DPAC Champions

Guest Post: Stephen Shaul’s Reflections on DPAC’s Policy Training Meeting and Hill Day

Last week was a capital week on Capitol Hill.  Advocates joined again with Diabetes Patient Advocacy Coalition (DPAC) for another Policy Training Meeting, culminating in a stellar Hill Day advocating before Congressional staffers.

On April 30 and May 1, over 20 advocates convened to learn the latest on important diabetes issues and how to effectively bring our own stories to bear when lobbying lawmakers.  We learned a lot about the issues we were there to talk about, and a lot about how to talk about them.


What Did We Talk About?


What did we talk about?  Affordable access to insulin, of course.  It’s the hot diabetes issue right now, and we wanted to make sure that our House Representatives and Senators didn’t forget that people with diabetes need relief from the high cost of insulin now.  

We also talked about H.R. 1840 (https://www.congress.gov/bill/116th-congress/house-bill/1840/text?) and S. 814 (https://www.congress.gov/bill/116th-congress/senate-bill/814/text?), the Expanding Access to Diabetes Self-Management Training Act of 2019.  This one was introduced late in the 115th Congress, and it just didn’t have time to get through before the election.  Now it’s back for the 116th Congress.  

H.R. 1840 and S. 814 aim to remove some of the barriers in place that are keeping Medicare recipients from learning how to better manage their diabetes today, next year, and for years after that.  There’s a lot to like in this bill, and I encourage you to use the links above to find out if your Representative and your Senators have cosigned on this important legislation. If they haven’t cosigned yet, use this link (http://diabetespac.org/act-now/federal/ask-your-representative-to-support-diabetes-self-management-training-legislation/) to go to the DPAC website and ask them to put their support behind these bills today.


Your Voice Matters


Now, let me take a moment and talk to you about how important your voice is when it comes to affordable access to insulin, and a better path toward self-management training for seniors in America.  Hint: it’s super-important.

Maybe you’ve seen the tweets and Facebook posts from advocates who were in Washington last week, and thought, “I dunno, all that advocating stuff might be over my head”.  But it’s not!  
There are over 40 people who have taken part in DPAC Policy Training Meetings and Hill Days in the past seven months, and most of us weren’t too sure we could handle it either.  But we received great training from Christel Marchand Aprigliano, CEO of Diabetes Patient Advocacy Coalition; Leyla Mansour-Cole, Policy Director of DPAC; and DPAC’s Vice President of the Board, Stewart Perry.  We also received valuable lessons from Diabetes Educator and Pharmacist extraordinaire Jasmine Gonzalvo, and from Logan Hoover, Senior Legislative Assistant to Representative Tom Reed, Chair of the Congressional Diabetes Caucus.

They were able to give us the knowledge that we needed to be able to speak effectively, and the confidence to share the passion we all have for improving the lives of people living with diabetes wherever they live in the USA.

In short, you can do this, and I hope that when the next DPAC Policy Training Meeting is announced, you sign up to be a DPAC Champion too.  We need your voice. Your voice is worthy.

Do it for yourself.  Do it for a family member.  Do it because you pay taxes and they work for you.  Do it for all of the people who can’t go to Washington but will benefit from your advocacy and passion.  When you do, you will leave with a wealth of knowledge and a renewed sense that being a DPAC Champion makes a crucial difference for everyone affected by diabetes.

 

About
Stephen Shaul

Stephen Shaul has been living with Type 1 diabetes since 1991. He writes a popular blog called “Happy Medium,” is the founder of the Diabetes Athletes medal program, was a facilitator for The Diabetes UnConference, has spoken at FDA, and has been a longtime advocate for the Diabetes Patient Advocacy Coalition.  He’s currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where he is the co-chair of the Diabetes committee. In addition, he’s part of the 2018 Reader Panel at Diabetes Forecast magazine. He lives in Baltimore with his awesome wife, Maureen. 

In summary, Stephen rocks. 

Why I Advocate: Vikki Riggle

Why I Advocate: Vickie Riggle

I’m Vikki Riggle, a Type 1 diabetic diagnosed late in life, at age 41.  People are quick to tell me that I’m mistaken, that Type 1 is “juvenile” diabetes so I must have the other, adult-onset Type 2.  “Nope,” I tell them, “I’m a Type 1.” Then I explain how I know this to be true.

About a year ago, I even had to prove my Type 1-ness to Medicare to get them to pay for the supplies I’ve been using for 25 years.

I also have to see my physician at least every 90 days to keep my Medicare benefits active. My physician and I try hard to laugh about Medicare and their onerous, unnecessary requirements but honestly, it’s a waste of my time and their money.  I’m fond of telling people that I find dealing with Medicare frustrating and often confusing even though I hold a Masters degree and have 40+ years of administrative experience. What, I ask these people, do less savvy people do? I suspect many of them don’t do well at all. I suspect they don’t use the most up-to-date technology.  I suspect they don’t have access to diabetes education. I worry they may not even know about the various insulin therapies or the biologicals that now exist. I wonder how they manage to pay for their care if they live on a limited income. I envision the elderly, struggling to take care of themselves and living lives harder than they need to be living.  

This is what brings me to advocacy.  I am in constant educator mode. When I encounter a person who will listen, I tell them what life with diabetes is really like.  I wear my medical jewelry and technology with pride, hoping someone will ask me about it. In the olden days, when I was still on the needle, I never hid to take my mealtime injections. I checked my sugar and injected my medicine, discretely, right at the table.  Once in a while I would encounter a needle phobic person who invariably would say, “I could never do that!” My answer was always the same: “Oh, I don’t know. If it was the only way you had to stay alive, I bet you could learn.”

Now that you know I’m not a shrinking violet, I can tell you that my days of advocacy go all the way back to high school.  The causes I’m actively involved in may change somewhat from time to time, but my passion to educate never fades. Things are easier now, with email and social media instead of hand-written letters and phone calls.  It’s easier to learn who to contact about an issue. It’s easier to find the CEO of a company and to reach that person. It’s easier to do the research to create a position statement. Unfortunately, it’s not easier to impact people’s opinions.  

Sometimes, I think it’s harder in the divisive world we live in, but it’s just as important as it ever was. So I keep on keeping on. I want to be the bee in the bonnet, the stone in the shoe. I want to get the attention of people who think they don’t care and I hope, really, truly hope, that I can find the magic words to have an impact on that person’s attitude.  This is why I advocate, to bring the realities of life into the view of those who have the power to do something about it. Won’t you join me?

 

Why I Advocate: Lucy Trankina

Why I Advocate: Lucy Trankina

As a person with type 1 diabetes for almost 11 years, I have been advocating for myself for some time now. It is so reassuring to know DPAC is there for me too. I love the work DPAC does and want to help others like myself. Diabetes is hard enough without constantly having to fight for your rights. If I can help make this path any smoother for others and myself, I am there. Because, as I learned recently on my honeymoon, you can’t take a vacation from diabetes.

I was diagnosed with Type 1 Diabetes when I was 15 years old. It’s a pretty scary diagnosis for any age, but thankfully my doctor put me on an insulin pump one month after I left the hospital. It made the transition a lot easier and has allowed me to live a relatively normal life. I have traveled abroad, went to college, and led a very fulfilling career in nonprofit.

In June of 2018, I got married to my college boyfriend, Tyler, and we went on our honeymoon to Jamaica. Plans for our trip had been in the works for months. After making a million little decisions about the wedding, we were looking forward to spending quality time together and not having to think.

We stepped off the plane on a Sunday night and explored the resort. We couldn’t wait for all the fun things we were going to do that week, like Dunns River Falls waterfall hike, a rum distillery tour, and Luminous Lagoon bio luminous swim experience. We had a really relaxing beach day on Monday, jumping through the ocean waves without a care in the world. My sore feet were really happy to get a break from standing. It was a really great day and we turned in early to rest up for the remainder of our big week.

I had no idea how much I was going to need the rest. Tuesday morning, we stayed dry, people watching and listening to the ocean before heading to Dunn’s River Falls. I don’t know what possessed me to do this but I brought with me my CGM and pump PDM remotes. The waterfall was in full force and we were fully submerged. I didn’t realize the full extent of how wet we were going to get but we got soaked! Which meant all of my equipment got soaked. It turns out the PDM remote does not enjoy taking baths. It shut down, ensuring a panic attack by me. A lovely Jamaican woman had to hold me and calm me down. I felt out of control and like I was going to die.

Shots and I have never got along. My doctor put me on a pump so fast I really never had an opportunity to feel comfortable with them. Shots and using an insulin pump require completely different mindsets. Dealing with this whole different mindset of how to keep me healthy and alive is stressful enough in the most comfortable circumstances. On vacation, in a foreign country, adds a whole other level of stress. I am not a trained physician or nurse and do not trust myself enough to know what I am doing. But my only choice was to suck up my fear and do what I needed to do in order to survive the week. I was very cautious about what I ate and swimming. I was so worried it was really hard to enjoy all the activities we had planned.

I clearly chose the right person though, because Tyler was so helpful. He gave me shots, helped monitor my blood sugar, and most importantly kept my spirits up. He kept me going when I wanted to quit. He reminded me how special I was when all I could see was how happy the non-diabetic people on the beach were. He got me through this ordeal and I am very thankful he will be there to support me through all the ups and downs of diabetes to come.

There are a lot of highs and lows that come along with diabetes – and I am not just referring to blood sugars on the meter. There is a large emotional toll it can take on a person. Most days, I am grateful for the lessons I have learned through this adversary. It has taught me to recognize the important things in life and how to let go of the little things. I advocate because I want people to know what diabetics experience on a day to day basis. Every single day we prepare, count carbs, calculate and inject.

You can’t take a vacation from diabetes. It comes with you across the world. To beaches, ski slopes, cruises, and remote jungle villages. You can be as prepared as possible but there is always a chance something can go wrong. Ultimately, I hope one day this won’t be a reality for me or anyone else. No one else will have to miss out on their honeymoon or any other joyous life experiences. Until then, I will continue to do the work!

Why I Advocate: Laurel Garrison

Why I Advocate: Laurel Garrison

I lived to prevent other people from getting sick.  Then my toddler was diagnosed with a totally unpreventable, incurable illness. And my life was forever changed.

It was 2015.  I was enjoying a successful career as an epidemiologist at the Centers for Disease Control and Prevention (CDC).  My days were a constant barrage of emergency conference calls and last-minute trips to fight the latest outbreak. Twelve-hour days were more the norm than the exception, and I’d often leave the house before my two children awoke and return after they’d gone to sleep.  My husband performed more than his fair share of the household duties.

All the while, my preschooler, and toddler were happy, healthy, and surrounded by people who loved them.  I did all the right things. I took prenatal vitamins (with Omega-3s!), bought organic food (and sheets, and clothes!), got them vaccinated (on time!), and bought all the internet’s best learning toys.

Photo by Sarah Green Photography

Then one night in December my 16-month-old baby girl was having trouble breathing.  I had taken her to the pediatrician twice that day, and when my after-hours calls went unreturned I drove her to the emergency department.  Everyone initially thought she had a respiratory virus. It was the winter after all. I was in shock when the doctor told me she had Type 1 diabetes.

We spent 24 hours in ICU and another three days in the hospital learning how to count carbs, calculate insulin dosages, and prick her finger to check her blood sugar.  I remember the first time the nurse asked me if I wanted to give her a shot, and “no” was not an option. We came home two days before Christmas. I realized then that our lives would never be the same.  Not just her life, but ALL of our lives. I couldn’t travel and put in all of those hours at work anymore. I needed to make her and my family my priority.

I threw myself into taking care of my daughter and the rest of my family.  I joined diabetes support groups. I went to conferences and diabetes family camp and fundraisers for diabetes research.  I poured over papers touting the latest in diabetes advancements.

EVERYTHING CHANGED.  

There were big changes, like putting my career on hold to become a stay-at-home mom.  Or moving to another state to be closer to family and a good children’s hospital. There were sobering realities, for example, my daughter couldn’t go to preschool or summer day camps because they wouldn’t take her.  Normal everyday things changed too. We have to measure her food and have three well-balanced meals at the same time every day, always. We never get a break; she is with us 24/7 because we are the only ones who can administer insulin.  It’s impacted us financially as we went from a two-income household to one and now have the added cost of insulin and all the many other diabetes supplies she needs.  

The thing is, I had devoted my life to disease prevention, but there is absolutely NOTHING that anyone can do to prevent Type 1 diabetes.  Yet. And the incidence of the disease is increasing at an epidemic pace.

So until we can prevent it, I can help by giving diabetes a face and a story so people care.

I’ll tell our legislators about the everyday challenges so they can make informed decisions. I want my daughter to have the freedom to choose what she wants to do with her future without having to worry about keeping an affordable insurance plan.  I will be a champion for healthcare bills that give scientists the grants they need to do important research that will improve the lives of people living with diabetes. Maybe even one day that research will be the key to preventing it from happening to anyone else.