Advocate

November 5, 2010

Recently I took part in a diabetes awareness and fundraising event unlike any other I have been a part of. The High Five for Fashion show held recently in Kansas allowed me to strut the runway and help the American Diabetes Association out at the same time! This event featured trendy vendors, raffles, and a high-energy fashion show.

Don’t worry advocates- on my first walk I made it to the end of the run way, whipped around, and flashed that shiny insulin pump for all to see! Cheers and claps erupted as I was once again reminded of my supportive diabetes community and their equal desire to fight this thing as creatively as we can.

July 1, 2010

Crystal Jackson is considered an expert in the rights and legal protections offered to children with diabetes in schools. Because managing diabetes is a 24/7 job, it is important to have support at school as well. The American Diabetes Association’s Safe at School campaign offers resources about diabetes care at school as well as legal advocacy to those in need of help working with the school to develop written management plans.

It is extremely important that schools provide a medically safe environment for students with diabetes. They must have the same access to educational opportunities and school-related activities as their peers. The Safe at School campaign consists of three principles:

• All school staff members need to have a basic knowledge of diabetes and know who to contact for help.

• The school nurse is the primary provider of diabetes care, but other school personnel must be trained to perform diabetes care tasks when the school nurse is not present.

• Students should be permitted to provide self-care whenever they are at school.

To ensure all of these principles are met, a written care plan must be created. Access to equipment, medication, and assistance is essential to this plan, which aims to make the transition from home to school (and vice versa) smooth each weekday. Parents have a responsibility in this, too - to be a resource for the school nurse, be accessible to the school, encourage age-appropriate self-care for the child, provide the school with proper equipment/food/supplies, and get the physician’s orders for the school. The responsibilities of the school include implementing the physician’s orders, complying with laws, working with the parents to develop a working management plan, training school staff, and communicating with parents.

There are two main federal laws that protect children with diabetes at school: the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. Only schools that do not receive federal funds are exempt from following the ADA and 504 legal protections. Section 504 of the Rehabilitation Act of 1973 offers up the right to form a "504 plan" within the school. This applies to public and private schools receiving federal funds. The ADA covers daycares and camps as well, unlike Section 504. The ADA applies to Americans with a disability - a physical or mental impairment that can limit one or more major life activities, including endocrine function. This does not mean we are disabled! Our pancreas doesn’t work right, so we need to assert our rights as people with diabetes and not get caught up in silly labeling.

It is of paramount importance that all children and youth attending a publicly-funded school assert their rights and ensure their wellbeing to the fullest extent of the law as offered by 504 plans and the Americans with Disabilities Act.

I needed a 504 plan at my high school to make sure there would be no questions as to whether I could check my blood sugar during class or give myself an injection/bolus while learning. Just as diabetes should not disrupt your goals, diabetes does not need to interrupt your learning process either!

June 29, 2010

Hey Everyone! It’s my last day here at the American Diabetes Association’s Scientific Sessions! As you can see from my blog, I’ve been busy running around and trying to learn as much as I can.

I stumbled into a late breaking session this morning. The ACCORD study, or Action to Control Cardiovascular Risk in Diabetes, was a large-scale clinical trial which tested treatment approaches to find the best strategies for decreasing the high rate of cardiovascular complications (heart attack, stroke, death) among people with Type 2 diabetes. According to the study, adults with Type 2 diabetes are two to four times more likely to die of heart disease or stroke than those without diabetes. It is saddening to know that 65% of those with Type 2 diabetes eventually die as a result of heart attack or stroke.

The three treatment strategies utilized in the ACCORD study to reduce the risk of these complications were intensive lowering of blood glucose levels, intensive lowering of blood pressure, and treatment of cholesterol with two drugs (a fibrate and a statin). Usually, elevated cholesterol is treated with a statin, a drug that prevents certain enzymes from synthesizing cholesterol in the blood. On the other hand, a fibrate is a drug which prevents the liver from producing triglycerides. With over 10,000 adults participating in the trial between the ages of 40 and 79 and living with diabetes for an average of 10 years, the study focused on individuals who already had risk factors for cardiovascular events such as high blood pressure/cholesterol/blood sugar levels, smoking, or obesity.

Amazingly, intensively lowering blood glucose levels (achieving an A1C of less than 6%) did not result in a reduced incidence of cardiovascular disease! However, on the microvascular level (eyes, kidneys, and nerves), scores in visual sharpness, kidney function, and nerve function were better than those who were treated in the standard group (aiming for an A1C of 7-7.9%). Participants who intensively lowered their blood glucose and treated their cholesterol were shown to have a slower progression of diabetes-related retinopathy than those in the standard treatment group.

Participants treated aggressively to lower their blood pressure did not see a related lowering in their risk for retinopathy. Intensive lowering of blood pressure to levels of less than 120 mm Hg, compared to standard treatment aiming for less than 140 mm Hg, did find a 41% reduction in stroke incidences.

When it came to cholesterol-lowering therapy, men and women responded differently. Although men experienced a 20% reduction in cardiovascular events (only if they had elevated triglyceride levels combined with low “good” (HDL) cholesterol levels), women saw an increase in cardiovascular events! According to scientists though, the women’s study data was not as statistically significant and must be reviewed further.

June 27, 2010- Morning

Imagine an indoor football field with high ceilings and filled with hundreds of temporary structures (some even two-story!) where thousands of medical or diabetes-related company representatives await your conversation. I slipped into the Exhibition Hall as soon as it opened this morning and soon found myself three hours later with only about a third of the total ground covered.

Armed with bags and goodies picked up at tables along the way, my father and I spent time talking with some of the most interesting people involved in developing cutting edge diabetes products and individuals and research. While there are plenty of tables hawking enzymes and antibodies for diabetes research to scientists, many other tables offered up a multitude of products and services, ranging from antimicrobial socks and artificial sweeteners to continuous glucose monitoring devices and free 5-minute A1C tests!

After a brief lunch break, I returned to the large hall and made the rest of my rounds to the various booths. I customized my own diabetes medical posters with a nifty software program, tested out some seriously tasty frozen diabetes-friendly low-sugar shakes, and even petted a cat-sized rabbit! While the rabbit may or may not have been affected by diabetes (you never know; carrots are pretty high glycemic!), I encountered people who reminded me over and over about the benefits of being a part of the “diabetes club.” As one woman put it, “You may not want to join the club, but once you’re in, you’re in…and you love it!”

Every pump similar to the one I have makes my heart flutter as I restrain myself from running up, introducing myself, and complimenting them on the fine machinery by their side.

Truly, I have never before appreciated how global the diabetes pandemic is. I have never seen before so many people from different countries- Indonesia, Ecuador, Belgium, etc.- who all care so much about ending diabetes and opening wide its intricacies in terms of how it affects our anatomy and physiology. Over the past two days alone I have for the first time almost been brought to tears by some of the stories and encounters I have had.

• A young child broke his insulin pump and refused to eat dinner because the shots and checks hurt just too bad for him to bear.
• A mother so excited about the diabetes conferences that she couldn’t wait to introduce us to all of her friends, so that we would feel just as included in the diabetes family as those she has attended with for many years.
• A doctor pleading with me to get through medical school and visit foreign countries like his own, where patients have to wait months, even years, to have a diabetes appointment or even receive proper medical supplies.

Sometimes I think that I understand and appreciate things that I have yet to actually experience. Yet times like these- real life happenings- prove to me over and over again that I have only undergone but a fraction of my life, and cannot even begin to understand all that has yet to unravel before me.

June 25, 2010- Evening

Hey Everyone! I just finished Day 1 of the American Diabetes Association’s Scientific Sessions. My last session of the day was about the implications of health care reform on the care and prevention of diabetes.      

Health care reform expands coverage, first and foremost, for the under-insured. Its requirements include no denial of coverage for pre-existing conditions, no lifetime or unreasonable annual limits on coverage, establishes state health benefit exchanges, sets standards for prevention and wellness benefits, creates a national diabetes prevention program.

Shereen Arent, JD, works for the American Diabetes Association as the Executive Vice President in Government Affairs and Advocacy Division. As a leader in the push for health care reform, she was elated (as were millions of other Americans) when three months and three days ago, the Affordable Care Act was passed into law. Before this, people with diabetes were prevented from getting insurance due to pre-existing conditions, were unable to properly managing their diabetes due to the high costs of medication, and were left with exorbitant premiums based on their chronic illness.

The Affordable Care Act will be enacted in stages, beginning this year. By 2014, no exclusions will be made to those in need of health insurance. Those who need coverage will receive it through the government (Medicare, Medicaid) or private market (individual, insured group, self-insured group). A list of requirements to be covered, called The “Essential Benefits Package” includes diabetes prescriptions, eye care, podiatric services, and other services.

While the health reform bill sounds practically perfect, there are some “sharks,” as Shereen says. For example, while discrimination has ended when it comes to the price of premiums based on pre-existing condition, workplace wellness programs may “swallow” this rule. That is, in an employer-decided workplace wellness program, an employer may determine an increase in health insurance costs simply because an employee does not meet certain guidelines. This can become outrageous as employers have the power to discriminate based on subjective standards.

Lastly, several changes are coming for the Medicare coverage program. There are many new free preventative services, free annual wellness visits and personalized prevention plans, and newly limited out-of-pocket drug costs. Medicare will also act as a laboratory for trying new systems and methods of care administration.

After her presentation, Shereen answered a few questions. The first wondered if there are going to be policies in the future to limit the use of sugary or unhealthy products. Shereen answered that there has been a movement to re-vamp vending machines and remove the high-sugar drinks and fatty foods from them. Currently, the Association has standards for the school lunch, but not what is being sold in the ala carte line or school snack shops. Shereen explained that the Association is  focusing particularly on youth and menu labeling so young people know what they are consuming and how it affects them.

I hope you all are enjoying the blog posts! Feel free to comment over on the National Youth Advocate Facebook page!

June 25, 2010- Afternoon

The room was buzzing before the Advocacy in Action session started here at the Community Volunteer Leadership Conference. It’s really great to be around other Diabetes Advocates!

George Huntley, Past Chair of the Board of Directors of the American Diabetes Association, updated the crowd on the newly passed health care reform bill. “Without insurance and before health reform,” he said, “we had a system that would pay for an amputation due to complications from diabetes. Yet we didn’t have a system that made it possible for those with chronic illnesses such as diabetes to even afford insulin.”

The health reform bill promises several important and life-altering things for people like us, living with diabetes:

• People with diabetes cannot be turned down for coverage or have it taken away when they need it most
• Limits will be placed on out-of-pocket costs for all, plus an array of help for low and moderate-income people with diabetes
• New programs will be implemented to prevent diabetes

One thing that I thought was especially interesting was that chain restaurants will be required nationwide to post caloric information on menus and boards. Carbohydrate content and additional information must also be available upon request, which will certainly be helpful for people with diabetes that are counting carbohydrates! Hopefully, this translates into the creation of healthier options from fast food chains and restaurants.

Next, a courageous man named Jeff Kapche told us how he’s dealt with discrimination due to his diabetes. Unbelievably, he was discriminated against not only when he tried to get a job in law enforcement, but then again when he applied to be a Special Agent for the FBI! He was told that even with successful diabetes management, he did not deserve protection from discrimination from the Americans with Disabilities Act! With help from the Association’s volunteer legal “dream team’ including doctors and lawyers, he fought the state and proved to everyone that diabetes is never a reason to give up on your goals. Jeff and his legal team received the 2010 Public Policy Leadership Award during the session. Seriously, what inspiration!

The Safe at School campaign is yet another example of where the American Diabetes Association is hard at work to maintain an atmosphere of safety and fairness for children with diabetes in schools. Because diabetes doesn’t take recess (even though I wish it would!), the Association is committed to making sure very child is medically safe at school and has the same educational opportunities as a child without diabetes!

More to come from Orlando!

June 25, 2010- Morning

Hey Everyone! Amy Johnson, National Youth Advocate, here. I’m in Orlando and super excited to be at the American Diabetes Association’s Community Volunteer Leadership Conference! It’s great to be here with so many of the Association’s passionate volunteers.

The first item on this morning’s agenda was a general session covering the Association’s scientific, medical, and research activities. In a nutshell, the purpose of the Scientific and Medical Division of the Association is to provide support and oversight of the Association’s research funding; standards of diabetes care, screening, and prevention; and legal advocacy/legislative action.

Richard Bergenstal, MD, the President of the Medicine and at the American Diabetes Association, presented several facts and highlights about the Scientific Sessions:
 
• Sci Sessions is the 17th largest medical meeting in the United States
• 398 speakers have been invited
• Average attendance is 13,000-20,000 people
• The majority of those in attendance are MDs, DOs, RNs, and PhDs
• People come from over 50 countries to attend

Next, Betsy Seaquist, MD, presented information about the Association’s research efforts. The ADA’s Research Division aims chiefly to increase the funding of diabetes research whether it’s through clinical research, community based research or translational studies. Increases in funding support the development of new studies, ideas, and pathways to improve diabetes treatment options and, potentially, find a cure. That’s the ultimate in stopping diabetes!  Since 1980, the Association has funded over $500 million in research, with over 4,000 projects!

More posts to come from Orlando!

June 18, 2010

Hey Everyone! Hope that you all are having a great summer! I’m gearing up for 10 days in Orlando, FL and am excited to share just a sneak peek of what I’ll be doing while I’m there. I’ll be attending the Association’s Community Volunteer Leadership Conference and Scientific Sessions, the world's largest diabetes meeting!

I’ll also be attending the Children with Diabetes Friends for Life International Conference from June 29-July 4. Where can you join an international group of clinicians, researchers, physicians, adults, children, and families affected by diabetes to learn the most current information on diabetes care? Between meeting people who conquer diabetes daily, from the first person to climb the highest peak on every continent (Will Cross) to Miss America 1999 (Nicole Johnson), and getting to speak about some of the work I’ve done as the National Youth Advocate, it should be a really great time.

I look forward to sharing with all of you via frequent blog posts, pictures, interviews, and perhaps even some video on the Facebook page!

Stay connected, ask questions, and get involved!

March 16, 2010 

This past weekend I attended the bi-annual National Committee Meetings in Washington, D. C. I attended both the Advocacy Committee and Youth Strategies Committee meetings throughout the day, and was pleased to see how passionate everyone was about making the lives of all those affected by diabetes better in every way. The meetings were a melting pot of ideas and strategies from across the country.

Sitting at the U-shaped tables in the meeting areas made me feel as though I was sitting among a group of "diabetes titans", who are not only highly involved in changing the landscape of this disease on a national scale, but are role models for everyone in their community as advocates, volunteers, and people affected by diabetes.

Much of the discussion in the Advocacy meeting concerned how to go about more efficiently teaching advocates how to bring about positive changes in their community. We concluded that advocacy is not necessarily “learned” best by jumping in head-first and immediately trying to meet with legislators or lobby for certain bills. Rather, we should focus on building self-advocacy skills first to develop confidence which will allow advocates to do even bigger and better things!

January 25, 2010

Today I met with Tom Bowser, President and CEO of Blue Cross/Blue Shield Kansas City, as well as a few members of his staff regarding future continued support for American Diabetes Association events and programs, such as the Tour de Cure or Step Out: Walk to Fight Diabetes.
Tom asked some great questions that provoked deeper thinking on my part. “Other than raising money, what do you tell kids to do to help the American Diabetes Association?” particularly stuck out to me.

We Can Do More

While I did answer the question, immediately after I left I began brainstorming even more. I realized that youth in general can do many things for the Association to help the fight against diabetes, and to help themselves! Several broad categories include:

1. Educate yourself. The more you know, the better you will field questions related to your diabetes. The higher quality of information you have equals improved treatment on your behalf.
2. Volunteer anywhere. A volunteer performs a service willingly and without payment. This leaves millions of opportunities for you to help out! You can do anything from making diabetes alert bracelets to cooking up healthy meals to raising money and donating it to the Association.
3. Take action. You are never too young or too small to make beneficial changes in your community. Grassroots energy is where everything begins! Become involved with your local government:
1. Get your student council to host a diabetes event
2. Contact your local representative and tell him or her about the latest issue relevant to the diabetes community 
3. Interview people about issues or bills in order to make that positive change happen.
   

February 27, 2010

Tonight was the 4th annual American Diabetes Association Kansas City Hoops and Sneakers Gala! More than 500 people RSVP'd for the live and silent auctions, dinner, awards, dancing, and the chance to meet lots of sports celebrities! Of course, I enjoyed the opportunity to dress up with my hoop earrings and address the crowd to let them know about my role as the 2010 National Youth Advocate.

The event was a great success, and I’m sure this will be verified when the numbers come together at the next board meeting of our Association chapter.

Question of the Day

Of the diabetes events you attend, which is your favorite and why?

You can post your answers up on the and view others' answers, as well. Perhaps you will find a new idea for an event in your community, too!