March 18, 2017

Periodontitis May Indicate Type 2 Diabetes

Severe gum disease, which is known as periodontitis, is often an early indicator of type 2 diabetes.

According to the latest data, diabetes affects approximately 422 million people worldwide, and this number is expected to increase.

In the United States, 29 million people live with the disease. Of these, over 8 million people have it but have not been diagnosed, according to the Centers for Disease Control and Prevention (CDC).

The CDC also estimates that 37 percent of American adults over the age of 20 have prediabetes.

New research - published in the journal BMJ Open Diabetes Research & Care - suggests severe gum disease, or periodontitis, might be an early sign of diabetes.

The authors also suggest a simple finger stick diabetes screening procedure could be carried out in the dental office to avoid the adverse effects of leaving diabetes untreated.

Researchers from the University of Amsterdam in The Netherlands assessed a total of 313 participants from a dental clinic at the university.

Of these, 126 patients had mild-to-moderate gum disease, 78 patients had severe periodontitis, and 198 individuals did not have signs of gum disease.

Participants with periodontitis had a higher body mass index (BMI) than the rest, with an average BMI of 27. However, other diabetes risk factors - such as high blood pressure or high cholesterol - were similar across all three groups.

The researchers analyzed higher glycated hemoglobin (HbA1c) values in dry blood spots, and evaluated the differences in mean HbA1c values, as well as the prevalence of diabetes and prediabetes between the two groups.

HbA1c values measure the average level of blood sugar in the last 2-3 months. The dry blood spots were obtained by sampling participants' blood using a finger pin-prick test.

Prediabetes is commonly considered to range between an HbA1C value of 39-47 millimoles per mol (mmol/mol).

The analysis revealed that those with the most severe form of periodontitis also had the highest HbA1c values.

The average HbA1c values for the severe gum disease group were 45 mmol/mol, compared with 43 mmol/mol in those with mild-to-moderate gum disease and 39 mmol/mol among those without gum disease.

Additionally, the researchers found a high percentage of people with suspected diabetes and prediabetes among participants with mild-to-moderate as well as severe gum disease.

In the severe gum disease group, 23 percent of study participants were suspected of diabetes, whereas 14 percent of the mild-to-moderate gum disease participants had suspected diabetes. In the severe gum disease group, 47 percent had prediabetes, and 46 percent of those in the mild-to-moderate group had prediabetes.

By comparison, 37 percent of those with no gum disease had prediabetes, and 10 percent had suspected diabetes.

Additionally, the researchers found previously undiagnosed cases of diabetes across the three groups: 8.5 percent of those with no gum disease and a little under 10 percent of those with mild-to-moderate gum disease had not been previously diagnosed with the disease until the study.

As much as 18 percent of those with severe gum disease had not been diagnosed with diabetes.

The study is observational, so it cannot explain a causal link between gum disease and diabetes. However, the authors suggest that screening patients with severe periodontitis for diabetes as part of dental medical practices might be an effective way of avoiding complications of the disease.

March 17, 2017

Stress and Anxiety Cause Weight Gain

British researchers say, “Days filled with stress and anxiety may be upping your risk of becoming overweight or obese.” The researchers said they found a link between high levels of the stress hormone cortisol and excess weight.

"We don't know which came first, the greater body weight or the higher cortisol," said researcher Andrew Steptoe. He's the British Heart Foundation professor of psychology at University College London.

For the study, Steptoe's team analyzed levels of cortisol in a lock of hair about three-quarters of an inch long, cut as close as possible to the scalp. This hair sample reflected accumulated cortisol levels over the previous two months, the researchers said.

Cortisol is the body's primary stress hormone, triggered when you have a "flight-or-fight" response to danger. It benefits you to escape danger, but if cortisol levels stay chronically high, it is linked to depression, weight gain, anxiety and other problems, according the Mayo Clinic.

The researchers compared cortisol levels in the sample to body weight, waist circumference and body mass index (or BMI, a rough measure of body fat based on height and weight measurements). They also looked at how cortisol levels related to persistent obesity.

Those participants with higher cortisol levels tended to have larger waist circumferences (over 40 inches for men, over 35 inches for women and a risk factor for heart disease and other problems). People with higher cortisol levels also had higher BMIs -- the higher the BMI, the higher the levels of body fat.

Higher cortisol levels were also tied to greater obesity levels that persisted over the four years examined.

The study included more than 2,500 adults in England, aged 54 and older. Although the study found an association between cortisol and obesity, it did not prove a cause-and-effect link.

One U.S. expert also questioned the method used in the study. Currently, "the evidence for using hair samples as a weight or obesity predictor is lacking," said Connie Diekman. She's director of university nutrition at Washington University in St. Louis.

The study researchers noted that using hair cortisol is a relatively new measure that's easily obtainable and may help in researching the topic.

The link between cortisol and obesity was found for both genders. "In this study, we did not see any difference between men and women," Steptoe said.

Nor did the researchers find age differences among those studied. The average age of the volunteers was 68. However, since all the men and women were older, the same results may not be the same in younger adults, Steptoe said.

From the study, the researchers couldn't tell whether higher cortisol levels triggered stress eating, leading to obesity, but nutrition and weight experts know that many who are stressed do overeat.

"Managing stress eating is complicated," Diekman said, "and what works for some does not work for others."

She suggested maintaining a regular meal schedule. That reduces blood sugar drops that can trigger overeating.

"Do not eat right from a bag or box," Diekman said. "Always put food on a plate."

When you eat, avoid doing anything else, Diekman advised. Instead of checking email, watching television or movies or working, focus on the food.

The study was published Feb. 23 in the journal Obesity.

March 16, 2017

Are Natural Diabetes Remedies Safe?

This topic is part of the reason behind the split in the support group, but not the whole reason. Some people believe that natural products are the only treatment for diabetes and will not take anything else or let a doctor say otherwise. Yes, from supplements to guided meditation, diabetes treatment can include traditional medicines, alternative therapies, and natural remedies.

The National Center for Complementary and Alternative Medicine (CAM), part of the National Institutes of Health, defines complementary and alternative medicine as a "group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine." Complementary medicine is used with conventional treatments, whereas alternative medicine is used instead of conventional medicine.

Although some may be effective, others aren't or can even be harmful. If you want to try complementary or alternative medicine, talk to your doctor about the pros and cons and what may be a good idea for you.

Acupuncture is a procedure where a practitioner inserts very thin needles into specific points on your skin. Some scientists say that acupuncture triggers the release of the body's natural painkillers. Acupuncture has been shown to offer relief from chronic pain and is sometimes used by people with neuropathy, the painful nerve damage that can happen with diabetes.

Biofeedback is a technique that helps you become more aware of -- and learn to deal with -- your body's response to pain. This therapy emphasizes relaxation and stress-reduction techniques.

Guided imagery is a relaxation technique that some professionals who use biofeedback also practice. With guided imagery, you'll think of peaceful mental images, such as ocean waves, or perhaps images of controlling or curing your disease. People using this technique say these positive images can ease their condition.

The benefit of taking chromium has been studied and debated for several years. You need the mineral to make glucose tolerance factor, which helps insulin work better. Several studies suggest that chromium supplements may improve diabetes control, but we don't have enough information to recommend it to treat diabetes yet.

Several types of plants are referred to as ginseng, but most studies have used American ginseng. They've shown some sugar-lowering effects in fasting and after-meal blood sugar levels, as well as in A1c results (average blood sugar levels over a 3-month period). But we need larger and more long-term studies. Researchers also found that the amount of sugar-lowering compound in ginseng plants varies widely.

Although the relationship between magnesium and diabetes has been studied for decades, we still don't fully understand it. Low magnesium may worsen blood sugar control in type 2 diabetes. Scientists say that it interrupts insulin secretion in the pancreas and builds insulin resistance in the body's tissues. And evidence suggests that a magnesium deficiency may contribute to some diabetes complications. People who get more magnesium in their diet (by eating whole grains, nuts, and green leafy vegetables) have a lower risk of type 2 diabetes.

Vanadium is a compound found in tiny amounts in plants and animals. Early studies showed that vanadium normalized blood sugar levels in animals with type 1 and type 2 diabetes. When people with diabetes were given vanadium, they had a modest increase in insulin sensitivity and were able to lower their need for insulin. Researchers want to understand how vanadium works in the body, find potential side effects, and set safe dosages.

Coenzyme Q10, often referred to as CoQ10 (other names include ubiquinone and ubiquinol), is a vitamin-like substance that's in meats and seafood. CoQ10 helps cells make energy and acts as an antioxidant. But it hasn't been shown to affect blood sugar control.

Most plant foods are rich in fiber, vitamins, and minerals. People with type 2 diabetes may focus on: brewer's yeast, buckwheat, broccoli and other related greens, cinnamon, cloves, coffee, okra, leafy greens, fenugreek seeds, and sage.

Some studies show that certain plant foods may help your body fight inflammation and use insulin, a hormone that controls blood sugar. Cinnamon extracts can improve sugar metabolism, triggering insulin release, which also boosts cholesterol metabolism. Clove oil extracts (eugenol) have been found to help insulin work and to lower glucose, total cholesterol, LDL, and triglycerides. An unidentified compound in coffee (not caffeine) may enhance insulin sensitivity and lower the chances of developing type 2 diabetes.

The scientific evidence thus far doesn't support the role of garlic, ginger, ginseng, hawthorn, or nettle for blood sugar control in people with diabetes.

If you're considering eating or using any plant-based remedies, talk to your doctor first.

Since being overweight and having diabetes are linked, many people with diabetes turn to natural alternative therapies that claim to help with weight loss, including: chitosan, garcinia cambogia (hydroxycitric acid), chromium, pyruvate, germander, momordica charantia (Chinese bitter melon), sauropus androgynus (sweet leaf bush), and aristolochic acid

There are also skin patch (transdermal) systems as well as oral sprays that supposedly curb your appetite and make it easier to lose weight. (One patch system uses homeopathic amounts of 29 different compounds to reduce appetite!)

What's the bottom line? Check with your doctor, because many of these so-called "obesity remedies" haven't been studied, aren't effective, or just aren't safe.

In 2003, ephedrine -- also known as ma huang -- became the first herbal stimulant ever banned by the FDA. It was a popular component of over-the-counter weight loss drugs. Ephedrine had some benefits, but it could cause far more harm, especially in high doses: insomnia (difficulty falling and staying asleep), high blood pressure, glaucoma, and urinary retention. This herbal supplement has also been associated with numerous cases of stroke.

Chitosan comes from seashells and can bind to fat to prevent absorption. Studies thus far haven't been encouraging for weight loss though.

Germander, Momordica charantia, Sauropus androgynus, and aristolochic acid have been linked with liver disease, pulmonary disease, and kidney disease.

A survey of herbal preparations for obesity found that many had lead or arsenic and other toxic metals. Some also had other ingredients that weren't included on the label. And sometimes, the wrong plant was listed.

You should talk to your doctor about any drugs, herbal products, or alternative and complementary treatments to make sure they're not going to interfere with your treatment or cause other problems.

Beware of claims that seem too good to be true. Look for scientific-based sources of information. The National Diabetes Information Clearinghouse collects resource information for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Reference Collection, a service of the National Institutes of Health. To learn more about alternative therapies for diabetes treatment, contact the National Center for Complementary and Alternative Medicine Clearinghouse.

Select brands of natural products carefully -- "natural" doesn't automatically mean it's good for you. Avoid products made with more than one herb. Read labels: Look for the herb's common and scientific name, the name and address of the manufacturer, a batch and lot number, expiration date, dosage guidelines, and potential side effects.

Stop taking the product and call your doctor right away if you:
  • Feel queasy or throw up
  • Have a fast heartbeat
  • Feel more anxious, worried, or unsettled than usual
  • Can't sleep
  • Get diarrhea
  • Get skin rashes

March 15, 2017

Help Make Meds Work Better

Brenda called me the day after this appeared and asked if I had read it. I said that I had not and she asked that I read it and call her back. After I had, I asked her what was so important about it. She said that it reinforced her feelings about controlling her diabetes, which many diabetes articles did not. Then she asked me to use it for a blog. I said I would consider it.

Richard Siegel, MD, co-director of the Diabetes Center at Tufts Medical Center in Boston says to obtain extra help from your medications, you need to make healthy changes in your life. This should help you do a better job of bringing your type 2 diabetes under control. By doing this, you might be able to cut back on the amount of medicine you take, or stop taking medicine.

Some things you should include:
  • Get regular exercise.
  • Eat a healthy diet.
  • Get enough sleep.
  • Lower your stress as much as you can.
  • Don't smoke or drink too much alcohol.
  • Track your blood sugar levels.

Diabetes drugs help your body balance insulin and your blood sugar levels. But you have to eat right and exercise to make them work properly, says Scott Isaacs, MD, an endocrinologist in Atlanta. Medications "are not a substitute" for those good habits, he says.

It's never too late to work with your doctor to create a treatment and lifestyle plan to help you manage your blood sugar and your weight. If you lose extra weight, your doctor may let you cut back on medicine, Isaacs says.

"Just to be able to limit the amount of diabetes medications you take is a good thing," he says. "Losing only 5% of your body weight is enough to make a difference." Set up a meal plan that's got plenty of low-fat foods that are high in fiber. Others may need more fat and less carbohydrates.

"A healthy diet is well-balanced and includes lean proteins from both animal and vegetarian sources, fruits, vegetables, and nuts," Siegel says.

Carbohydrates have the biggest effect on your blood sugar. So, limit or avoid added sugars and refined flours. That can help keep your glucose controlled, and you can still have healthier carbs like beans and whole grains. If you test and find that whole grains cause a significant increase in blood glucose, then you may need to limit these or avoid these in total.

Eat about 25 to 35 grams of fiber each day to help keep your blood sugar levels steady, Isaacs says. It can help you feel full longer, so you might not get hungry soon after eating. Eat fiber from natural foods like beans or whole grains rather than supplements, he says.

Examples include:
  • Avocados (a medium one has 8.5 grams)
  • Raspberries (a cup has 8.4 grams)
  • Blackberries (a cup has 8.7 grams)
  • Lentils (a half cup has 8 grams)
  • Black beans (a half-cup has 7 grams)
  • Broccoli (6 grams per cup)
  • Apples (a medium one has 4 grams)

Exercise is just as important as drugs to help manage your diabetes, Siegel says. When you move and rev up your heart rate, it’ll help you burn extra fat and lose weight.

Your routine should include:
  • Activity each day that gets your heart pumping, such as brisk walking or swimming
  • Two to three sessions a week of strength training, with stretch bands, free weights, or workout machines (on non-consecutive days)
  • Stretching or an activity like yoga every day to stay flexible

Regular exercise will build muscles, burn extra fat, and help your diabetes drugs work better, Isaacs says. "Muscle is important. Having more lean muscle mass will improve how well your body processes blood sugar," he says. He recommends weight training for a total of 1 hour (or more) every week to help you build more muscle.

Get more shut-eye, since it might help you keep your blood sugar levels in check. Poor sleep can also make you want to eat more during the day to boost your energy.

"Seven to 8 hours of good-quality sleep may also help to reduce your blood sugars and cardiovascular [heart] risk by lowering some of the body's hormones," Siegel says.

Stress can make it hard to rest at night. That might affect your diabetes, too. If you're anxious from family problems or work, for example, your body might make too many stress hormones, like cortisol. That tells your body to store more blood sugar and fat. When you feel less tense, the drop in cortisol might help your glucose levels, Siegel says. Stress can also cause your body to slow production of insulin. That’ll make it harder for your medicine to work well.

Find ways to relax. Exercise is one way to ease tension and sleep better. You can also try relaxation techniques like meditation.

To get your medications to work better:
  • Follow your treatment plan.
  • Take your diabetes drugs the way your doctor tells you.
  • Manage your diet and weight
  • Exercise regularly.
  • Get your stress under control.

Your doctor might add drugs to your treatment plan when lifestyle changes alone don’t keep your blood sugar levels where you need them, Siegel says. Even when that happens, keep up your healthy habits, because that can help limit the medication you need.

March 14, 2017

Many Doctors Cause Non-Compliance

Yes, I said this and I know this happens. Why, you ask. Because the doctor is in a hurry to see the patient and only half listens and decides quickly what is best for the patient to be able to move on to the next patient. It is rare to find a doctor today that listens or even asks questions for their understanding.

Most doctors will not even consider insulin as a first line treatment, but do consider it as a treatment of last resort. They often use the threat of insulin as a way to force their patients into working harder to manage diabetes using oral medicines. Instead, they prescribe regular metformin or one of the Sulfonylureas. Then the doctors are upset when patients complain if nausea from metformin prevents them from eating and they stop taking it. Then for those on a sulfonylurea the patient suffers an episode of hypoglycemia and this scares them into stopping this medication. They then label these patients as non-compliant.

Instead of prescribing metformin ER (extended release) that often is better tolerated, they tell the patient to take their medicine or find another doctor. When this happens, the patient might be better served to find another doctor, but the search could be futile because many doctors are the same and would rather label a patient non-compliant than do what might be of help for the patient.

The other issue is of food plans. Most doctors tell patients to eat more carefully or hand them a food plan with no explanation. These doctors will not refer the patient to someone that can work with them in designing a food plan that will help manage diabetes and explain the reason for the changes needed. In addition, they can help direct the patient to finding the needed foods that aren't always expensive.

Most doctors will not refer patients for diabetes education or to work with other professions that might provide assistance. They also will not do anything to find out about family, work schedule, or even lifestyle that can be changed. Many doctors prescribe one or more medications and have them scheduled for another appointment. No instructions are given for times when medications cause problems and no instructions about calling if there are problems. In other words, the attitude is here are your prescriptions and don't bother me until your next appointment.

This is why I will continue to support doctors in several states that are training peer mentors for education of diabetes patients they serve. Several of the doctors have agreements with a few nutritionists that are not registered dietitians or members of the Academy of Nutrition and Dietetics (AND). They also work with the diabetes patients to educate them about food and work with them in areas of nutrition for levels of carbohydrates they wish to consume.

I have heard from two of the peer mentors that I correspond with and they are very happy that the patients are gaining a benefit and most are doing quite well in managing their diabetes. I have even had correspondence from two of the doctors thanking me for finding two nutritionists, which led to three others. One of the doctors has found a CDE that will work with them and not against them like so many have in the past.

March 13, 2017

Your Education and Support Options

A.J called and asked why so many people with diabetes are not concerned about education and support. He continued that he must have been very fortunate to meet me when he was diagnosed. He said he was conversing with a person that had diabetes for over six years and did not know anyone else with type 2 diabetes.

I asked where he was and A.J said he would take him to his residence where the rest of us could meet him. I asked whom else he had talked with and A.J said I was the first. A.J added that the person was in his late seventies. I suggested Allen, Ben, and Barry to start and A.J said that Jerry would be there also.

When all of us were present, A.J introduced us and explained that we were members of a diabetes support group and that there were several other support groups that he could join. He admitted that he was not much of a joiner, but did need some education. Allen said that being a member of a support group would do him some good as well as then he would know more people with type 2 diabetes and could ask questions and learn about diabetes.

He admitted this and still felt it was more than he wanted. Barry said learning about the causes and complications of type 2 diabetes can help you manage your condition. Finding support from others can motivate you to take the best care of yourself.

Ben said knowing what factors contribute to type 2 diabetes can help you better understand your disease. You can also protect your family and reduce their risk of developing type 2 diabetes. Healthcare institutions, medical centers, and schools often have educational programs to help you learn more.

Educational classes can be offered as in-person meetings or online sessions. A teacher certified in diabetes education often teaches the classes. You may learn practical techniques.

As we were talking, I asked if he used a computer and he said yes. I asked Jerry to bring up this information. These are just some of the educational programs available:
  • The National Diabetes Education Program (NDEP) provides education to those diagnosed with type 2 diabetes. The program works with over 200 partners to make the most up-to-date information available. NDEP also provides support during both the diagnosis and treatment process.
  • The Diabetes Action Research and Education Foundation focuses on raising awareness about the health effects of diabetes. This program raises money to support diabetes research studies. They also offer educational articles about healthy living, recipes for meal planning, and videos related to diabetes wellness.

Living with type 2 diabetes can make you feel alone. You may feel overwhelmed by the lifestyle changes you need to make and the information you need to learn. A support group is a good source for meeting others who are in similar situations.

Support groups allow people with type 2 diabetes to meet together and provide encouragement. Being part of a support group reminds you that there are others who may share many of your same concerns. Specific support may also be an option for certain demographics, such as older adults or moms.

These are just some of the support groups available:
  • The ADA allows you to search for local chapters and learn about nearby meetings. Support groups may meet on a schedule, such as once a month in a specific location. Each meeting may cover different aspects of the disease or offer a chance to share stories.
  • The Defeat Diabetes Foundation offers a directory of support groups in local areas. The site offers many different types of meetings. For instance, support groups are available for adolescents and for caregivers.
  • Online support groups are an easy way to connect with others without traveling to meet in person. They offer the chance to join at any time, and members from almost anywhere can participate. Many online groups offer discussion boards, where members submit topics and others offer their insight. Online groups may also hold webinars or chats in which members meet online for discussion.
  • A health partner is another option for support. This is someone who knows about your diabetes and can meet with you regularly to provide encouragement, almost like a mentor. Your health partner may be someone who also has diabetes. Or they may just be a supportive person in your life, someone who motivates you to exercise or learn about preparing healthy meals. Think about the people in your life who would make a good partner in your health journey and ask someone to share in your success as you manage your diabetes.

Whether you want to learn more about type 2 diabetes through face-to-face meetings or through virtual support, you’re bound to find a setting that’s right for you. By taking time to learn more, you’ll be empowered to make a difference in your life and in your health.

After he read this, the fellow said maybe I should join a support group. Allen said to bring up my blog site and send him a link if he is interested. He was and Jerry asked for his email address and sent him a link to my blog site.

Next the fellow asked about joining our support group and Barry told him that we don't accept new members except during October and a vote must be taken to add new members. Barry said he could be allowed to attend as a guest and this would also be a way to decide when the time came.

At that, we ended out group discussion and several of us left.

March 12, 2017

Patient Advocacy Groups Take Money from Industry

You no longer need to speculate about patient advocacy groups as a new study has shown that these groups often have deep ties to industry and receive large amounts of money from industry.

Researchers say one solution to the problem is simply requiring disclosure from these groups, bringing them more in line with other medical stakeholders. The Sunshine law is part of the Affordable Care Act, passed by Congress in 2010. It mandates that every pharmaceutical and medical device company in the country annually disclose payments made to doctors and teaching hospitals for a range of activities — including promotional speaking, research grants, meals, and trips of at least $10 value. In addition, manufacturers and group purchasing organizations are required to report physician ownership or investment interests.

“We created a Sunshine Law for researchers that required full disclosure from the pharmaceutical and device industries about how they pay the doctors,” said Emanuel. “This needs to happen for patient advocacy groups.”

Read many articles about drug prices or the need for new medicines in the US, and you will find patient advocacy groups also in the debates, supposedly speaking up for the people with chronic diseases.

These organizations and advocacy groups represent millions of people with cancer, MS, and diabetes. These groups are often the first places people turn to for help when they receive a diagnosis.

The new research sheds light on a disturbing problem not disclosed by these organizations. Their deep ties with industry may be compromising their ability to serve the very patients they’re supposed to help.

A new study from the New England Journal of Medicine found that 83 percent of the nation’s top 104 patient advocacy groups — like the American Diabetes Association and American Cancer Society — receive funding from drug and medical device companies. Nearly a quarter got more than $1 million each year from the industry.

The researchers also found that, in addition to the financial support, at least 39 percent of patient groups had current or former industry executives on their boards, meaning industry players are helping guide and govern these organizations.

Research for decades has shown that cozy relationships between doctors and industry — for instance, industry-sponsored medical education and free drug samples from pharmaceutical companies — can bias doctors’ judgment in all sorts of negative ways.

And now the authors of the NEJM paper are concerned about the influence of industry on patient advocacy groups, which have a history of pushing for the FDA to approve drugs like “pink Viagra” (of questionable benefit to women) or helping label sugary breakfast cereals as healthy food choices for Americans. Reports have also surfaced about other patient groups that failed to advocate about rising drug prices — and happened to get industry funding — suggesting they may be working more for companies than for the patients they represent.

Medicine has become more transparent over the past decade, with drug and device makers now publishing information about which doctors and teaching hospitals they give money or gifts to, and medical journals and research institutions pushing for clear disclosures on conflicts of interest. The idea is that transparency is a disinfectant that reduces the risk of bias in research and medical practice.

Yet patient advocacy groups have mostly escaped scrutiny, said Ezekiel Emanuel, University of Pennsylvania researcher and co-author on the study.

“Patient groups have been seen to be knights in shining armor and above reproach,” Emanuel said. “They haven’t established [the conflict of interest] policies that everyone else — from major hospitals to researchers and journals — has had to.”

The new research suggests this has to change. For the NEJM paper, Emanuel and his co-authors looked at the Form 990 tax records, annual reports, and websites of the largest US-based patient advocacy groups, with annual revenues of at least $7.5 million. They found patient groups were failing miserably at managing their conflicts of interest. The vast majority took money from industry, and yet 88 percent of the organizations the authors looked at had not published policies for conflicts of interest.

More than 40 percent of the groups also didn’t publicly disclose the amounts of donations they received, and only 10 percent shared how their donations were used. So, in many cases, transparency about funding was a big problem.

Only one (the Child Mind Institute) had an explicit policy of no donations.

The American Diabetes Association got the most funding from the industry: more than $28 million in 2014 alone. Other groups got smaller amounts — that represented a huge portion of their annual revenue. The National Hemophilia Foundation listed contributions from drug and device makers between $8.5 million $14 million, for example. (The ambiguity there is the result of the fact that they only list ranges in their giving.) Their annual revenue is around $16.8 million, so the industry funding made up half to a majority of their earnings.

“A lot of people believe and really trust in patient advocacy groups,” said Susannah Rose, who authored another recent study in JAMA Internal Medicine on US patient advocacy groups, which came to similar conclusions. “These groups are often very powerful — not only providing care and direct access to patients and physicians — but they are also big players in national and state and local governments in terms of policy development and driving research agendas.”

And they need to maintain their independence from the industry to keep their credibility, she added.