ADA, Diabetes 'Battle' Is Not for Patients

Again, we as patients need to question what the American Diabetes Association may do to help provide assistance for the patients. I am aware that the ADA is for the medical community, but even there, this seems little hope in receiving help from the medical community – especially primary care physicians. With Dr. Robert Ratner, chief scientific and medical officer for the ADA who says, “Many people with type 2 diabetes who are on medications don't need to do home glucose monitoring at all," in talking about oral medications.

Until Dr. Ratner changes his message or is no longer an officer of the ADA, people with type 2 diabetes need to boycott any activities by the ADA. I realize many people support the ADA unconditionally and my message falls on deaf ears.

The interview that Kevin L. Hagan did with Medscape in October 2015 is another indication of how far out of touch the organization is with people with type 2 diabetes. The first question sets the tone.

“Medscape: This is a big anniversary year for the ADA. Where do you see it headed in the near future?

Mr. Hagan: The roots of the ADA are as a professional medical association; we were founded by 28 physicians 75 years ago. Over the course of the past 75 years, our mission has evolved, and today we serve both healthcare professionals and consumers.”

If we are consumers, then the ADA has nothing of value for us and we would not shop there. We are patients and we certainly don't receive much of value from the ADA. Most of the ADA's efforts are aimed at people with type 1 diabetes. I have no objection to this, as especially children with type 1 diabetes need this support.

Mr. Hagan: “The cost of diagnosed diabetes is more than $245 billion annually, and it is an escalating price. For me, the front lines of that war on diabetes is at the level of the primary care physician (PCP). As an association, we need to give greater attention to that group.”

These are my thoughts and not Mr. Hagan's. This is the purpose of the ADA and we cannot expect better as patients with type 2 diabetes. Some doctors do treat patients with respect, but too many doctors are guilty of some or all of the following:

• Accuse the patient of causing their diabetes.
• Threaten patients with insulin to keep them on oral medications, when they should be on insulin.
• Refuse to give patients any information on diabetes, lack of education.
• They talk at us rather than with us to arrive at the best treatment for what ails us.
• Doctors say, “More knowledge for patients is not always better…”, “Lay people just don’t understand these issues…”
• Doctors will not individualize treatments for the elderly unless forced into this.
• When we dare ask about insulin for better diabetes management, we are chastised for failing to manage our diabetes with oral medications.
• Some doctors also say that using insulin is our punishment for failing to manage diabetes with oral medications.

Yes, many doctors do not treat patients with diabetes with respect, but bully and bad mouth patients behind their back and to their face. Until doctors learn to respect patients and treat them with respect, the battle will continue. The doctor /patient relationship is in disrepair and communication is sadly absent.

SGLT2 Post Marketing Studies

This is so typical for “experts” and especially those on the receiving end of money from Big Pharma.

Dave Joffe, Editor-in-chief of Diabetes-in-Control makes this statement, “One of the problems that can occur in these postmarking studies is the lack of good controls and patient choices. This means that a lot of great drugs can get a bum rap because of external influences.”

I must wonder what he has in mind in his support of Big Pharma. The above statement is about the SGLT2 drugs. These drugs have not been on the market long enough to know what all the side effects are and whether the benefits outweigh the risks.

Apparently a few legal firms believe otherwise as they are trying to get patients involved in class action lawsuits especially against Invokana. Jardiance has been advertising heavily on TV, as has been Farxiga.

AACE and ACE are calling upon pharmaceutical companies to continue to investigate the mechanisms behind the metabolic effect of SGLT2i (sodium-glucose cotransporter-2 inhibitors). They also make note that the diagnosis of DKA is often missed or delayed due to atypical presentation involving lower-than-anticipated glucose levels or other misleading laboratory values.

In addition, AACE and ACE encourages all associated stakeholders including medical societies, insurance companies, the pharmaceutical industry, hospitals, patient associations, and other interested parties to initiate educational activities to teach physicians and other related healthcare professionals who manage diabetes, on the proper ways to identify and treat DKA.

For people with type 2 diabetes there is one way to avoid DKA (diabetic ketoacidosis), and that is to not take any of the SGLT2i medications. This may seem harsh, but I would rather be safe than rely on “experts” on the payroll of Big Pharma and those receiving money from Big Pharma.

An international panel convened by AACE and ACE concludes that the risk-benefit ratio overwhelmingly favors continued use of SGLT2i. I cannot accept this and do wish that they could have been a little more cautious. I could not take any of the SGLT2i because of the conflicts I would have with my kidneys.

The one missing point in the panel discussion that is missing is the listing of conflicts of interest and what the panel members receive in compensation from the manufacturers of the three drugs.

Cardiologists Creating a Bad Rap for Themselves

I won't go as far as the headline on this article, but it still raises some issues that are valid. We as patients need to be concerned about the behavior of cardiologists and their proclivity to prescribe statins. We also need to be cautious with other doctors that push statins.

When this article appeared, Allen called me and asked if I had received it. When I answered yes, he was happy that I had and related to me something he had not disclosed to the rest of us. He said that a cousin of his had gone to a doctor because of a heart arrhythmia and was taken into an operation to put a pace maker in him. Normally everything should have gone normally, but during the operation, his cousin had passed and they were unable to revive him.

The doctors wanted his wife to immediately transfer him to the crematorium as he had requested if something went wrong. Allen said the wife had refused as she wanted a complete autopsy and had the funeral home take possession of the body. A few days later when the autopsy was complete, Allen learned that the arrhythmia was a minor problem, and that he was severely deficient in magnesium and potassium.

After reading the article, I could understand Allen's anger. It is widely understood that too little magnesium, potassium, or iron can cause arrhythmia, but apparently, many cardiologists seldom test for this.

I asked Allen if his cousin was on a statin and Allen said yes. He added that his cousin's wife was now sorry she had encouraged him to stay on the statin. Allen said his cousin's wife had sent him a copy of the autopsy, but he did not understand all of it, but he had thanked her for the autopsy and having it done, as it showed that the cardiologist had probably made a huge mistake.

His wife said that she had contacted an attorney, but still was not sure what could be accomplished.

Allen said he could not see from the autopsy anything about CoQ10 like the article stated about statins depleting the body's CoQ10. Allen said he was happy that he had stopped the statin a couple of years earlier because he now does not trust his doctor to even consider this. Allen said he almost laughed at the statement in the article - “Statin use has become what appears to us to be a kind of religion, an unchallengeable article of faith among some doctors.”

The article is very uncomplimentary to cardiologists. It says heart operations are big business. They produce about $100 billion in revenue per year. Hospitals and doctors depend on this revenue. It may be clouding their judgment.

Diabetes Not Receiving the Attention It Deserves

During the month of June, more than 16,000 news articles mentioned cancer, while over 7,000 mentioned HIV/AIDS. Yet, diabetes was only mentioned in about 5,000. The discussion is strikingly disproportionate to the number of affected patients and potentially affected patients. The other problem about many of the articles is they do not make the distinction about the difference between the types and make education a priority.

Even Congress has been strangely silent about diabetes. I have been corresponding with my two senators and the representative, but none have expressed any anticipation of diabetes being on the agenda for 2015. I am very surprised at their willingness to discuss issues in an open manner.

It appears that Senator Reid (D - Utah) is forcing many issues and preventing others from even being discussed. The House of Representatives now has a change in leadership and it is presently unknown what will be the priorities.

I agree that diabetes is a topic receiving little conversation or even coverage in the news media. Having type 2 diabetes, I can understand that many others with type 2 do not want to talk about it in public and often with others with type 2 diabetes. There are two issues, stigma and severity, that help create the secrecy many type 2 people desire to maintain.

Stigma often stems from the belief that people bring type 2 diabetes onto themselves, a self-inflicted disease resulting from poor dietary choices and not enough activity. Meanwhile, there is a perception that type 2 diabetes is quite manageable for patients, simply a “touch of sugar” that requires taking a few pills each day, eating more vegetables, and exercising.

It is easy to say that for misunderstandings, we must start with education. As with other diseases, such as mental illness, a lack of information causes misunderstanding and judgment. Type 1 and type 2 diabetes are often grouped under the same umbrella, and misconceptions are common, such as the idea that type 1 and type 2 diabetes only result from unhealthy eating habits. Type 1 diabetes is an autoimmune disease, where the body attacks and kills the cells that make insulin. Type 2 diabetes is more complex: genetics, ethnicity, weight, age, environment, and lifestyle factors all play important roles in risk.

Even when patients seek treatment and confront their diagnosis, they are faced with a culture of shame and blame, and the misinformed response of, “It’s your fault.” It is also true that many doctors use this response on type 2 patients.

In addition to the stigma, the burden that this disease places on individuals in terms of health and cost is often forgotten. There are the countless severe complications, including stroke, blindness, kidney disease and heart disease that make diabetes a contributing factor in many other cases of death. The difference in expense is equally dramatic. Diabetes costs totaled $176 billion in 2012 and over 200 billion in 2014.

Another Type 2 Website

I have no idea how long this website has been up. If it were not for another blogger, I probably would not have found it. I will watch the site, but no longer try to participate. I tried posting to the forum, but the second post was deleted, apparently because they will not allow suggestions about low carbohydrate, high fat food plans that avoid whole grains.

The Editorial Team is made up of several writers who are all employees of Health Union, the parent company of Type2Diabetes.com. Often times they collaborate on articles for the site that may cover a broad range of topics from news articles, reports from their In America surveys, or a summary of feedback that we’ve gathered from community members. They are very diverse in backgrounds and expertise, so sometimes they may write as individuals or as a team.

I could not find anything in the multiple pages of rules they have, but I can still take a hint when something is deleted. With registered dietitians very active on the site, I can understand why anything about low carb/high fat is going to be deleted and especially anything mentioning avoidance of whole grains.

I have also discovered some very conflicting information and some outright errors that show how RDs/CDEs think. I know that people with type 1 diabetes use continuous blood glucose monitors (CGMs) and a few type 2 people use them.

I have not heard of blood glucose monitors that use test strips. I have heard of blood glucose meters that use test strips, and this is what people with diabetes all use, even if they have CGMs.

The next point of contention (slightly over half way down the page under Blood glucose monitoring) is when they say that if you have type 2 diabetes, your healthcare provider will monitor your glycemic control using hemoglobin A1C testing on a regular schedule during office visits. The frequency of monitoring will be determined by how well your blood sugar is being controlled and other factors. Your provider may want to test you more frequently after a change in medication.

The last paragraph shows that they follow the ADA and Dr. Robert Ratner, chief scientific and medical officer for the ADA that says, “Many people with type 2 diabetes who are on medications don't need to do home glucose monitoring at all," in talking about oral medications. This is something that should not happen as this means that patients will be managing their diabetes in the blind and not understand what different foods do to our blood glucose levels.

I have always felt this is how they get diabetes to become progressive and can mandate the number of carbohydrates plus whole grains and without testing, we could never be sure of what they do to our blood glucose levels.

Therefore, on a scale of 1 to 5, with 5 being top rated, I could only give this site a 1- as the site has some poor information.

A Diabetes Website Still Getting Its Feet Wet

This website information came to me in an email from Craig Idlebrook. He is the Editor for both Type 2 Nation and Insulin Nation (I will leave this for you to explore on your own). The founder of the two sites, Chris Leach, passed away in 2013. The group in charge of the two sites (eps) currently does not have any other sites or publications. Insulin Nation started in 2012 and Type 2 Nation started in 2013.

Other people involved in the Type 2 Nation can be found here (scroll down for the entire list of the Team).  Several are well recognized in the diabetes community and the diabetes online community (DOC). This and other information about the website can be found in the pull down tabs near the top of the page.

The Home Tab features two of the other tabs – First Person and Recipes. Going to those tabs will get you more stories and recipes. I currently have problems with the sound system, so I am unable to explore Speech Enabled box in the near top right column below the search box.

The Treatment tab covers some of the problems of diabetes and while the blogs are short, they are very informative. Currently the Technology tab has two articles and needs more. The Weight Loss tab is articles about weight and covers a wide variety of weight loss topics.

On a scale of 1 to 5, with 5 being top rated, I could only give this site a 4+ as this site has only a couple of weaknesses and overall is strong.

Our November Meeting Did Not Happen

We tried for November 14, but too many of our members were ill and all but one had their flu shot. I was the one without my flu shot, and I was only sick for two days. A mild case if I do say so. One other had it for two days, and the rest were sick for five or six days. As everyone was getting better, several more of the members became ill. There went our meeting for November 21 as Beverly's husband Tom was also down with the flu and she had the program.

Therefore, we are leaving the November meeting for December 5 or 12, depending on the weather.

It turns out that three of the members ended up in the hospital and all three had their flu shot. Tim sent out an email to all of us and commented that this was the first year that we have had any members sick from the flu in four years. He wished the three still in the hospital a happy Thanksgiving even if they might not feel like celebrating.