Advocating for Better Care in the Hospital

Most everyone knows that landing yourself in the hospital with diabetes can mean trouble for your diabetes management. A recent study by the NHS showed that patients with type 1 diabetes are 3.5 times more likely to die from COVID-19, and people with type 2 diabetes are twice as likely to die from COVID-19 in the hospital as compared to people who don’t have diabetes.

Patients with diabetes have complained about the quality of care they receive in the hospital setting for a long time, and improvements are slow to reach the bedside. So, what gives? And how can you better advocate for yourself should you find yourself being admitted to the hospital any time soon?

Know Your Rights

Even though you’re in the hospital, you still have rights that doctors need to abide by. If you’re willing and able, some hospitals will let you sign a waiver allowing you to manage your insulin intake and test your own blood sugars while in-patient. If you’re on a continuous glucose monitor (CGM) and/or insulin pump, make sure you ask the nursing staff if you can stay on your technology for the duration of your stay.

Note: Staff will still come into your room and manually check your blood sugar with a hospital-grade meter every few hours, even if you have your CGM on. The more control you can have over your insulin intake and blood sugar management, the better.

John, who lives with type 1 and is from Iowa, says,

“About five years ago I had an overnight stay at the hospital for surgery, and the nurse told me that I had to remove my pump for the stay. I explained I would feel more comfortable with my own settings and control. She finally relented, but made me fill out a sheet every time I bolused or checked my blood sugar, and I was yelled at several times when I forgot to fill out the form… I was happy when her shift ended.”

Ginger, who lives with type 1 diabetes, recalls her experience in labor and delivery with her baby,

“They withheld insulin from me, and I had to take secret injections in the bathroom to keep my blood sugar at an even 90 mg/dL for the sake of my soon-to-be-born child.”

Managing in a New Setting

Managing diabetes in the hospital setting is extremely different from everyday life: your exercise and physical activity levels are way lower, you don’t have control over much of your diet, and things like infections and stress levels can leave your blood sugar sky-high. Keep in mind that you may need to increase basal rates or doses during this time, especially if you’re dealing with illness or infection on top of environmental change. Some ways to improve your management while in the hospital include:

  • If able, walk laps around the floor to get some steps in
  • Don’t request the “diabetic meal”- these meals are extremely high in carbohydrate, and are just fixed at a certain number of carbohydrates per meal. They are not low-carb. Instead, opt for ordering menu items “a la carte” where you can choose a few different protein options and low-starch vegetables as a side
  • Increase your basal rates or doses accordingly (do not just continually bolus, as this can cause your blood glucose levels to crash)
  • If you’re on an IV drip for hydration, make sure it is NOT a dextrose drip (this is the most common kind and will quickly send you into DKA)
  • Make sure the hospital staff allows you to dose for meals before you eat! (due to liability issues, many will try and force patients to dose after they’ve eaten).
  • Try mindful meditation or gentle chair yoga to calm the mind
  • Remind  yourself that your stay is only temporary

Amy, who lives with type 1, expresses her frustration over the meal options that hospitals often provide for their patients,

“Although the doctors were wonderful, I found that they, unfortunately, do not get involved with a type 1 diabetic’s diet. So my first night there (before surgery) I was given a very high-carb meal. Pasta, bread, fruit, and dessert. The nutritionist told me that this was the ‘recommended diet’ since it was pre-carb counted.”

Allie from Brooklyn agreed that getting adequate care in the hospital setting was almost impossible,

“a hospital I was in once denied me insulin for a full 24 hours because they couldn’t get an endocrinologist on call to come consult…”

Advocate for Yourself

When all else fails, you must advocate for yourself. Being in a hospital can be lonely and scary, but if you’re well enough to advocate for better care, you must. Many hospitals and providers are not up to date on the latest diabetes technology and care, so arm yourself appropriately. Some helpful information to have on hand:

  • Contact information for your endocrinologist and primary care physician
  • A printed out diabetes medical management plan detailing how you manage your diabetes to provide to the hospital staff
  • A printed list of all your prescriptions
  • Contact information for your pharmacy and pharmacist
  • An emergency contact’s information

Judy, a type 1 from Georgia, laments,

“…after the hospital began hydrating me (with a dextrose drip), I continued to get worse. They ended up not even putting me on an insulin drip, and removed by insulin pump so during that time I had no insulin on board whatsoever. Eventually, I was transferred to the ICU until an endocrinologist finally realized what was going on…”

Advocating and standing up for yourself can sometimes be the best guarantee that you will receive the treatment you need and deserve when in the hospital setting.

Diabetes is a multifaceted condition affecting major organs and entire body systems. It requires close, quality care and fine attention to detail. As diabetes can affect everyone differently, one must work with their healthcare team to create and follow a care plan based on one’s individual needs. Making sure that patients get this quality care in the hospital setting is crucially important, both for acute and long-term health outcomes.

Source: diabetesdaily.com

Type 1 Diabetes: Advocacy 101

This content originally appeared on Beyond Type 1. Republished with permission.

By Katie Doyle

If one of your resolutions for 2018 was to learn more about getting involved in advocacy, be a more effective advocate or support advocacy groups, we have a story that will get you motivated! Check out this profile for some advo inspo:

Advocacy

Image source: Beyond Type 1

Cameron Keighron, a student at National University of Ireland (NUI) Galway, is making strides in his community by standing up for his LGBT peers and people with disabilities. You may recognize Cameron’s name from our 2017 story about an NUI Galway research team’s D1 now study on the relationships young adults with type 1 have with their healthcare teams — Cameron is a member of the Young Adult Panel that advises the D1 now study. We recently picked his brain to find out what it takes for those of us looking to dive into a certain project or be a more active participant in our communities.

Become the Advocate You Need

“I was the first and only type 1 diabetic diagnosed in my family and was thrust into a world of complete confusion,” said Cameron, who was diagnosed when he was 16. “As is so common with my generation, I took to the internet to find some sort of support with this transition in my life. I found a group on a diabetes forum that would become my support group for the next number of years, juggling my diabetes with high school, university and much more.”

Cameron’s positive experience with the diabetes online community inspired him to give back when he found himself in a position to do so. “Before going to university, I asked to switch to insulin pump therapy. I became somewhat of a support for people I had met online for pump issues and transitioning from childhood to adulthood. I became the support that I so desperately needed when I was first diagnosed.”

Recognize When the Time Is Right

Cameron is currently a graduate student completing a master in Regenerative Medicine. After joining three student societies during his undergraduate years, Cameron became a disability advocate at NUI Galway and found a calling in administering to student societies as a grad student.

“I am heavily involved in LGBT and disability activism in Galway and the wider country,” he said. “When I finished up my degree it was a natural progression, really, to move from one side of societies to the other. I had been working on the development and governing committee of societies, working hard on implementing policy changes to the way societies ran themselves. With this, I found my home within my job of policy and training development. Currently, I mentor new and existing societies through their constitutions and through the training programs we design for them.”

Think Globally, Change Locally

Like many of us with type 1, Cameron has overcome other challenges through his work in the community. “I came out as a queer trans man at 19 and have been campaigning for equal rights ever since. NUI Galway strives to be inclusive of all LGBT+ students and staff. The biggest change that I have seen is the willingness to talk about these issues, to talk about what is going wrong and how can we fix it. We recently brought in gender-neutral bathrooms for all people across campus. We strive to educate both the student and staff population on LGBT+ issues and raise awareness of how people can get involved in the campaign for equality.”

He has seen broad impacts in his work in the diabetes sphere as well: “After becoming involved with the Young Adult panel, my passion for diabetes advocacy grew, especially in my age group. I saw what wasn’t working with my care and helped develop innovative solutions in the hopes of correcting this. We were given the opportunity to help write papers, present at conferences and influence the project in every aspect of its development. Right now, I have signed on to be a part of the second phase of the project where we are hopefully to be recognised as co-researchers.”

Appreciate Every Victory

“My relationship with my diabetes team was essentially non-existent before the Young Adult panel. After joining the panel I started to build up a rapport with key members of the team. Since engaging with the group, I have found it a lot easier to engage with the team and that my own diabetes care improved.”

Cameron notes that advances in his college setting have improved his overall experience there. “When I started in NUI Galway no one really knew what “transgender” meant, no one had a way of relating to me and how I felt. I found a group of people who worked with me and on my behalf, lobbying for change and recognition, a fight still on going in many universities. For me, NUI Galway became a home, it adapted to its ever-changing demographic with provisions in place for people to change their student records and ID cards if needed.”

Keep an Eye on the Long-Term

For Cameron, advocating for any cause takes a lot of energy and focus. “In all the areas that I am involved with, in the positions that I hold, you generally get asked some inappropriate questions and it’s tough to find the fine line between answering their question with respect and without getting angry.”

“It’s also tough, I think, because as humans we surround ourselves with like minded people, that’s just who we are attracted to. So when we leave those bubbles and see that actually people in the world still have the crappy views on people it can be tough to keep motivated.”

Despite challenges, Cameron is hopeful about the future. “People with disabilities are becoming more and more visible on campuses across Ireland. They are given a voice to talk about their experiences and where we can do better.”

Source: diabetesdaily.com

Insulin Access: The Haves and Have-Nots

This content originally appeared on Beyond Type 1. Republished with permission.

By Alexi Melvin

In the United States, the complex healthcare system acts as a barrier for many people who require insulin to live. Without insurance, one vial of insulin can cost up to $350 – with most people requiring multiple vials of insulin each month. The high list price makes insurance coverage a matter of survival. It also sets up deep inequalities – depending on the status of each person’s health insurance coverage, people who need insulin are either able to get access to more insulin than we actually need, with multiple avenues to help facilitate that access (patient assistance lines, 24/7 nurse support, etc.) or we struggle to obtain enough insulin to keep ourselves alive, with little to no access to support resources. Given our current healthcare system, we are forced into one of two categories: the “Haves” or the “Have-Nots.”

This is not to say that the “Haves” do not also struggle with barriers – insulin access generally is often complicated, requiring an immense investment of time and energy to navigate insurance coverage, formularies, referrals, etc. But the situation for the “Have Nots” is often dire, with frequent and consistent roadblocks to adequate care just to stay alive.

Socioeconomic disparities are exaggerated in the healthcare system – those with lower socioeconomic status experience more frequent barriers to healthcare. This creates a situation in which those with less access to financial and social resources are also faced with fewer healthcare resources, compounding their unmet needs. People with diabetes who fall within a lower socioeconomic group struggle, in varied ways, to get a sufficient amount of insulin to efficiently manage their disease.

In 2019, the International Journal for Equity in Health conducted a study to gain more clarity on this issue. The journal conducted “in-depth face-to-face interviews” with 28 patients and the 6 healthcare professionals who cared for the patients. The framing of the study centered around access to healthcare for “vulnerable groups.”

The results showed that access to insulin and other management support was indeed difficult for those within a lower socioeconomic group, due to a number of factors including “non-alignment with healthcare professional goals, poor health literacy, psychosocial problems and poor quality communication.” These factors were thought to also hinder the patients’ ability to obtain support and maintain communication with hospital staff that could vastly improve their diabetes management and knowledge, such as nurses, diabetes specialists and diabetes educators.

Let’s imagine, for example, a person who was raised by an upper-middle class family, in a nice neighborhood, and had the means to obtain a higher education from a well-respected institution. Statistically, that person would have had an upper hand when it comes to establishing a steady career path, when compared to someone who may have been born into a family that was less economically stable.

Reliable health insurance in the US is only afforded to us if we are able to do one of two things: secure a job with a stable company that recognizes the importance of comprehensive healthcare benefits – or be in a financial position to pay for it out of pocket. For those few, the “Haves” who were raised amidst or propelled into some element of privilege, they can wind up with an excess of insulin – even letting their backstock expire before they’ve had the chance to use it.

Those people living with diabetes who fall into the “Have Nots” may find themselves in a position where they ration insulin or are forced to obtain supplies from others. There are resources available for those who are in immediate need of insulin, but they require qualification and navigation, and many people may not know where to look for help because of lack of connections within the very system that has already excluded them. Our healthcare system is not easily accessible by design.

It is truly baffling how this situation is not reversed – how the healthcare system in the United States does not prioritize those who urgently need supplies due to financial and socioeconomic hardship. Reliable and consistent insulin access should not be a luxury reserved for the few. It should be the standard.

Source: diabetesdaily.com

Patient Advocate Speaks Out on Eli Lilly’s Lowered Prices

By Madelyn Corwin

On April 7, 2020, Eli Lilly announced it would be selling its insulin to select patients for $35/month. This covers the uninsured and people with high deductibles. While myself and the entire diabetes community are happy lives will be saved through this news, we are not going to commend Eli Lilly for doing what they could have and should have done a decade ago.

We have already lost lives from rationing insulin, people have lost their vision, their limbs, their college savings accounts, their cars, their homes and so much more. People have literally chosen not to marry the love of their life just because they want to remain on Medicaid for their insulin. People have turned to the black market to buy insulin for years because of Eli Lilly, Novo Nordisk, and Sanofi’s price gouging. We can never get those lives back, those homes back, or people’s eyesight back. No amount of money or affordable insulin can fix the irreparable damage that has been done by the big 3 insulin manufacturers.

Madelyn Corwin, advocate for affordable insulin

This is not to say I’m mad about the $35 announcement. You have to understand where thousands of insulin4all advocates are coming from right now. Many advocates have made unthinkable sacrifices just to be able to pay that bill at the pharmacy counter so they can live to see tomorrow. People have skipped meals for days and worked out to the point of injuring themselves to bring their blood sugar down because they didn’t have enough money for more insulin. Many have rationed and been put in the hospital for DKA, only then to receive an even larger medical bill that they cannot pay, all at the hand of companies like Eli Lilly.

While the end goal is obviously and will always be affordable and accessible insulin for every person on this planet, we will not praise any manufacturer for doing the right thing after they’ve done the worst thing possible for years. It’s like when a country starts a senseless war and then ends it ten years later. Like, alright. Thanks, I guess. You profited, I guess. But the money paid to that senseless war by citizens is now gone and lives on both sides are also gone. So, I guess you did the right thing by ending the war, but why were we even there to begin with? And now, there is no way to repair the damage. So now, we will hold X country accountable forever for the lives and money lost, and this will be in the history books. This analogy works well with this $35 insulin issue.

There will always be an ulterior motive to these types of things, especially when Eli Lilly and other insulin manufacturers have pushed against patient advocates when trying to get emergency insulin access bills passed in their states (Alec Smith Emergency Insulin Act). These manufacturers send money to every politician they can possibly get to take their checks – yes, that includes the state level as well – so do your research. Here is a list of groups Eli Lilly has given money to. A big reason bills cannot get passed quickly or get passed at all is because there are many insulin price gouging lobbyists standing in the way. Why would Lilly suddenly lower the price when they spend millions lobbying our politicians? Why would they do this when they jump through patent loopholes (evergreening). Why would they be continuously paying off anyone trying to make a cheaper generic? Something does not add up.

cost of type 1 diabetes infographic

Infographic: T1DInternational.com

I may be pessimistic, but personally I do not and will never trust any insulin manufacturer after what they have done. I know a lot of people do not understand the capacity of the insulin4all movement, but it’s more than the t-shirts and social media posts. A great deal of patient advocates are working extremely hard every single day to get the insulin price-gouging story heard. There are hundreds of advocates interviewed by large news networks annually. These advocates have built personal relationships with their representatives and advocates that spend hours a day on social media trying to make a difference.

Insulin manufacturers have seen this; they’ve seen the uproar. They know we exist, and they know we are angry. They’ve known this for the last six or so years, yet they have done nothing. In fact, they mock us, and they pay off politicians to push their big pharma narrative. Common example: “Insulin has to be priced at $300 for research and development.” We’ve all heard it from some politician who happily accepts thousands of dollars from an insulin manufacturer.

Eli Lilly CEO David Ricks has even laughed at the question of affordable insulin and pushed the blame onto insurance companies and PBMs. While advocates are 100% aware that insurance companies and PBMs also play a large role in what the price of insulin is in the USA (you know, since they all profit off of our struggle at the pharmacy counter), he has twisted the narrative to make Lilly look like the good guy.

Lilly does this frequently; it’s probably in their training manuals by now. They gaslight patients and try to make it look like we’re the ones who don’t know what’s going on. Don’t fall for it. This is classic insulin manufacturer PR, they’ve been doing it for years. They love to push the blame elsewhere when in reality, those are the people they happily work with and write up their contracts with, all so they can make billion-dollar profits. In reality, they can just lower the price. They just proved that to us on April 7, 2020. Again, this should show you this company cannot be trusted and you should rely on your own personal, unbiased research.

On a recent conference call (March 16, 2020), Diabetes Connections with Stacey Simms got on with Andy Vickery at Eli Lilly. Andy is on the Lilly Diabetes Insulin Team (skip to 3:00 to hear the question and answer). Stacey asks Vickery, “In a time of really what is very much uncertainty, understanding that people with diabetes cannot live without insulin, why not be a hero in this space? And say right now that Lilly will cut the price of insulin to $25 or $35? Why not let people fill prescriptions for what they are written? For a price that would obviously help people around this country feel better about the one thing that they are… devastatingly worried about?”

Vickery responds, “I appreciate the frustration… If we cut that price, could that disrupt the supply to our other supply channel partners… We have contracts in place with them for a certain price. It would go beyond our ability to cut that price. We would have to renegotiate with them… We are constantly looking at the things we can be doing at this time…” He continues on to talk about their authorized generics.

Let’s take a look at how he also, like David Ricks, pushes blame onto PBMs and insurance companies while taking no responsibility at all for their role in all of this. He says he would have to renegotiate with PBMs and wholesalers. This is quite funny because that means if they lowered the price of insulin to $35, then they got everyone in their supply chain to agree on that. Why didn’t they get everyone to agree and play nice in 2012 when this became a devastating price for Americans to have to pay? Why didn’t they do this after we lost our first life to insulin rationing? Because they enjoyed the profit they were making and felt no guilt. There will always be an ulterior motive with these people.

There is also always a “fine print” to these copay cards. If you’ve ever used a patient assistance program, there’s a good chance you know what I’m talking about. Diabetes advocates are still doing research and looking for answers from Lilly reps regarding the terms and conditions. When does this end? How much can it be used? Is there a maximum amount, like with all of their other copay cards? As far as it looks right now, this program could be maxed out at a $7,500-annual limit (so, it’s good for less than a year of insulin for the average patient). Laura Marston, an incredible diabetes insulin4all advocate and lawyer has been compiling this information for us and will provide us with more info as she receives it. Again, I am looking for further confirmation for this and we have people searching high and low for the extra terms and conditions.

[UPDATE: Laura has done some more investigating on the situation, “It’s a limit on the difference between retail price ($325 times number of insulin vials) and $35 if you’re uninsured. If you’re insured, it’s the difference between your copay and $35.” We have still not seen official terms and conditions released by Eli Lilly.]

To close off this article, I decided to reach out to a few of my friends with diabetes who have struggled to get their insulin since their diagnosis and people who lost family members with diabetes to insulin rationing. If you are still struggling to understand why people will never commend insulin manufacturers for making bare minimum decisions, read through these:

“I believe this is once again another PR stunt. We have seen them do this type of thing several times over the past few years when pressure gets put upon them. If it was so easy for them to lower the price during this time of a pandemic, why did they not lower it years ago when people were crying out for help, people online begging for assistance, people like my son Alec who died because he could not afford his insulin. I want to know why now? Why after meeting with Mike Mason and sharing my story of how Alec died and many others stepping forward and sharing their stories. How long is this price going to be in effect for? How are they going to transition people from paying $35 now to $350 when this crisis improves?”

– Nicole Smith-Holt, who lost her son to insulin rationing in 2017.

 

“So I had to purchase out of pocket on multiple occasions. Usually, at fault of my insurance company (which would also be the fault of Lilly considering the contracts they write up and agree on with them), but again, we know it shouldn’t come to that. First time, I broke my last bottle. I was still 10 days from refill through insurance. I had to pay out of pocket, $280 for a vial. Second time, my insurance changed and told me I could only get Novolog covered, but I only had a prescription for Humalog. My doctor’s office wasn’t open and able to get me a prescription, so I had to pay the list price out of pocket again with the Humalog script I had on file (I would’ve died if I didn’t get it). Third, was because they forced an RX required on the box, I didn’t have a prescription, and I was running low on Humalog. I was out on tour for a whole month and running on my last pump fill up on my flight home. My flight was delayed overnight, and I was about to run out of insulin within the next 4-5 hours. With no prescription and no one up at 2 AM to get me one, I had to go to the ER and have them fill my pump, which took 3 hours of waiting and a bill of $550 for 100 units of insulin. Thanks, Lilly.”

– Ryan Ank

 

“I think it’s great that they’re doing this because people really need all the help they can get right now. Eli Lilly has been the leader of everything insulin-related. This means they gouged prices, and the other pharma companies followed. They lowered prices, albeit temporarily, so the others might follow. My anger stems from this, proving they could have lowered the prices at any time. So many people died from insulin rationing. Their deaths could have been prevented. So many lives cut short. Lilly’s responses are always R&D, but this $35 cap is proof of their lies and greed.”

– Nicole Hood, who lost her son to insulin rationing in 2018.

Source: diabetesdaily.com

The FAA Continues to Ground Commercial Pilots with Insulin-Dependent Diabetes

This content originally appeared on Beyond Type 1. Republished with permission.

By Lala Jackson

On November 7, 2019, the Federal Aviation Administration (FAA) lifted their previous ban on certifying insulin-dependent people with diabetes as commercial pilots. The statement followed a 2015 announcement that the FAA would begin considering certification for insulin-dependent people with diabetes.

Private pilot Chris Hanrahan initially applied for his commercial pilot medical clearance in 2015, when the FAA originally announced they would be considering clearance for insulin-dependent people with diabetes. According to Chris, he has since learned that his original application was used to “acquire data to develop protocols. They were never intending to use our data to admit us, but to develop their guidelines.”

Chris filed his second commercial pilot medical clearance application on December 3rd, 2019 and has been told by the FAA multiple times that he would hear back within three weeks. Now, at the start of March 2020, the FAA has told Chris he will hear back by the end of the month. For Chris and other pilots waiting to hear back, lack of clear expectations and an honored review timeline from the FAA creates confusion and frustration.

The FAA has extensive guidelines around medical certifications for a variety of disease states that have the potential to impact the safety of flights. With insulin-dependent diabetes, the FAA has expressed concern about the “risk of subtle or sudden incapacitation due to hypoglycemia.” Because of this, they have created an extensive set of steps for pilots with diabetes to receive medical clearance.

For those seeking medical clearance to fly commercially a continuous glucose monitor (CGM) is required, as well as a significant amount of documentation including:

  • a minimum of 6 months (or 12 months, depending on which guideline document is being referenced) of CGM data that shows percentages of time in range
  • additional blood glucose check by fingerstick data
  • a detailed Excel spreadsheet that notes glucose levels during past flights and any actions taken to correct levels
  • reports on episodes of blood sugar <70 mg/dL or higher than 250 mg/dL for the past year
  • HbA1c data from the past year
  • eye and cardiac evaluations
  • a detailed diabetes and medical history
  • and comprehensive lab work including thyroid and B12 levels

Additional reports for recertification are required every three months. Despite the extensive application data required, the FAA reports they’ve received ten applications from insulin-dependent pilots since their statement in November. However, none have yet been approved. The FAA says they’re working on reviewing applications within 90 days on a case by case basis.

“They keep changing the time frame,” Chris told the Beyond Type 1 team. “There’s no explanation or logic at to why they’re doing this. They’ve told me they’ve had my stuff looked at by their endocrinology team and they told me everything is fine, they’re just waiting on signatures.”

For Chris and pilots like him who have followed every guideline to apply, a clear decision from the FAA is what they deserve.

Source: diabetesdaily.com

Treating Type 1 Diabetes in Bangladesh: Dr. Kaufman and Life for a Child

This content originally appeared on Beyond Type 1. Republished with permission.

By Francine R. Kaufman, M.D.

Greetings from Dhaka

Traveling over the city by air and then languishing in traffic forever to get to the hotel, I see what now seems typical of a developing country: cars, motorbikes, rickshaws, and people at a standstill jammed up in traffic with horns blaring like a discordant symphony; people living on the streets; old buildings with new structures next to them supported by cranes and rebar trying to reach for the sky.

Yesterday, I was at the main diabetes hospital all day seeing patients. I was with Graham Ogle, who runs Life for a Child and continues to deserve sainthood for his global work in bringing care, education, supplies, and life to close to 21,000 children around the world who likely would perish without his efforts. Graham is so humble and focused; he seemingly knows everyone and everything about the care of children with diabetes in Dhaka, as well as everywhere Life for a Child collaborates with local health care providers in over 40 countries.

Kid

Image source: Beyond Type 1

The diabetes hospital – called BIRDEM – is run by Dr. Bedowra Zabeen, an amazing woman and endocrinologist who is known worldwide for her work throughout Bangladesh. They follow over 7,000 children with diabetes (there are 9,000 total in all of Bangladesh); hundreds come in each day for outpatient care or to be admitted. The Life for a Child program follows 3000 children and young adults (up to age 26) and the Novo Nordisk program helps with another 3000 children. This means few can afford to buy insulin and supplies on their own since there is still insufficient support by the government or insurance programs in this country. From Life for a Child, they can only get regular and NPH insulin and 1-2 blood glucose strips per day. This is how I practiced pediatric diabetes 25-35 years ago. There are a few using newer insulins and even a few with insulin pumps, so if there are resources, families can buy better diabetes care than what is offered by these free charity programs.

Work to Be Done

The patients come through like a torrent. First, a newly-diagnosed child, so emaciated and weak, she could barely stand up. Then 4 children who seemed to be about five-to-six-years old, not adequately treated because they don’t have enough glucose strips, and as a result no chance to appropriately adjust insulin doses. School was a problem for each, either they had to miss a lunch shot or their mother had to come to administer it – most often without first doing a blood test. One was very hyperglycemic because her parents were unable to deny her anything she wanted to eat.

There were also two adorable 17-year-old twin girls, diagnosed within a year of each other, who had just graduated from high school and were waiting to see if they could go on with their education. Despite sleeping late, missing shots, and pretty much de-prioritizing diabetes (the universal story of adolescence and young adulthood), their A1cs were still good, mainly because they had way too many low glucose levels. There were many more routine cases: children taking only two insulin shots per day, having too few blood tests, not having refrigerators to store their insulin (they use clay pots instead), and feeling stigmatized and ostracized.

Then came the really hard cases: a child with severe insulin resistance (likely a gene defect due to too many consanguineous marriages in this country) taking 200-300 units of insulin per day, a child with dermatomyositis (a severe autoimmune disease of the skin and muscles) taking 500 units or more a day and chemotherapy and suffering the crippling joint effects of this rare disease that is most often complicated by diabetes. The fact that her hands were stiff and crippled made it all so much more amazing that she is an artist.

There were a number of pubertal children and even prepubertal children with type 2 diabetes – it’s hard to find someone who is not overweight/obese in Dhaka City, and the children appear to be the most affected. Bangladesh has one of the highest rates of diabetes: 8-10% of the population is affected and it is expected to quickly increase to 13% – and this is mainly Type 2. There are higher rates of kidney complications, but the most difficult aspect of having diabetes in Bangladesh is the stigma, the lack of education concerning its cause (children and their mothers are blamed), and the chance that anyone – particularly a child – can succeed with this disease.

Why We’re Here

Our type 1 diabetes workshop in Dhaka was sponsored by Life for a Child, the Bangladesh Diabetes Association, and ISPAD (the International Society for Pediatric and Adolescent Diabetes), and was organized by Dr. Zabeen. Forty-five physicians and nurses, dietitians, and psychologists from 11 cities and areas across Bangladesh attended our lectures and presentations. Some of the participants flew to Dhaka from the north, took trains for hours, and then battled the Dhaka City traffic to get to the Dhaka Club. It was a parade of brightly colored, sparkling saris since most of the attendees were women; many of the men had red hair and beards from henna staining.

Kid

Image source: Beyond Type 1

Our lectures were intermixed with lectures delivered by Dr. Zabeen, Dr. Azad (who started the field of pediatrics in Bangladesh), and a few other physicians who related the Bangladesh experience in childhood diabetes, pregnancy and diabetes, Ramadan and diabetes, and nutrition and diabetes. They discussed the struggles of managing this difficult disease in an area of our world with unimaginable poverty, very limited access to lab testing, supplies and medications (all with no way to pay for them short of a charity program, like Life for a Child), and in a culture deeply rooted in both prejudice and misunderstanding about diabetes. Schools make no concessions for the children at all, blame is placed on mothers and the children themselves, and they are often denied basic opportunities.

A young, 26-year-old woman who was diagnosed with type 1 diabetes (T1D) at 7 years of age came to speak to the seminar attendees. As a result of having diabetes, she was devalued so her father married her off at age 14. As usual in the villages, she went to live with her husband’s family. Since she arrived 12 years ago, her mother-in-law has not allowed her to have food unless her husband is home – and he works all day. So she fasts all day long, gets frequent and severe hypoglycemia, and often takes no insulin at all. Somehow in the midst of this all, she had a baby 5 years ago, and this little 5-year-old girl was skipping and running around, and adorable.

After our lectures each day, we took selfies with the attendees, and we even danced after my lecture on physical activity. The sway of the saris was mesmerizing and the joy and laughter totally infectious. Amidst it all, their questions and comments revealed how committed they all are to advance diabetes care for children in Bangladesh despite all of the obstacles. It was a struggle to go to the airport, but I somehow sat in the backseat and resigned myself to the stop and go traffic, the veering of cars from one lane to the other, and the constant cacophony of horns. It seemed to fit with my simultaneous feelings of despair and hope – with a great belief in Dr. Zabeen and her teams of amazing health care providers and her patients willing to share their stories.

Source: diabetesdaily.com

From Dance to “American Ninja Warrior”: Talking to Christina Martin

This content originally appeared on Beyond Type 1. Republished with permission.Christina Martin has had type 1 diabetes since she was 13 years old. In high school, she started her own foundation – Type Zero – to help others know they were not alone. This year, Christina attended the JDRF Children’s Congress and participated in Season […]
Source: diabetesdaily.com

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