Meet Alecia Smith, a remarkable new member of the Obesity Action Coalition (OAC) who is taking the bull by the horns as an advocate for others navigating the challenges of obesity.

Alecia’s path to supporting the OAC began with a simple scroll on social media when she saw a post of ours on Facebook and shared her story in the comments. Little did she know, this simple act would lead to additional opportunities to share her story with lawmakers and educate others on the complexity of obesity that warrants affordable, equitable access to care.

We sat down with Alecia to learn more about her personal journey with obesity and the passion she’s discovered for advocacy.

Can you share more about your journey with obesity and the defining moment that motivated you to make a change?

As a teenager, I was diagnosed with PCOS (Polycystic Ovarian Syndrome) and insulin resistance despite being of a healthy weight. Unfortunately, I wasn’t given much education about these conditions or what steps to take. The solution offered was simply to take birth control pills to regulate my periods. It wasn’t until my college years that the symptoms of PCOS and insulin resistance began to escalate, including weight gain.

After college, while working night shifts as a new nurse, my weight continued to climb. Despite many attempts over the past 15 years to lose weight through diet and exercise, I found myself stuck in a cycle. Then, in 2020, my lab results indicated that I was closer than ever to being diagnosed with diabetes, which was a terrifying wake-up call. Realizing that I was approaching 40 and facing the prospect of a life with chronic diseases, I knew I had to act immediately.

However, my turning point didn’t occur in a doctor’s office. It happened during a trip to beautiful Maui, Hawaii. My family had set out on a popular hike, which I was eager to join. But as I reached the entrance, I was already so out of breath that I couldn’t continue. I had to sit down while my family completed the hike, watching countless people of all ages pass by. It was a deeply emotional moment, filled with anger and sadness at how my weight and health were limiting me at such a young age.

Upon returning home, I immediately scheduled an appointment with a bariatric medicine specialist and developed a plan to address my weight. Over the course of 11 months, I managed to lose 100 pounds through a combination of diet, exercise, and an anti-obesity injectable medication. This medication provided me with the freedom from constant thoughts about food, allowing me to focus on building healthier habits. I truly believe it was crucial to my success, not only addressing my obesity but also the underlying issues of PCOS and insulin resistance that had troubled me since my teenage years. As a result, I not only lost weight but also reversed my pre-diabetes and regained the ability to run/jog regularly pain-free for the first time in years.

Your recent advocacy work with the OAC includes speaking at a virtual congressional briefing and on Capitol Hill to support the Treat and Reduce Obesity Act (TROA). How do these experiences impact you personally, and what message do you hope to convey to lawmakers?

My advocacy work became part of my journey with battling obesity. It not only gives me confidence but holds me accountable and reminds me that many others share similar struggles, so I’m not alone. Initially, I felt embarrassed about my success with medication, almost as if admitting failure for not being able to lose weight solely through diet and exercise. I had to work through those feelings before meeting with lawmakers. With the OAC’s support, I reminded myself that obesity is a complex, chronic disease, warranting the full spectrum treatment options akin to other conditions like diabetes or hypertension. Medication played a crucial and valid role in my journey, and this is what I want to show others.

My goal is for lawmakers to recognize the complexity of obesity as a chronic disease and get them to understand the outdated nature of current laws compared to scientific advancements and treatment of other chronic diseases. TROA would ensure equitable and affordable access to comprehensive treatment options for Medicare recipients. As someone who is not yet eligible for Medicare, I understand that changes in Medicare often influence private insurers, potentially benefiting individuals of all ages. I believe lawmakers need to hear that the topic of obesity is important to voters from all parties and that it is a growing, costly concern for our nation.

How have medications played a role in your weight-loss journey, and what challenges have you faced with insurance coverage for these treatments?

I was able to receive my injection medication from September 2022 until August 2023. Unfortunately, I had to discontinue it due to the cost. My employer’s insurance coverage did not include any modern anti-obesity medications. Fortunately, I managed to obtain a manufacturer coupon that reduced my monthly payment to $25, which I paid out of pocket for the entire 11 months. However, during those 11 months, I occasionally had to skip weeks of injections because the medication was on backorder at my pharmacy, forcing me to stretch out my supply.

When I went to refill my prescription during the 11th month, the coupon’s terms had changed, raising the cost to $550 per month. I panicked, realizing I couldn’t afford that. Despite my efforts to find cheaper alternatives or request assistance from my insurance, I was unsuccessful. So, as I took my last injection, I was fearful of what life would be like without this medication.

Being off the medication has taught me that maintaining my weight-loss shouldn’t be this challenging. I sorely miss the sense of control over my eating habits that the medication provided. Now, I find myself spending an excessive amount of time thinking about food and talking myself out of poor choices. Despite the daily struggle, I’ve managed to keep the weight off and maintain my 100-pound weight-loss.

My ultimate goal is to resume my anti-obesity medication regimen to work toward achieving a healthier BMI for my height and prevent a recurrence of pre-diabetes (despite not gaining weight, my diabetes markers climbed back up to near pre-diabetic levels). However, without assistance from my insurance company, I don’t see this happening. I’m not expecting it to be free; I just want to make it an affordable part of my life. I am worried about my health without it, but I remain hopeful that both our government and private insurance companies will recognize the undeniable benefits these medications offer to the health of their beneficiaries.

As a healthcare professional, how do you balance your personal health and your advocacy efforts to support patients facing similar challenges?

As a nurse, I prioritize treating everyone equally and giving my best effort each day to assist them in overcoming their current challenges. I draw inspiration from their stories to remind myself of the importance of taking care of my own health, recognizing that it isn’t guaranteed. Many of the patients I care for struggle with tasks as simple as walking around the block, so I try to remember the privilege of being able to move around and care for myself while I still can.

Advocacy has become a personal priority, as it not only brings me fulfillment but also honors the struggles of my patients, many of whom are affected by chronic obesity. In my current role in dialysis, I notice that patients with end-stage renal failure have a unique relationship with the healthcare system. Almost all rely on Medicare, and chronic obesity makes their lives significantly more difficult. I strongly believe this population would benefit greatly from TROA. It’s important for me to do my part to make their lives as manageable and burden-free as possible, and I’m grateful for the advocacy opportunities given to me by the OAC to speak not only on my own behalf but also for those I serve.

Are you interested in sharing your story with the OAC Community? Let us spotlight you in a future member feature! Email membership@obesityaction.org and ask how to get started.