CFReSHC’s Social Media Manager, Alicia Casals, attended the meeting at the North American Cystic Fibrosis Conference, and provided us with this summary:
‘I joined the CF NACFC 360 workshop, ‘Emerging Weight Management Topics in CF.’ At first the workshop discussed the evolution of CF weight trends and challenges amongst pediatric and adult CF patients with the large population use of modulator drugs then shifted to why and how current weight “diet” standards and recommendations are outdated and do not work for healthy weight sustainability. I should note that there are some who are unable to take modulators and who have not seen weight gain. This talk really resonated with me and I felt validated after attending the discussion.
Tatiasy-Petrongian, RD, GLC, CSP of UCSF-Fresno shared the evolution of CF weight trends and the nutrition challenges faced by many since the introduction of modulator drugs. Past strategies such as the ‘CF diet,’ of highly processed foods, large inclusion of snack foods, candy, cream, butter, supplements if accepted, and increased intake of sugary drinks are no longer a sustainable treatment plan. While modulators have impacted weight gain, the lack of activity during the pandemic and poor eating habits may have also played a role in weight management issues. There is data showing that when patients first start modulators, weight gain is slow and balanced yet, after a year there seems to be a huge increase in weight gain. Not only could this be due to the pandemic, it could also come from the outdated ‘CF diet,’ and the presenters highlighted a shift from focusing on weight (ie: the number on the scale) to an overall way of health. Calories just for calories is not sustainable or healthy. It is important to mention that weight gain can lead to obesity, heart disease and fatty liver.
Cami Jo Satterthwaite RD and Kelly Stewart MS RD from the University of Utah Adult CFCenter in Salt Lake City, UT discussed the ‘Healthy at Every Size’ or HAES approach. HAES emphasizes: weight inclusivity, health enhancement, respectful care, eating for well-being. They stressed that diet culture in any shape or form, whether it be social media or medical, needs to be eliminated. Establishing new habits full of healthy behaviors is key: making better choices, moving more, not withholding any food, and learning to accept our bodies. A big point is to stop looking at the scale or BMI because they are not an accurate guide to one’s true physical health. As weight increases often one’s body image is declining. While once pancreatic insufficient CFers could eat whatever/whenever they are facing new challenges physically and mentally. I am pancreatic sufficient and I have the opposite issue as I struggled with my weight pre modulators.
Historically the BMI was created by Adolphe Quetelet, a Belgian mathematician, to describe the social ideal during the Eugenic movement. The Body Mass Index or BMI was adopted by insurance companies in the 1940’s so they could charge more for obesity. In 1995, a WHO task force decided a BMI less than 27 was healthy and in1998 the US definition changed that to under 25. Research identified adverse effects of using weight as a target outcome such as distraction from other health determinants, eating disorders/food and body preoccupation, inadequate nutrient intake, decreased metabolic rate, and increased mortality risk. I do think it is worth pointing out that the number is not necessarily an indicator of health but a construct set by insurance companies. There are better health indicators beyond the BMI.
Here is my take away: current recommendations and tools used to diagnose and treat weight are outdated and not working. Taking a weight neutral approach versus weight centric approach, increasing physical activity and fitness, and focusing on an intuitive eating approach seems to be good starting places. Reflective listening from practitioners is crucial that includes being supportive and empathetic without judgment. Instead of prescribing a restrictive diet and constantly discussing weight and weight, dietitians and social workers are flipping the script by discussing the emotions attached with weight and body image. This focus is on the foundation of healthy nutritious positive eating versus counting calories and diet restrictions. Small habit changes can help the mind and body. The presenters recommend focusing on the positive: muscle gain, positive lab work, better habits, and positive mental awareness. The best way to do this is intervention, prevention, and treatment.
After attending this presentation, I found myself validated and excited for the future progress of CF nutrition. I am encouraged that the discussion is changing and the research is being done. I have long felt a different approach would be beneficial to me and others like me. While much focus has centered on CFers underweight, those on the opposite end of the spectrum were ignored. As a CF patient that is pancreatic sufficient, I have never felt the support from CF dietitians, instead they only ever focused on weight gain.I am truly excited that new guidelines and a better understanding and approach of weight, nutrition, and health are currently being researched and discussed amongst the CF medical professionals. We are in exciting times, the CF world is truly changing every day, every hour, every second. The hardest part of this new world is waiting on the research because we just don’t know enough. We are living through these major medical advancements but it will take a few years to truly understand all the outcomes. All we can do is keep an open dialogue with our medical professionals, and stay up to date on the latest data as best as we can. In fact all we can do is exactly what the speakers advised with a quote from Maya Angelou: ‘Do the best you can until you know better. Then when you know better, do better.’ “