Diabetes, The Poorly Managed and Invisible Disease

Diabetes is one peculiar disease. There are few illnesses and fewer diseases where the patient is totally responsible for his/her own care. Yes, the doctor is there for guidance and is the one issuing the prescriptions, but even the doctor is limited in caring for you. Most doctors are not reimbursed for education, extra advice, and will not be reimbursed for anything extra. Very few doctors will go beyond the tests and finding out the medications you are taking to decide what medications you can take.

Too many doctors do not even do the tests necessary to be sure they have the correct diagnosis. Then to make matters worse, most doctors do not have certified diabetes educators available for diabetes education. A few that do have found them useless because of the mandates they use and lack of true diabetes education. Many doctors have found that even having registered dietitians available is hard to come by and more have found them promoting too many carbohydrates and whole grains so heavy that the patients have a difficult time lowering their HbA1cs.

This is one reason many of the local doctors prefer working with diabetes support groups and promoting support groups. They can spend time with us away from the office and promote education one time a month and then follow up the next month. This has surprised some of us and since the group I take part in has no doctor as a leader, they are surprised that we will not let a doctor become our leader. Yet they let us help educate their groups and take part in meetings when we bring several groups together for a meeting.

What many patients desire is more access to the doctor. However, what they often do not understand is that the insurance companies, Medicare, and Medicaid limit the time that they will reimburse doctors for in a year. So if the patient could get unfettered access to the doctor, they would soon not be able to see the doctor for much of the year, because they have used up the limit for the year.

Many people with type 2 diabetes have a difficult time in realizing that the doctor cannot be with them 24/7 and refuse to learn how they can manage their diabetes. Back a few years ago, there could have been good reasons for not learning, but with the internet of today, learning how should be the goal of every person with type 2 diabetes. I will be the first to admit that there a many charlatans on the internet trying to convince people that they have a cure for you. Of course all they want is your money for something that will not cure diabetes.

Even though they claim to have been cured, they have not had diabetes in the first place and make their claims knowing they are lying to take money from you. This is a common scam.

There are some social media and other sites that help people with all types of diabetes. Some are reputable and very reliable, some are good and generally give out good information, and some are unreliable. A few follow the ADA guidelines to the extreme and are not good for the majority of people with type 2 diabetes.

There are some very good sites that basically tell it like it is for people with diabetes and by gleaning the information carefully, many can learn how to manage their diabetes.

The Diabetes Support Groups and Conflicts

When a new doctor was changing the landscape and diagnosing more type 2 patients and many patients with prediabetes, he was promoting membership in the different support groups, he then realized that two of the support groups did not have doctors leading them. He started telling his patients to avoid the two support groups without a doctor as a leader.

Both support groups have since talked to Dr. Tom and the doctor has been set straight. He has learned that Dr. Tom works with both support groups in an advisory capacity, but that our support group seems to do well on its own and does more research and has better programs than any other support group.

Dr. Tom called both Tim and Greg and asked them to bring in one other member to meet with him and the other doctor. This happened on October 16 and Tim did ask me. When we were all present, Dr. Tom asked the new doctor why he would not support the two groups without doctors leading them. Dr. Jay as we nicknamed him, said because they may not follow the American Diabetes Association guidelines. I could tell the other members were rolling their eyes. I said because we would rather follow guidelines set by the American Association of Clinical Endocrinologists if we followed any guidelines, and the ADA guidelines were too high and in the area that encourages the complications to flourish.

Greg said an A1c of 7% was too high and even the A1c of 6.5% was even higher than most of the group members wanted to tolerate. Greg continued that most of the members in the support group he was part of tried to keep their A1cs under 6% or near that level. Tim added that was very much like the group he led and while we read the guidelines, it was only to know what was being said and not to follow the ADA. Tim stated that it is true we do not follow the ADA guidelines and will not until they put the patients first and not their own wallets.

Tim continued that we ask Dr. Tom questions and when we have meetings with several groups, we include other doctors. Greg said we don't have meetings with other groups, but do participate in meetings with other groups led by Tim's group. We do consult with other doctors about some topics and have had doctors speak to our group.

Dr. Tom then asked Dr. Jay if he was going to continue opposing the two support groups. Dr. Jay said that he still had questions and both Tim and Greg told him to ask them. Dr. Jay asked how many were in each group. Greg said they now had 13 members and felt that they would be adding more. Tim said we have 17 members and will know if we will be adding six more members on the last Saturday of this month.

Next, Dr. Jay asked why we did not have a doctor as a leader. Greg bit his tongue and politely said that they started out without one and liked the fact that we did not have to worry about what we say. Plus if we came up with research that said something like statins that cause diabetes, we could use the sources and not have to worry about something getting back to our doctors.

Dr. Jay asked Tim if he agreed. Tim said yes, we had started out as a group of three and then two groups combined making it six. Tim continued that Bob is a blogger, worked to help all of us become more interested in learning about diabetes, and has helped some of us more than others, but we have grown because of him. Greg added that I was the one that had brought them into Tim's group and they had left over the fact that they wanted to remain an informal group and those that left wanted a more formal group. They have included us in group meetings and we have learned a lot and enjoyed their programs.

Dr. Jay then asked what besides group formality separated the groups. I said most groups are on oral medications while most of our group is type 2 people using insulin. Yes, four of our members are now off all diabetes medications, but the rest of us are on insulin. Dr. Tom spoke then and told Dr. Jay that they were successful because they went about it correctly and have presented this to other diabetes support groups. He admitted that he now has two members of the group he leads that are off all diabetes medications. Three had tried, but because they did it correctly, when the one was having problems, he went back on medications immediately and was not ridiculed for it.

Dr. Jay turned to Tim and asked if we would accept a doctor as a leader. Tim looked at me and then said we would need to put it to a vote, but he felt that the answer would be no. We consider Dr. Tom as an advisor, but not a leader of our group. We like our more informal nature, have received support from several businesses, and have larger meeting rooms available to us for our meetings of groups. Dr. Tom interrupted and said that we were not the largest group in the area, but only two groups were larger, one in a town north of us (about 28 active members with three doctors) and another in a town about half an hour south of us (about 35 active members with one doctor and a nurse practitioner).

Greg was asked the same question and Greg said he could not speak for the group, but he would be discouraging this. Jessie said she would also discourage a doctor leader. She liked their more formal group with Dr. Tom as being available as a consultant.

Dr. Tom concluded the meeting by saying he was welcome to come with him when Tim's group presents to the group of 35 members or attend the meeting of groups next year. With that, we left.

Position Statement on Diabetes in the Elderly

American Diabetes Association (ADA), pay attention, you just might learn something!  Three international groups have taken the first step in the establishment of guidelines for a global initiative to improve diabetes care for the elderly.  They will address age related problems for their care.

The three groups are the International Association of Gerontology and Geriatrics, the European Diabetes Working Party for Older People, and the International Task Force of Experts in Diabetes.  The group realizes that most international clinical diabetes guidelines fail to address problems common in the elderly, such as frailty, functional limitation, mental health changes, and increasing dependency on others for help.  This is a problem that is ignored in the USA.  Yes, the ADA pays lip service to the individual needs, but has not addressed the needs of the elderly.  It is still a “one-size-fits-all” policy.

The authors write, "the effective management of the older patient with diabetes requires an emphasis on safety, diabetes prevention, early treatment for vascular disease, and functional assessment of disability because of limb problems, eye disease, and stroke. Additionally, in older age, prevention and management of other diabetes-related complications and associated conditions, such as cognitive dysfunction, functional dependence, and depression, become a priority."

The authors list in the purpose of the position statement the following:

1. Arrive at a consensus on how we approach the management of key issues of diabetes care for older people.
2. Identify a series of key areas for diabetes-related surveys and/or audits of clinical care within a range of countries. These may take the form of surveys of particular drug usage, mortality and comorbidity rates, models of care, and use of clinical guidelines in clinical decision making.
3. Recommend up to 3 to 4 research areas that could be considered for further investigation using selected research tools, and that could form the basis of one or more collaborative research proposals.

The authors then identified major research areas that need to be explored, including:

1. the use of exercise, nutrition, and glucose-lowering therapies in the effective management of type 2 diabetes in older people;
2. practical community-based interventions to reduce hospitalization;
3. methods to decrease hypoglycemia rates in various clinical settings;
4. health economic evaluations of metabolic treatment;
5. interventions to delay/prevent diabetes-related complications that are important in older age, such as cognitive impairment and functional dependence; and
6. development of technical devices that help to maintain autonomy and safety for older people with diabetes.

Now we will need to wait and see what is issued in the guidelines and if other areas come to the surface during the formation of the guidelines.  If this was the ADA doing this, I could guess that it would be more platitudes and lip service, and the old ways of doing things would not change.