Our patients, hailing from various states, reunite in Chicago to share their testimonials and experiences with islet transplantation.

 

Over the past two decades, clinical trials worldwide have proven the safety and efficacy of islet transplantation for Type 1 diabetes. While recognized as a standard of care in countries like Canada, Australia, Japan, the UK, and several European nations, it is yet to be fully embraced in the US.

The primary hurdle lies in the inadequate regulation of islets within the US. The FDA categorizes islets as drugs, unlike other countries where they are treated as any other organ or tissue for transplantation.

 

Current regulatory restrictions hinder islet isolation beyond clinical trials, and even if drug regulations are implemented, they do not guarantee the quality, safety, and efficacy of islets post-transplantation.

Despite efforts from leaders in transplantation and diabetes, such as the Islet for US Collaborative, urgent regulatory updates remain elusive. More details can be found at www.isletsforus.org.

 

Presently, islet transplantation in the US is limited to clinical trial settings funded by research. The high cost and limited funding have restricted enrollment to only a few centers. Without regulatory amendments to facilitate insurance reimbursement, increased patient access, and reduced research costs, the progress in this field remains challenging.

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Our patients share our disappointment with the current regulatory challenges, and they fervently wish that every American grappling with diabetes could have access to the transformative opportunity of islet transplantation, just as they did. Their collective goal is to provide testimony and instill hope in those who have exhausted available means of glucose control, regaining control of their lives.

 

These testimonials are not only for patients but also for physicians who may not be fully aware of the positive impact of islet transplantation on their patients' lives and may not advocate for it.

 

Several patients have achieved full long-term insulin independence, while others experience partial islet function, reducing severe hypoglycemic episodes but requiring some insulin supplementation. Despite some patients losing islet graft function over time, leading to a return to insulin pumps due to funding limitations, those who initially experienced the benefits of insulin independence later pursued pancreas transplantation with enthusiasm and are once again enjoying life without insulin dependence.

 

Importantly, none of our patients regret undergoing the islet transplantation process. While complications varied, none were as life-threatening or compromising as the hypoglycemia unawareness with severe and unpredictable lows that they previously endured. Our patients now rediscover the joy of life, feeling in control and actively participating in social, emotional, and professional aspects. It's the ultimate satisfaction and reward for them.

 

Here are the inspiring stories of individuals with long-standing type 1 diabetes and problematic hypoglycemia who underwent islet allotransplantation. Each story begins with years of debilitating symptoms, leading to a shared narrative of transformation:

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...After years of diligently managing my blood sugar with insulin, a disheartening shift occurred. Gradually, I lost the ability to feel when my blood sugar dropped, stopped feeling agitated, shaky, and hungry. I used to recognize those signs and grab a snack. Not anymore. Now, it plummets without warning. I'm completely unaware as my speech slurs, and confusion sets in. At times, I find myself in unfamiliar places or wake up surrounded by concerned family, strangers, or paramedics administering glucagon.

The terrifying part is the lack of control and predictability. Episodes may occur at night, leaving me fearing I may never wake up. My family lives in constant worry, checking on me multiple times a day, panicked if I don't answer the phone. My attempts to adjust my pump settings offer little relief; lows persist.

To cope, I keep my glucose high when driving or facing stressful workdays – a daily compromise. Yet, my A1c is now 8-9, and I dread the potential health complications. Trapped and depressed, even Prozac provides no solace. I live in constant fear, feeling utterly miserable. Please, I need help!

 

 

 

....and below, you will find the rest of each patient personal story .... after their islet transplants!  

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