I never know how to start a blog post, so let let’s just cut to the chase. Today I’m going to combine two posts because one is fairly small.
There is not much news in the world of MC4r, but some results have been published regarding Rhythm Pharmaceuticals Phase 3 Clinical Trial for Bardet-Biedl Syndrome.
Overall, patients reported clinically meaningful improvements across multiple health-related quality of life measures following 52 weeks of treatment with setmelanotide (Analysis published in Orphanet Journal of Rare Diseases).
From previous blog posts we know this drug is hitting the market, so I’m pleased to see that over the course of a year there was a significant result for patients.
The second thing I was to talk about relates to an article written by Women’s Health Magazine – you can read the article here.
The article relates to a segment of 60 minutes which discussed weight loss drugs and treating obesity as a disease.
So, I don’t watch 60 minutes as I spent 100% of my TV time on Netflix/Amazon Prime but my first note is that I don’t like the word disease. Personally, I feel like it has negative connotations. I prefer condition or disorder. I think if you’re going to do a piece on a person, or multiple people you should be mindful of the language you use.
So, the piece centred around people who tried to lose weight only by dieting. Now this makes sense, people are busy we can’t always prioritise going to the gym or home workouts therefore we default to the element we can control which is our food.
Now, it’s my understanding that during this 60 minutes piece a doctor spoke about weight loss medication that was “safe and effective” that could be prescribe to patients. However, viewers we quick to respond online that she had been paid by the company of this medication to promote the drug which she did not disclose at any point.
I don’t know if this doctor was paid to promote a drug. But, it’s unethical for any doctor to promote a drug as “safe and effective” because all drugs have side effects, especially long term.
Here’s the problem with that, losing weight is one thing, keeping the weight off is another. If we propose scenario A: where this drug is removed from the equation once the weight is lost, would the patient gain the weight back? or; scenario B: where the drug is essentially a life long crutch that helps the patient lose and maintain their weight, what side effective could impact them?
I’ve been on medications and taken off of them because long-term use could damage my heart or kidneys. You can’t say a drug of any kind is “safe” and a doctor should know this.
Now, the part that made my heart sink completely was to see that 60 minute piece did draw attention to obesity being caused by genetic factors, a quote from Dr. Cody Stanford: “The number one cause of obesity is genetics,” but this sent viewers into an online debate where many argued it was lifestyle.
This upset me, because I wanted to feel elated that someone was finally brining light to genetic causes, but to see so many people dismiss it as a cause made me realise just how bad the obesity stigma still is. It was like taking two steps forward and 10 steps backwards.
They’re not wrong that lifestyle plays a part, but they’re not right either. Genetic factors are rare; I say it in every post. But to discount it completely is ignorant. My entire blog is dedicated to a gene called MC4r and we known it exists, and just like any gene mutation if it doesn’t work correctly it shows and it shows in a way that is being stigmatised as the patients fault, not as a disorder that needs to be treated.
I was disheartened by the responses, but I’m grateful to those who argued for the side of genetics and would like to thank these people from the bottom of my heart.
Lifestyle does play a part, I won’t deny this. At my biggest I was a size 20/22 and my smallest a size 10 so I bet you can imagine I had two every different lifestyles. When I was a size 10, I was a competitive rower, walked two hours a day and ate barely nothing. I exercised so much and at such a high intensity I destroyed my body, I now have a life long leg injury and fibromyalgia. I can no longer do high intensity exercise as a result. Yes, lifestyle plays a part, but why does a person with a genetic disorder have to go to such extremes to be another persons idea of “healthy?”
Why does my “lifestyle” have to be toddler size portions and excessive exercise because a person on the internet doesn’t understand my genetics?
Why do I have to deny myself a slice of pizza because a person on the internet will think I’m promoting obesity?
Why do I have to eat a salad at a restaurant when all my friends are eating burgers because I feel like the fat friend, even though I’m the healthiest person at the table?
Educate yourself first. Judge later.
MC4r and ME 