Many people have asked us why we do not use the “cure” word, or even “Practical Cure for Type 1 Diabetes” with our two boys. We have always been reluctant to use the C-word because it can mean different things to each individual. In fact, it means different things to healthcare professionals and organizations too! However, there do seem to be some fundamental core values that most people hold when it comes to defining a practical cure for diabetes.
It is quite surprising that the primary diabetes charities and research organizations do not have an easily-found, published definition of a “cure” for diabetes. I found a couple of good articles that I will use as assistance in defining a practical cure for diabetes.
A new organization, called the Juvenile Diabetes Cure Alliance (JDCA) did some excellent investigation of the major Type 1 charities to discover their definition of a cure for type 1 diabetes. JDCA’s diligence indicates that none of the major Type 1 diabetes charities have adopted a formal definition of a cure.
Here is what JDCA says:
Through diligence of the Type 1 landscape, the JDCA has found that none of the organizations within our coverage universe have adopted a formal definition of a cure. The JDCA’s ongoing attentiveness to the Type 1 landscape includes reading all available years of annual reports and other literature, including donor materials, viewing the website, and contacting management of the major funders of Type 1 research. Please see our findings in Exhibit A.
Some charities have developed a vision of a cure, but a vision is too vague to be meaningful when setting research strategies. (1)
Remission or Cure?
A consensus group comprised of experts in pediatric and adult endocrinology, diabetes education, transplantation, metabolism, bariatric/metabolic surgery, and (for another perspective) hematology-oncology met in June 2009 to discuss the issues surrounding how to define the cure of diabetes. They came up with a consensus document that was published by the American Diabetes Association (ADA) in 2009. (2)
While the consensus group’s work was published on the ADA’s DiabetesCare website, they note, “the opinions and recommendations expressed herein are those of the authors and not the official position of the American Diabetes Association.” I include a few excerpts to help lay the foundation for their diabetes cure definition, but I encourage you to read the entire article.
Defining remission or cure of diabetes is not as straightforward as it may seem. The distinction between successful treatment and cure is blurred in the case of diabetes.
Medically, cure may be defined as restoration to good health, while remission is defined as abatement or disappearance of the signs and symptoms of a disease (3). Implicit in the latter is the possibility of recurrence of the disease.
For a chronic illness such as diabetes, it may be more accurate to use the term remission than cure. Current or potential future therapies for type 1 or type 2 diabetes will likely always leave patients at risk for relapse, given underlying pathophysiologic abnormalities and/or genetic predisposition.
The authors agreed upon the following definitions, which are the same for type 1 and type 2 diabetes:
- Remission is defined as achieving glycemia below the diabetic range in the absence of active pharmacologic (anti-hyperglycemic medications, immunosuppressive medications) or surgical (ongoing procedures such as repeated replacements of endoluminal devices) therapy. A remission can be characterized as partial or complete.
- Partial remission is sub-diabetic hyperglycemia (A1C not diagnostic of diabetes [<6.5%], fasting glucose 100–125 mg/dl [5.6–6.9 mmol/l]) of at least 1 year’s duration in the absence of active pharmacologic therapy or ongoing procedures.
- Complete remission is a return to “normal” measures of glucose metabolism (A1C in the normal range, fasting glucose <100 mg/dl [5.6 mmol/l]) of at least 1 year’s duration in the absence of active pharmacologic therapy or ongoing procedures.
- Prolonged remission is complete remission that lasts for more than 5 years and might operationally be considered a cure.
For type 1 diabetes, remission could potentially be attained after immune modulating or islet-replacement therapies that do not require ongoing immunosuppression but not with transplants that require ongoing immunosuppression or future therapies such as an implanted artificial pancreas.
These definitions and consensus recommendations, summarized in Table 1, are based on what the consensus group felt to be reasonable given the therapies of today.
Table 1 (Excerpt)
We meet the consensus group’s definition for complete remission, and the criteria for prolonged remission.
A Practical Cure?
The JDCA advocates the concept of a practical cure versus an “idealized #Type1DiabetesCure.” Distinguishing between a practical cure and an “idealized cure” is important. A practical cure does not return the patient to a state as if they did not have diabetes. It seeks to deliver a result that most people and families would consider an acceptable, cure-like lifestyle. Although an “idealized cure” where the disease would be eradicated represents the ultimate goal, this development is extremely unlikely in a time frame that is relevant to current Type 1 diabetes patients and donors, in our view.
Utilizing input from Type 1 diabetics and parents of children with Type 1, the JDCA is guided by the following definition of a practical cure:
- For at least 1 year, a cure must:
- Not require blood glucose monitoring beyond once a week
- Not require carb counting
- Not restrict a patient’s diet
- Allow patients to sleep care free
- Maintain A1c levels between 6-7
- A cure must be delivered through a treatment that:
- If it is surgical, requires a full recovery time of less than 72 hours.
- If it is pharmacological, requires no more than a reasonable pill and/or injection regimen
A cure, which may include a drug regimen, must not have side effects, or pose longer term risks, greater than current complications of Type 1.
This seems like reasonable definition of a practical cure to us.
Based on the definition criteria above for a practical cure for type 1 diabetes, we would not yet consider our two boys “cured,” but only because of one of their criteria
- we do not monitor glucose beyond once a week,
- we do not count carbs,
- we, and the boys, sleep care free at night and,
- the boys’ A1c levels are always below 5.5, with the last one being 4.7 for both of them.
(individual results may vary)
We meet all of the criteria except not restricting the diet. But stop and think about that one. We have toyed with the idea of doing a standard glucose tolerance test with the boys just to see what their results would be. But then we ask ourselves what would the purpose be? We have no intention to going back to the typical Western diet. Type 1 diabetes or not, it is detrimental to our long term health. Would it result in us relaxing some of the standards of implementing the Health-e-Solutions lifestyle? We already do that with the more natural and healthful transition diet.
We just don’t see the point of resuming a lifestyle and diet that may have contributed to the development of diabetes (both type 1 and type 2) in the first place. All types of diabetes are on an accelerating growth curve, more than population increase can account for. It seems logical to us that environmental and nutritional factors could play a significant role in that growth. And since our two boys have proven to be genetically pre-disposed to develop type 1 diabetes, why would we subject them once again to possible contributing environmental factors? The Health-e-Solutions lifestyle seeks to mitigate the environmental and nutritional factors as much as is practical and possible for each individual.
While our boys have had phenomenal success with the Health-e-Solutions lifestyle, we won’t call them cured by either of the definitions discussed above. However, it HAS delivered a result that we consider an acceptable, natural, cure-like lifestyle