Case Study - Using New GLP-1 Article for Patient Advocacy

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Some of you may know that I’m a Board Certified Patient Advocate. I don’t currently do a lot of individual advocacy because my speaking schedule doesn’t allow for the necessary time availability so I typically either work on complex or emergency cases, or on cases that are not strictly timebound - most of these are people who are dealing with a BMI-based denial of care, meaning that their healthcare is being held hostage for a weight loss ransom. This is one of those situations and I am, as always, sharing this story with permission and anonymously by request.

I’ve been working with a patient who needs a Total Knee Replacement which was being denied based on a BMI cut-off. When the patient came to me they had already done everything I recommended for those self-navigating this situation. They had documented, in writing, that their surgeon said they “desperately need” a total knee replacement but wanted the patient to lose what amounts to 43% of their body weight and the stated reason was to “reduce anesthesia risk and post-operative complications.” Their surgeon had recommended the patient go on GLP-1s for weight loss and the patient did not want to take them but also didn’t want to continue to be in pain with severely limited mobility that was getting worse everyday. The surgeon agreed to see the patient again to discuss the case.

When I advocate, some patients want me to step in and talk to their doctor, others want consultation, scripting and/or help writing letters and other communication. This patient was the latter.

This would end up being the first opportunity I had to use the article about GLP-1s for weight loss that I co-authored with Angela Meadows and Louise Adams so before I tell the story, I want to offer some insider information about that research article.

Dr. Angela Meadows is an incredible educator and researcher and is the founder of the International Weight Stigma Conference. I’ve had the joy to know Angela for many years and this paper started when Angela was creating written testimony on GLP-1s for weight loss for an inquiry called “Prevention of Ill-Health - Ob*sity” by the Welsh Senedd (UK government) Health and Social Care Committee. She knew that I had been writing about the research and so we hopped on a zoom call and talked through the highlights of the analyses that I had done. A few months later, the Fat Studies Journal announced that they were putting out an edition focused on GLP-1 drugs and Angela suggested we make the testimony into a journal article. We pitched and they accepted and we were off to the races.

Angela very generously offered me the first author position because the testimony was built on my original analysis. Angela was the senior author - she has loads more experience than I do writing journal articles and Angela did most of the initial submission writing whileI dug into the trials data to create a set a tables for all of the semaglutide and tirzepatide trials that we included that showed the topline findings and the reality about weight loss and side effects, including in the semaglutide cardiovascular trial (we’re coming back to these tables later in this article.)

When we submitted for peer review they came back with a request that ultimately amounted to expanding the trials we included. So we expanded to all of the Phase 3 placebo controlled weight loss trials as well as the semaglutide cardiovascular trial (which we had included from the beginning) and the tirzepatide trial for those with heart failure with preserved ejection fraction. We also expanded our article to include even more information about Novo Nordisk’s marketing practices, at which point the brilliant Louise Adams came on as a co-author as this is one of her areas of expertise. While I was focused on the tables and baseline trial analysis and Louise was focusing on the info around Novo and marketing, Angela did more work digging into the literature, news stories, fact checking, and filling in the gaps, including a spectacular find that the tirzepatide trial for those with heart failure with preserved ejection fraction had changed their PRIMARY endpoint on the 55th revision, 3 years into the trial (perhaps because there were more deaths in the tirzepatide group than the placebo group and they were… not anxious to highlight that).

The paper was accepted and published and I am very proud to have been a part of it. I learned a ton from working with Angela through this process from beginning to end. If it feels like I’m belaboring this point it is because, as I’m first author, some people have taken to calling it my study, which is just not true.

Again, the research article is called GLP-1 medications for weight-loss: a triumph of marketing over patient care and you can find it here.

Back to the patient who needed knee surgery. I want to point out that the methods and conversations I work on for any patient are often very customized based on a combination of factors including the patient’s needs, wants, boundaries, and personality and the personality/behavior of the provider (when I have information about that) In this situation I had more information than I typically do about the provider including, for example, that this surgeon had been very open and honest with the patient, had taken a lot of time talking to her and didn’t make her feel rushed or like an annoyance, and was willing to take time to see the patient again. That is, unfortunately, FAR from being typical in my experience of these interactions.

Also, this experience has a happy ending but it definitely doesn’t always turn out like this. Medical weight stigma is rampant and it harms and kills higher-weight patients and one positive experience should never be used as an excuse to negate or minimize that. Medical advocates like me working with higher-weight patients is a band-aid at best, what we need is systemic change that sees bodies of all sizes as valuable and deserving of care and seeks to get better at caring for higher-weight bodies (including through research, tools, best practices, and provider attitudes), rather than deciding that if people can’t reach a certain BMI or weight then they deserve to suffer and even die. So please feel free to use/adapt this scripting but understand that this is in the US healthcare systems, and even within that healthcare system your experience may vary. Most importantly, know that is NOT your fault, the issue is the healthcare system, and patients (higher-weight or otherwise) shouldn’t have to fight to get care.

Here’s the full experience, the words in quotes are taken directly from a recording the patient made (with the surgeon’s permission) and shared with me, the information not in quotes is summarized from the recording to keep this post from becoming a novel, and the information about the surgeon’s attitude are from the patient’s perspective.

The patient began by confirming that the surgeon’s BMI limit required that the patient lose 43% of their body weight and that the surgeon recommended GLP-1s. The surgeon confirmed and the patient launched into our opening line: “Based on the current trial data for these drugs, what are the odds of my being able to lose 43% of my body weight, and how long will it take?”

To her great credit, the surgeon was honest that she did not know the answer.

At that point the patient referred her to the supplementary tables from Angela, Louise, and my article. The patient pointed out that for semaglutide, the STEP 1 trial only looked at weight loss up to 15% and 49.5% of the subjects failed to lose even 15% of body weight over 68 weeks and in the STEP 3 trial, even when combined with a restrictive diet, 64.3% of subjects failed to lose even 20% of their body weight over 68 weeks.For tirzepatide, the SURMOUNT 1 trial included weight loss up to 25% and 63.8% of the people on the maximum dose (15mg) failed to lose even 25% of their body weight over 72 weeks. In the 2-year weight loss analysis of the SELECT trial ( Ryan et al., 2024) 95.1% of patients failed to lose 20% of their body weight, average weight loss was down to 10%, and at four years the study had lost 89.5% of participants. The patient also pointed out that all of these trials assumed that patients were restricting food and exercising, and that other studies showed significant loss of muscle mass as part of the weight loss.

The patient reiterated to the surgeon that the surgeon’s own words were that the patient “desperately needed” a knee replacement and they asked our final question: “It looks like there is almost no chance that even with two years of these drugs and restricting food and exercise (that I current have restrictions around because of my knee), that I could lose the weight you want me to lose. With the amount of pain I’m in, possible muscle loss both from the drugs and from reduced activity due to pain, and the continued deterioration of my knee, can you help me understand how this makes sense from a risk/benefit perspective?”

There was a long silence from the surgeon. Then she exhaled and said “It doesn’t.”

The surgeon then pivoted to suggesting weight loss surgery, which I had talked about with the patient and so they were expecting. The patient pointed out that the surgeon was concerned about anesthesia risks which would still be a concern with weight loss surgery. The patient also pointed out that her knee issue would “make post-surgical ambulation, which is a key to reducing post-surgical complications basically impossible,” creating even more risk of the post-surgical complications that the surgeon was already concerned about. The patient also pointed out that a weight loss surgery has many short- and long-term risks and complications that the patient did not want to undertake, and that risking complications from two surgeries instead of one was also not something that the patient wanted to do.

The patient then shifted to a list of research that we had prepared from my list of research to fight joint surgery denials. (I also have lists for denials for gender-affirming procedures and lumbar spine surgery.)

The patient said “I understand that there may be a higher complication risk for a knee replacement at my current weight, but there are also serious dangers to waiting for surgery. I also know that there are surgeons who operate on patients my size, though there isn’t one who I can find who takes my insurance. So I’m asking if we can turn this conversation from a denial of care conversation to an informed consent conversation, including things I can do to optimize for surgery.”

It was at this point that the conversation took a pleasant turn (which, again, doesn’t always happen.) The surgeon acknowledged that the patient WAS optimized - they had quit smoking seven years ago, their blood sugar was well controlled and they were already doing seated exercise and working with a physical therapist regularly on their knee and their mobility. The patient and I had talked about pointing these things out but then the surgeon did it for them, so the patient just added the ending we came up with which was “many of these things could change in the future for lots of reasons including if I lost my job and/or insurance. I also understand that risks get higher with age. Wouldn’t it be better to do the surgery now?”

The surgeon said that she would check into things and get back to the patient. The patient threw in one last one of our talking points and suggested that if the anesthesiologist was concerned, perhaps one of the anesthesiologists who do anesthesia for the weight loss surgeries that the surgeon had recommended (and that are done at the same facility,) could step in. The surgeon said “Huh” delivered in a tone, according to the patient “as if it never occurred to her as a possibility.”

After several weeks of waiting and calling the office for updates, the surgeon approved a “one-time exception” to her BMI limit for this patient. Obviously, this isn’t as good as the surgeon changing her entire policy based on the new information she had, but it’s a start.

I certainly hope that others will be able to use Angela, Louise, and my article to support all kinds of advocacy and weight-inclusive work! More than that, I hope that someday it will not be necessary.

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*Note on language: I use “fat” as a neutral descriptor as used by the fat activist community, I use “ob*se” and “overw*ight” to acknowledge that these are terms that were created to medicalize and pathologize fat bodies, with roots in racism and specifically anti-Blackness. Please read Sabrina Strings’ Fearing the Black Body – the Racial Origins of Fat Phobia and Da’Shaun Harrison’s Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness for more on this.