By: Katie Sobiech
Here is our first story to give the broad overview from a Community Focus Group’s point of view.
We started with Community Health. Several groups work together to address broad health concerns for Summit County, including the Summit County Health Department, Austen Bio-Innovation Institute of Akron (ABIA), and others in the areas where they specialize. We didn’t know what we would find.
We quickly learned that diabetes is one of the largest health concerns in our area that is not very adequately addressed (as you will see in the following story). It is amazing that something that seems so common could be such a big problem.
Diabetes in Summit County is a very big issue and we as a community are very far from having an adequate response to it. Therefore the story didn’t take the shape we hoped it would. But, as one of my philosophy professors used to say, “It is better to know than not to know.” So, even though no one we could find has yet imagined a comprehensive response to diabetes in our community, here is the overview of what we know.
Everyone is affected by diabetes in one way or another. If you don’t have it, maybe a loved one or friend does.
Whether you suffer from diabetes, or a loved one does, it is a life-changing disease. From the dietary and lifestyle changes it demands to the mental toll it takes, it’s not easy to deal with.
The good news is there are ways to prevent, delay, or better manage it. And organizations such as the American Diabetes Association (ADA) are there to make your journey a lot less painful.
Several organizations in the Akron area are working daily to bring awareness and management for this disease. From churches to the workplace, they are providing the tools to make this journey a lot easier.
The Impact of Diabetes on Summit County
So what exactly is diabetes?
Diabetes is a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin (www.diabetes.org).
And is it an issue here, in Summit County?
About 11.5% of Northeast Ohioans have it, totaling about 330,000 individuals.
“I see it every day,” Jill Pupa, Executive Director of the American Diabetes Association’s (ADA) local chapter, said, “It’s so unacceptable.”
Almost 26 million Americans have it. And seventy-nine million people in this country are pre-diabetic, but don’t know it because they haven’t been diagnosed.
“The national estimates are that there’s an additional 30% (along with the 11.5% already diagnosed with diabetes), 20 and over, who are pre-diabetic already. That’s a huge portion of the population. Half of people 65 and over are pre-diabetic or diabetic,” Jennifer Teller, Head of the Chronic Disease Initiatives at the Austen BioInnovation Institute (ABIA), shared.
So 40% of the population is diabetic or pre-diabetic.
From large, well-known organizations like the ADA, to the ABIA, to a small, but mighty, inner city ministry clinic known as OPEN M, people everywhere are seeing the effects of diabetes on their lives.
“I would say diabetes is one of the top 5 diagnoses (we see). Lots of people have diabetes,” Liz Flaker, Nurse Administrator at OPEN M, shared.
Types of Diabetes
Breaking it down, there are 3 types of Diabetes: Types 1, 2 and Gestational.
Type 1 is normally diagnosed in childhood (known as juvenile diabetes), Type 2 is the most common and usually develops later in life, and Gestational develops during pregnancy.
Type 2 Diabetes is the most preventable, and is minimized through healthy lifestyle choices, diet and exercise.
“We’re seeing a lot of people with Type 2 diabetes. It could be caught more if people would watch their diet more,” Flaker confirmed.
The Importance of Education
The problem with this disease is that many people suffering with it don’t understand much about their diagnosis.
If they understood it better they would have more control over it. Therefore, it’s important to educate people on the disease and their need to understand the effects of their lifestyle choices.
One of the ADA’s three main focus areas includes Information and Education. For decades they have been funding researchers in Northeast Ohio to collect quality information.
In turn, the ADA is able to provide information to doctors and health care practitioners, as well as community organizations and churches, to better serve their patients, congregations, members, etc. Those who might never step through the door of a doctor’s office may pick up an informational brochure on diabetes at church.
The information is provided through professional publications, periodicals, tools and resources.
Lack of resources and education is a big reason many are succumbing to this disease.
“One of the things we’re really striving to do more of is better educating the patients. Some patients are saying they’ve never heard the information about carbohydrates and how that can break down into sugars in the body,” Flaker said.
At OPEN M they teach their patients that ¼ of their meal should be carbs and the rest should be proteins, vegetables, etc.
It’s as simple as that in some cases.
Not Knowing the Effects
Not knowing the effects of diabetes can be deadly.
Heart disease, stroke, high blood pressure, blindness, kidney disease, amputation and nervous system disease are all complications related to this disease.
Obesity is also a major factor that leads to diabetes. Obesity can cause hypertension, and hypertension diabetes.
Flaker says they’re seeing a lot of co-diseases with diabetes, such as hypertension and obesity.
“A lot of people get overweight, get hypertension and develop diabetes then also,” Flaker said.
“It’s the leading cause of heart disease and stroke. Unfortunately some people are diagnosed with diabetes after they’ve had a heart attack,” Pupa said, “It’s the leading cause of kidney failure. Two-thirds of people on dialysis are there because of diabetes. It’s the leading cause of lower-limb amputation and the leading cause of adult blindness.”
Also, as mentioned before, not being aware of nutrition information and how carbs turn into sugars, and how sugars can wreak havoc, can lead to a major breakdown of the body.
The Mental Load
Often overlooked is the mental load diabetics take on, which may be one of the hardest things they have to deal with.
“There’s a huge mental load that goes with it,” Pupa explained.
“This is a disease where ultimately the person who has it has to be the one to deal with it. You can have the best support system around but the doctor can’t just give you a pill and say you’re ok. I can’t imagine the mental load that comes along with it,” she continued.
“All of the ‘shoulds’ are very difficult for a person to do every single day 24/7,365, with absolutely no end in sight.”
This is why the ADA wants to provide as many resources as possible to eliminate as many barriers as possible.
“That way we can make it easier for people to deal with,” Pupa said.
Helpful things Pupa suggests for diabetics is connecting them to a support group so they realize they are not alone in this, and teaching them how to work with their healthcare provider to make better nutritional choices.
Doing Something about It
Local groups are there for those who would like to lighten their mental load when it comes to diabetes.
The ADA, ABIA, OPEN M and SUMMA are actively seeking ways to better the worlds of those living with diabetes.
Most seem to be aware of each other, and some are even working together.
“We work with the entire health care community,” Pupa said, “Including providers of all types, not just endocrinologists but internists, specialists, eye doctors, podiatrists, kidney doctors, nurses, certified diabetes educators, dieticians, home health-aids…the whole spectrum, pharmacists to patients.”
OPEN M receives their informational kits & supplies from the ADA and work closely with a local doctor’s office. They are also doing a diabetic study with SUMMA.
It’s clear that collaborations accomplish much more than one organization can trying to do everything itself.
Educating the Community
Not only does the ADA do research and provide information and tools to the community, but they get out there and make their mark through power-packed programs.
Programs by the ADA such as Project Power, Living with Type Two Diabetes and Stop Diabetes at Work catch people where they are at in their everyday lives.
OPEN M helps by giving out glucometers and telling clients how often to check their sugars. They also have follow-up appointments to download the results.
“We do a lot of monitoring their sugars,” Flaker said.
The ADA has partnered with many local churches and organizations.
Project Power is one program that they have in the African American Faith based community. The House of the Lord launched this, seeing positive results.
“It’s a great program in conjunction with Summa and the House of the Lord. ADA and some other community partners have a fabulous program going on there,” Pupa said.
“We talk about the seriousness (of the disease), risk factors, warning signs and give additional information and workshops to the churches to talk about all of the different topics pertaining to either diabetes prevention and/or management, nutrition, incorporating physical activity into your life, how to make it a multi-generational effort,” she continued.
They also have the program Living with Type 2 Diabetes specifically designed for those who are newly diagnosed with diabetes. It takes them through their first 2 years of diagnosis.
Stop Diabetes at Work is another program, designed to help companies keep their employees healthy.
“It’s not just for the person with diabetes, it’s for everybody,” Pupa said.
“We have a whole host of programs in the community,” she continued.
This all goes to bring awareness and the education people might not otherwise have.
And so far, the results have been very positive.
“We’ve had some great outcomes as to patient metrics and lowering blood sugar levels & BMI. We’ve had some people come off of medications. We had one woman who was on disability for years and was able to go back to work after the program. Really solid outcomes, but it’s done through collaboration,” Pupa said.
ABIA’s Pilot Program Launch
ABIA recently launched their small pilot programs, three to be exact, and hope to continue spreading to more sites.
It’s a six month program with twelve 2 hour sessions every other week.
“One of the strengths of this program is that we have experts. We have health care people who attend, dietitians, people who give nutrition advice, exercise physiologists who show people how to exercise. These people have answers to most of the questions that people ask about specific areas. Like ‘I can’t rotate my shoulder the way you are suggesting, what can I do instead?’ So it can be specifically tailored,” Teller shared.
And working in groups seems to be more helpful in leading diabetics towards successful management.
“What’s nice about the small group format is people feel very comfortable and safe, so they can talk honestly about what’s going on in their lives. It’s a support group, basically. They set their own goals, you know, I want to eat more fruits and vegetables, I want to lose 10 pounds, and then they report on their smart goals each session. They learn that it’s the small steps, not I’m going to lose 9,000 lbs. in a week. But I can lose 1 lb. a month. I can cut out 2 cookies a day,” Teller shared.
ABIA continues to run these programs in order to find the most efficient and effective ways to reach the diabetic and pre-diabetic population.
No Way to Measure
With all that’s going on in the community to combat this disease, tracking and measuring all the outcomes relating to what is being done is nearly impossible. Much of it has to do with being based upon lifestyle choices, case-by-case.
There’s no way to measure the percentage of people with diabetes who understand what they need to know. And there is no way to really count all of the people that have taken in the information provided to them, let alone put it into practice.
“There are certain pockets of the community, some people we don’t know if we’re reaching them or not. We’re in 110 churches at the moment, that’s approximately 55,000 people, but were they all there that day that we had the program? Probably not,” Pupa said.
There are many who have visited their website and received their newsletters, but there is no way to track and measure what each and every individual read.
Because no organization can control it all, the job of the ADA and others like them is to just do all that they can, in the best way that they can. To them, this includes providing information in the best way possible, trying to reach as many people as possible.
Ideally their goal is to prevent or delay diabetes in as many people’s lives as they can. And for those who already have it, provide them with better management tools.
“So they’re as well managed and healthy as possible,” Pupa said.
Dreams for the Future
When asked what they would do if they had all of the funds and volunteers they needed and could do anything they wanted to do, Pupa responded “We would expand our program and do so much more throughout the community.”
Among her dreams is also partnering with more community organizations, companies and hospitals.
“We could really collaborate and share resources,” she said.
It would also enable them to do more with their mission delivery and advocacy, creating stronger committees.
“We would be in every school, church and civic organization,” Pupa said.
As for Flaker, she shared, “In my dream of dreams, if we had a dietician here that would be great.”
She also added a nutritionist to her wish list, since they have neither on staff.
Volunteers are a key, missing part.
As of right now everything rests on the shoulders of the nurses during the short amount of time they have at intake with the patients.
They are also looking to start up classes next year. Flaker says weekly cooking and exercise classes would be ideal.
“They could see first-hand what it is they’re cooking up and how those carbs play out and so forth, and how they can eat more nutritionally,” Flaker explained.
“Because of their obesity and so forth they are on the cusp of becoming diabetic, so the key would really be prevention. We could have a cooking class, show them proper nutrition and ways to cook, and know what it is they need to do to control their diabetes,” she continued.
“Exercise has been shown to lower their sugars as well. The more they move, the better they’re going to feel and the more weight they’re going to lose and their sugars will come down,” Flaker said.
“I would love to have people like that to do weekly things with our patients!”
So what are the main obstacles standing in the way of accomplishing all these dreams these people have to fight diabetes? In a nutshell, it’s a lack of funds and volunteers.
More funds and volunteers are the main blocks, holding the ADA,OPEN M and others back from reaching more people and getting better programming at their facilities.
“There’s so much more we could be doing, but without additional funding we can’t do everything we want, as much as we want to,” Pupa said.
The ADA in Northeast, Ohio is a volunteer agency with a staff of just 7, which greatly limits what they are able to do.
“We can’t do what we do without incredible volunteers,” Pupa said, thankful for the volunteers that they do have.
But more are necessary. And there are so many opportunities to get involved, whether it’s once a year, or once a week. The ADA and OPEN M are looking to expand their programs.
If you are interested in volunteering or helping these organizations, or if you would like to find out more about their programs and get plugged in, make sure to contact them!
American Diabetes Association: http://www.diabetes.org