Message Monday

Laddie_Head SquareWelcome to the 7th year of Diabetes Blog Week. This is my 3rd time participating and I swore I wasn’t going to do it again this year. Why? Because I get totally burned out by writing blogposts every day and trying to read the posts of 100+ participants. Somehow I am incapable of staying low-key during the week and always overdo it. So why am I here? Because Diabetes Blog Week links me to voices of diabetes from all over the world. At the end of the week I will feel exhilarated after meeting new bloggers and catching up with those whom I already “know”. I’ll learn more about myself and my diabetes as I tackle the topic list. On Friday I will be proud that once again I have survived Diabetes Blog Week! As always, thanks to Karen Graffeo of Bitter-Sweet™ for organizing everything.

Today’s Topic:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

When I started my blog in 2013, I wrote:

“The DOC (Diabetes Online Community) has become a family to me…. I think there is room for my voice in the DOC and I hope that I can help and inspire others  in the way that I have been helped and inspired by others…. I hope to use my blog to chronicle my journey through life with diabetes. Many of my posts will be reflections on the last 36 years as well as my opinions on current issues.”Blah Blah Blah2_DBW

That is typical blah for mission statements and I could easily write the same words again today. The main change is that it’s now been almost 40 years of diabetes.

I wrote one sentence in my first blogpost that seemed innocent at the time. It has morphed into one of the main reasons I continue to blog.

“The medical system in the United States is changing and I really wonder what the next years will bring for those of us with diabetes.”

Talk about the understatement of the year. I predicted that the Affordable Care Act (ACA) would bring me lower premiums and worse coverage. Wrong! I still have good coverage for diabetes expenses, but my premiums have almost doubled and they were expensive to begin with. Many DOC friends have fared far worse with huge increases in premiums and deductibles along with difficulty obtaining needed supplies and medications. Insulin prices have soared and for each insurance company mandating Humalog, there is another one requiring Novolog. The recent UnitedHealthCare mandate for Medtronic pumps is symptomatic of a broken healthcare system that increasingly devalues patients and results in huge profits for insurance companies, pharmaceutical/durable medical companies, and middleman wholesalers.

I also mentioned Medicare in my first blogpost:

“And before I know it, I will be on Medicare with a new set of rules that will save me lots of money in some areas, but will try to dictate that I live with 3 test strips a day and throw away my CGM because it is not proven technology.”

I am now counting down the months until Medicare. I am proud of my gray hair and feel strongly that I would like Test Guess and Go to become an information and advocacy resource for seniors with Type 1 diabetes. CGM coverage is one of the most visible battles but it may be just the tip of the iceberg with programs like Competitive Bidding threatening choice and access to needed supplies.

In three years of blogging I have been learning how to advocate. I know that I am a better writer than speaker. I know that I prefer one-on-ones to larger advocacy forums, but I am trying to grow. Regardless of where my senior years take me, Type 1 diabetes will be there and there is no reason to fight that. I don’t know how long I will continue to blog, but I’m not ready to quit yet.


To read other Diabetes Blog Week posts on this topic, click here.

Countdown to Medicare with Type 1 Diabetes: 11 Months / Options for Testing Supplies

Laddie_Head Square11 months from now I will be on Medicare. April 2017. My aim is to write a monthly blogpost about what I am learning as I get closer to that date. Last month I wrote a general overview of my Medicare thoughts. This month I want to talk about testing supplies and Medicare’s national mail-order program for diabetes testing supplies.

Background:  In July 2013 Medicare instituted a national mail-order program for diabetes testing supplies that requires all beneficiaries to use a Medicare-contracted supplier for home-delivery of testing supplies. (Note: this applies to original Medicare only and not to Advantage plans. Also note that it is possible to buy testing supplies locally instead of through the mail-order program.) Part of the Competitive Bidding Program (CBP), this program was launched in nine test markets in 2011. According to a 2012 Centers for Medicare & Medicaid Services (CMS) update report:

 “CMS real-time claims monitoring has found no disruption in access to needed supplies for Medicare beneficiaries. Moreover, there have been no negative health care consequences to beneficiaries as a result of competitive bidding.”

The Government Accountability Office (GAO) challenged the safety monitoring methods used by CMS and questioned whether beneficiaries were receiving supplies on time and whether adverse health outcomes were resulting from problems accessing testing supplies. Adding to the GAO analysis, the National Minority Quality Forum worked with leading endocrinologists to analyze the data and released an online report in March, 2016 followed by a print article in Diabetes Care, the professional journal of the American Diabetes Association. This analysis indicated that:

“the Competitive Bidding Program disrupted beneficiaries’ ability to access diabetes testing supplies, and this disruption was associated with an increase in mortality, higher hospitalization rates and inpatient costs.”

This article received a lot of attention in the diabetes online community and prompted an initiative by DPAC (Diabetes Patient Advocacy Coalition) urging Americans to contact their elected representatives to #SuspendBidding. Click here to learn more about DPAC’s analysis of the problem and to contact your representatives.

My Perspective:  Rather than stress about my ability to get high-quality testing supplies once I get to Medicare, I decided to contact some experts: people I know with Type 1 diabetes who are on Medicare. I communicated with eleven seniors by email, phone, and/or in person. Some live in Minnesota and others in Arizona.

In general each T1 senior is getting diabetes testing supplies on a timely basis and is able to get their brand-of-choice. Several people buy test strips at local Medicare-approved pharmacies while others purchase them through mail-order Medicare suppliers. Although their Medicare experiences are not without occasional glitches, most of my contacts are satisfied with their ability to obtain testing supplies through Medicare.

Some of the comments I received are:

“It is not as fretful as you may think although some resources are better than others. Type 2’s have a harder time. At the beginning of your Medicare enrollment there may be some stumbling blocks until the required documentation is submitted appropriately by each member of your health care team”

“I am getting all the supplies I need of my choice, excluding CGM.”

“Once I couldn’t get the test strips I use, but it was a temporary thing. They were not able to get them from the supplier…. I get my supplies in a timely matter.”

“I have been on Medicare (with a supplement) for the last 8 years. I haven’t had any trouble with getting pump supplies or strips. My doctor is very cooperative and prescribes what I need.”

“I have never had a problem getting my test strips.”

But all is not perfect. One friend was recently forced to change strip brands, but she was able to select another “name-brand” meter and strip. Another friend has continued to work past age 65 in order to continue receiving CGM coverage.

A few more comments:

“They limit me to 5/day because that’s all I have shown on my logs…. I don’t think my endo has been any help at all.”

“I haven’t had any trouble with Medicare, but I have read about many others who have had trouble.”

“I find the whole medical insurance business so confusing. I have stacks of documents that come in the mail that make no sense.”

Summary:  I am encouraged by the feedback I received from my Medicare T1 friends. At the same time I know that these seniors are a unique subset of Medicare beneficiaries with Type 1 diabetes. They are empowered, well-educated, and reasonably financially-secure. Many of them have had Type 1 for more than 50 years and are used to navigating the US healthcare system to fight for what they need.

I plan to enter Medicare with a stockpile of testing supplies and know that I will need to get my ducks in a row to have the transition go smoothly. I need to remember that there will be bumps in the road along with a definite learning curve. I understand that new rounds of competitive bidding will continue to take place and just because things are fine today doesn’t mean that they will be fine tomorrow.

If you are on Medicare, I’d be interested in hearing about your experiences obtaining testing supplies and any advice you might have navigating Medicare. I have a lot to learn for sure.