Additional Information on USPSTF Pronouncement

On October 21, I received an email from the ADA promoting the US Preventive Services Task Force (USPSTF) pronouncement. While I can agree with much of what they are advocating, I am totally turned off when they label USPSTF as alphabet soup because the acronym is six letters long. To me this means that the ADA is belittling the USPSTF and does not show respect.

Then they use scare tactics by listing the serious complications that diabetes may cause supposedly to show how serious diabetes can be. If the ADA was actually calling for action and supporting the pronouncement of the USPSTF, you would think they could choose a more positive introduction. Diabetes receives enough bad publicity without the ADA adding to this.

Why they use the term Diabetes Advocates to apply to themselves is a puzzle. The email author then says, “This month our years of hard work paid off and the USPSTF recommended – for the first time – that Americans with key risk factors should be tested for diabetes. Studies show that currently more than half of people with undiagnosed diabetes are not tested because they do not meet the current diabetes screening guidelines. Now this will change!”

The author also says this matters because doctors around the country follow USPSTF recommendations. Then the email author says this is vital testing will be completely paid for by a patient's health insurance. Now this is where the two doctors I have been corresponding with have expressed caution. They both agreed that most private insurance companies may pay for the screenings, but will they pay for the follow-up appointments if the tests are positive. Medicare is the other concern as they have been in the habit of not paying.

The doctors do have a large concern about those that fall into the prediabetes range. Without the ADA making this an official classification, they feel this will still be an area that will not be covered, even with a prediabetes diagnosis.

The author of the ADA newsletter declared that the change is critical citing the estimated annual economic cost of undiagnosed diabetes is a staggering $18 billion. With this change, the 10 million Americans with undiagnosed diabetes and the 86 million with prediabetes will have a fighting chance to take action before the devastating complications of diabetes take hold, saving both lives and dollars.

The one thing that makes me hopeful – will the ADA do something about renaming prediabetes and make it an official diabetes designation? One can only hope.

Preparing to Present to An Outside Group

We are nearly finished for our November presentation to the group south of us. Their doctor has seen the outline and asked us to add the topic of prescription errors and maybe leave off the sleep apnea topic, as he would have a speaker for that. He was happy that Allen would be talking about the VA and those benefits, as several of his patients were veterans. He has asked us to arrive at 6:00 PM, as he wants to lengthen the meeting because of the topics we will be presenting.

A.J will be presenting about interventions, Allen will be presenting about the VA, Barry will be presenting about self-monitoring of blood glucose, Sue will be presenting about getting off medications, and I will cover the topic of prescription errors. My cousin will answer the questions she could not answer at the last meeting. Tim will operate the slide projector for all the presentations and Dr. Tom will answer a few questions that we may need help answering.

Dr. Tom has reviewed all of our topics and made a few suggestions to help us in our presentations. Dr. Tom asked Max to finish his topic on sleep apnea just in case and to come with the rest of us. Tim and Dr. Tom will be driving. My cousin will be driving alone. We will be attempting to keep our presentations under 15 minutes and allow 15 minutes for questions.

Today Tim received an email and forwarded it to the rest of us. The group will have about 35 members present and they are looking forward to our presentations. Dr. Tom has asked us to have some of the group we will be making a presentation to for our October meeting. We said no, because we wanted to welcome our new members and work with them during a meeting before exposing them to a meeting with other groups. We feel that it is important for them to get to know us and be able to ask questions in front of a smaller group.

Dr. Tom also informed us that Dr. Jay would not be discouraging our two groups, but he would not be promoting us. He said that he appreciated our honesty and that we did not dodge his questions. Dr. Tom did say that he was disappointed that we did say that we would not be favorable to doctors leading our groups. He continued that he told Dr. Jay that we encourage people to be testing their blood glucose levels more often than the ADA or the AACE. He told Dr. Jay that we encourage patients with diabetes to be tested for vitamin B12 and vitamin D, particularly those that had been on Metformin for several years.

He did ask if we had people with prediabetes in our groups. Dr. Tom said that each group only had at most one person with prediabetes. Dr. Tom did warn him that if he was not encouraging people to test or not giving out prescriptions for testing supplies, we would be opposing him and encouraging his patients to find another doctor. He said Dr. Jay was surprised by that, but said he was encouraging people to test and was requesting extra supplies for patients for at least six months even including the prediabetes patients who could not receive reimbursement. Dr. Tom did say that he was encouraging people to shop around for the testing supplies, but had found that the most reliable and least expensive was the Relion meter and test strips. He also suggests the Relion Prime and that people check Amazon for prices.

Join the Unprecedented Patient Dialogue with the FDA

I am quoting from the notice I received from diaTribe on 10-23-14 and remind everyone to participate, as I feel it is important.

We invite diaTribe readers to join an unprecedented patient dialogue with the FDA on November 3 from 1-4pm EST - you can register for the online webcast at www.cvent.com/d/z4qgt1/1Q. Even if you are only available for part of the conversation, we would strongly encourage you to sign up and join the virtual discussion based on our recent collective feedback.

As a community, it is essential that we show the FDA how committed we are to more open communication. Please register and join as a signal to the Agency that you are interested in dialogue, have valuable input to share, and want to advocate for better treatment options for diabetes.

Thanks so much from all of us at diaTribe!

Yes, this is one of the active groups promoting the survey and asking for your participation.  The last two days  have been very active.

I Can't Believe a Diabetes Forum Banned This

Some background on this first. In one of my newsletters from the ADA, I received information about a meeting of the Diabetes Organizations and some patient groups with the FDA. There was a survey link included to take a survey probably designed by the ADA or FDA, but there was at least one area for open comments which I made full use of in laying out many things we as diabetes patients need.

This blog references a great blog by Scott Strumello, which alone is worth the read, and then gives the link for the survey. This survey should be considered important and be completed.

I realize that diabetes forums need rules. I did post a thread about the information and encouraging people to take the survey. Here is what I was told - “We cannot permit surveys of any kind, in part (the part that most applies to this particular survey) because there is no way we can verify their authenticity. Surveys can be, and have been, used for marketing research, student homework, or phishing.”

Okay, the forum has a blanket rule forbidding any post about surveys even one this important. For forum members, this forbidding of this one does little to help the members learn about dealing with the FDA.

I hope many of my readers that are residents in the USA will complete the survey.

Another Questionable One-Size-Fits-All Pronouncement

Fortunately, there is still time to comment about this – until November 3, but this draft proposal is typical of their actions and they seldom back down or change little from the draft. Granted, they need to start someplace, but they need some flexibility in their pronouncements.

The draft statement by the US Preventive Services Task Force (USPSTF) says that the new focus is on identifying people with impaired fasting glucose (IFG) and impaired glucose tolerance (IGT). This is according to task force member Michael P. Pignone, MD, professor, department of medicine, and chief, division of general internal medicine, at the University of North Carolina, Chapel Hill, NC.

Since the USPSTF is a prevention and screening task force, I had to ask the doctors how they reacted to the Medscape article. They did agree that there needs to be some variables spelled out, but they could live with it.

The recommendation calls for screening everyone beginning at age 45 years, as well as younger adults with risk factors including overweight or obesity, a first-degree relative with diabetes, women with a history of gestational diabetes or polycystic ovarian syndrome, and certain racial/ethnic minority groups. This includes African Americans, American Indians/Alaskan Natives, Asian Americans, Hispanics/Latinos, and Native Hawaiians/Pacific Islanders.

The task force spokesman says that the proposed recommendations are generally in line with diabetes screening recommendations previously made by other groups, including the American Diabetes Association (ADA), the American Association of Clinical Endocrinologists, the American Academy of Family Physicians, Diabetes Australia, Diabetes UK, and the Canadian Task Force on Preventive Health Care.

Both doctors felt good about some of it, but emphasized that they gave family history more importance than obesity, and felt that testing should be done earlier for women that had gestational diabetes. Both doctors agreed with this statement - Part of the task force's intent is to get physicians to think about lifestyle intervention more, and it's also a call to make effective lifestyle programs more available. They said this was important to make all doctors more aware and focus on this more.

I asked if they felt Medicare would allow this and reimburse doctors for the time. Both felt this would be the barrier and prevent this from becoming a reality. They also agreed that a major issue is how to follow up with those who screen positively. The felt that the cost of screening itself is quite inexpensive, but we have to think of the full spectrum of care that's required. Apart from cost, it's going to be hard to deliver good lifestyle-intervention programs to the large number of US adults who might benefit from them.

I appreciate my conversation via email about their perspectives and respect their putting me in a better mood

CMS Stranglehold on Medical Testing and Diagnostics

The Centers for Medicare and Medicaid Services (CMS) is up to its dirty tricks continually. CMS may become the laughing stock of the medical care world if they continue to restrict what health care providers can do. The rules are becoming so restrictive that even the CMS employees cannot keep up with the changes. With this, is it any surprise, that Medicare is projected to be insolvent by 2026, only twelve years from now?

More from the bad news side: Medicare will not pay for more than one test a year that is not directly related to the illness currently being treated by the doctor. In addition, Medicare rules forbid your doctor to treat (and therefore to test for) more than one ailment per office visit. What is the patient to do? Many people using Medicare have more that one medical problem and often three or more.

In theory, the patient could pay for the additional testing, but if those tests are deemed “medically unnecessary,” your doctor could go to jail for writing that prescription if he or she bills Medicare for the test. And if she or he wants to discuss the results of the test and prescribe a course of treatment, all discussion and treatment must be about that original ailment, even if you’re now sick with bronchitis instead. I am only guessing, but this sounds like if you have more than one illness, then you will need to see a different doctor for each disease or illness. How ridiculous CMS is becoming!

If a product or diagnostic test is new, getting Medicare to create a new billing code for it can take a long time and cost doctors a significant amount of money in lost reimbursements. And if a billing code exists, Medicare must agree to pay for the service. Medicare has not been willing to pay for genetic testing, except in screening for compatibility for kidney and bone marrow transplants. And with genetic testing to help individualize and personalized medicine, Medicare is unwilling to cover the level of genetic testing need for this to become a reality.

Medicare won't pay for physicians to consult with patients by email or over the phone, even if the patient is old, disabled, or too ill to come to the doctor's office. Medicare will not pay for doctors to teach diabetics how to monitor their glucose levels or manage their diabetes in other ways. The same goes for other chronic illnesses.

Read about Medicare and their restrictions and follow the many links in this article.

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.

Is Internet DSME Beneficial?

People with type 2 diabetes can benefit from diabetes self-management education (DSME) and it does not need to be taught by certified diabetes educators. If done correctly and people with type 2 diabetes will learn, the internet can be a great place to learn and sharpen diabetes management skills.

Self-management of diabetes, includes medication, nutrition (food plan), and lifestyle strategies. This is essential for optimal glycemic control and minimizing complications of the diabetes. Education to teach and improve self-management skills is critical for success and, when delivered via the Internet, can lead to better glycemic control and enhanced diabetes knowledge compared to usual care.

“Katherine Pereira, DNP, Beth Phillips, MSN, Constance Johnson, PhD, and Allison Vorderstrasse DNSc, Duke University School of Nursing (Durham, NC), review various methods of delivering diabetes education via the Internet and compare their effectiveness in improving diabetes-related outcomes. In the article "Internet Delivered Diabetes Self-Management Education: A Review," the authors describe some of the benefits of this method of educating patients, including ease of access and the ability to self-pace through the materials.”

DSME delivered via the Internet is effective at improving measures of glycemic control and diabetes knowledge compared with usual care. In addition, results demonstrate that improved eating habits and increased attendance at clinic appointments occur after the online DSME. The researchers discovered that engagement and usage of Internet materials waned over time. Interventions that included an element of interaction with healthcare providers were seen as attractive to participants.

Internet-delivered diabetes education has the added benefit of easier access for many individuals, and patients can self-pace themselves through materials. More research on the cost-benefits of Internet diabetes education and best methods to maintain patient engagement are needed, along with more studies assessing the long-term impact of Internet-delivered DSME.

I commend the individuals involved for realizing that the Internet could help with diabetes self-management education. The increasing numbers of people with diabetes is resulting in limited availability and access to diabetes care services. This includes access to certified diabetes educators. It is estimated that there is about one certified diabetes educator per 1,400 patients with diabetes in the United States. Because of the many factors limiting access to diabetes education, innovative delivery methods for DSME will need to be developed. One potential avenue that has been studied over the last decade for addressing the reach and accessibility of DSME is the use of Internet-based interventions.

DSME as a vital component of the care of patients with diabetes and the ADA recommends that DSME be provided for every patient at the time of diagnosis of diabetes and as needed thereafter. Despite these recommendations and the proven effectiveness of DSME, many patients with diabetes never receive DSME or any form of diabetes education.

If the future plans of the American Association of Diabetes Educators come to fruition, then there may be some hope. With the Academy of Certified Diabetes Educators staying with the exclusive idea that they are the only ones capable of providing diabetes education, we cannot expect any help from them.

The full copy of the report is available to read here until November 6 and then it goes behind a pay wall.

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.