those who didn’t understand the sarcasm I employed to attack sugar-heavy diets, to those who understood the sarcasm but believed I spoke from a privileged position because a healthy diet can be expensive. When you write a column, you must expect pushback. That’s the gig’s reality. But three years later, I still can’t shake the conviction that the CF community could always pay more attention to diet.

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I often write things to spring myself into action, and a year after I wrote that post, I dropped my hypocrisy by finally taking my own diet seriously. I added more fruits and vegetables while subtracting most sugar. My lung function boosted, my energy skyrocketed, and I generally felt cleaner. Oddly, despite chopping about 750 calories daily, I gained 22 pounds in a year. This was after years, both pre- and post-transplant, of scarfing down about 200 grams of sugar daily and using feeding tube supplements to achieve 3,500-calorie daily goals. In those days, I rarely gained weight and my blood sugar was ever-fluctuating.

Every body is different, but a dietitian later theorized that perhaps all the junk food actually prevented weight stabilization by throwing my gut into chaos.

Who knows? But the only thing that changed in my treatment was my diet. I write this as a theory worth pondering, not a certainty.

Facing frustrating realities

We can’t ignore a major problem even if it connects to the taboo of discussing expensive things. When deeply sick, we don’t ask doctors to hold back from suggesting the most powerful treatments, regardless of their price tags. More often than not, we want the best suggestions, even if they remind us of the sickening financial burden of having a disease.

That said, reader comments made clear that my old column lacked wisdom and unintentionally shamed those already snagged by the anxiety attached to food costs. In December 2019, a Cystic Fibrosis Foundation (CFF) article summarized a food needs assessment that opened my eyes to the need to hold tension between realities and ideals:

“Food insecurity impacts every [U.S.] state and community, and is associated with stress, depression, anxiety, cost-related medicine underuse, low medication adherence, and poor disease control. Conversely, improved food security is associated with better dietary intake and may lead to better disease management, lower health care costs, and overall better health.”

With this in mind, I now wonder not only how we can improve dietary recommendations for people with CF, but also how we can make it possible to follow through with those recommendations, regardless of financial means.

Can we make the world less unfair?

I used to always joke to friends that I wish insurance would pay for my food. But jokes often have a grain of truth.

Imagine how many fruits, nuts, and vegetables a stipend of even $100 monthly could afford. Should there be insurance assistance for those who can’t afford a healthier diet? If food is medicine and can prevent costly health complications, then why not? Aren’t there plenty of reward programs for utilizing preventive care physicians, exercise, and medications? Maybe this sounds crazy until you consider that, for many, insurance already covers sugar-packed liquid supplements like Ensure and Boost, and there’s even a meal planner covered by some insurance plans.

Of course, a “should be” rarely ever works when negotiating with health insurance companies. So, how about nonprofit assistance? There are already nonprofits and federal programs that help the general public obtain healthier food, but they’re fraught with problems, as described by CFF Food Insecurity Committee member GM Brown on the nonprofit’s blog. What if there were a CF nonprofit program geared specifically toward getting healthier, anti-inflammatory, calorie-heavy food to CF patients?

Well, if there’s one thing you’ve learned about columnists today, it’s that they expect pushback, try to be honest but sometimes miss the mark in sensitivity, deal in ideals, and love spitballing questions. But we achieve new realities when we stretch for those ideals. The first step to forming those ideals is awareness of the problem: We have both food insecurity and diet problems. Let’s fix this.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.