Guest Posts

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A Patient’s Perspective on Non-Medical Switching

Who’s in charge- your doctor

or your insurance company?

These are strange times, when we have to think about insurance companies and medical suppliers like they’re our doctors.

No, they aren’t. But don’t tell the insurers and suppliers that tend to act this way.

Using strong-arm language like “not covered” and “preferred brand,” they try to force our hand. And then they take it to the next level by disregarding doctors’ decisions and ignoring prescriptions, weaponizing phrases like “therapeutically equivalent” and urging us to jeopardize our health with a treat-to- fail step-therapy regime before even considering what our doctors have already prescribed.

This is the world of Non-Medical Switching, where payers justify their decisions based on cost more than listening to the medical advice of our healthcare professionals.

I’ve experienced this many times, and it’s an issue my medical care team and I are always frustrated with. There are four examples that come to mind, from recent years:

CGM Type: That time at the start of a year with a new insurance company, when I was refilling a Dexcom CGM sensor order and the company told me that they would rather not approve this CGM because I happened to use a Medtronic insulin pump – and so, that brand of CGM would be a better fit for me. (Result: It took insistence with an insurance supervisor to make it clear my doc and I knew what was best, especially given I’d been on Dexcom for years).Three different insulin pens, two with their needles exposed, sit on a white platform in front of a pink background

Lantus to Tresiba: When the new basal insulin Tresiba came out from Novo, I studied a lot of the data and patient reported outcomes (PRO) that showed it might be better for me than Sanofi’s Lantus. In particular, the fact that Tresiba could last 42 hours rather than the 24 of Lantus, and I may not have to split my total basal dose into twice-a- day to see the most effectiveness. Their argument: That Lantus was “therapeutically equivalent” to Tresiba since they’re both basal insulins. And so before they’d cover Tresiba, I’d have to show Lantus didn’t work for 30 days, and then competing Levemir also didn’t work for 30 days. (Result: My doctor and I reiterated that I’d been on Lantus for months, and that this “step-therapy” had already been met – Lantus didn’t work as evidenced by my higher A1C and glycemic variability, and if my insurer described Lantus and Levemir as “therapecally equivalent then they couldn’t very well argue I’d have to waste another 30 days trying that insulin. We ‘won’ after firing off an appeal letter to the insurer).

Humalog to Novolog: Pretty much the same situation as above, but this time I decided that it wasn’t worth the fight to try for Humalog. I’d never actually tried Novolog before, and despite reports out there about insulin differences and allergies, there was no guarantee I’d experience that. (Result: So, I opted to switch to Novolog pens and in the end saw no difference from what I had while using the other brand. Of course, when looking at the actual cost breakdown on the Explanation of Benefits, there was hardly a difference in overall price tag between the two brands – even though I’d be paying a $40 difference in copays.)

A businessman holds a sign that says "No"

Afrezza inhaled insulin: That time my doctor and I decided inhaled insulin would be the best treatment, instead of just injected insulin that wasn’t doing the job. We again had to hear about step-therapy, and interestingly despite my past use of Humalog and Novolog, my Afrezza still wasn’t initially approved. We wrote a letter contending that we had met the step-therapy, and that Afrezza was medically necessarily to prevent my severe hypos and glycemic variability. It took two rounds of letters, but we once again prevailed. (Here is my appeal letter).

Countless people who live with diabetes and so many other health conditions experience this type of short-sighted Non-Medical Switching every day.

My endocrinologist has told me stories of others experiencing this NMS, who simply don’t fight and accept whatever the preferred payer brand is. And that months later on a return office visit, my endo learns that they weren’t using the prescribed medication.

He has often wondered aloud, “Why bother having a medical license and even writing
prescriptions, when they’re denied and second-guessed 99% of the time?

I’d also argue it’s criminal, in that it equates to practicing medicine without a license. The individuals making these decisions may not even have an M.D. behind their name. Sure, there’s probably a doctor on the letterhead somewhere, but it’s an actual nurse or even a lower health insurance employee actually approving or denying my insurance claim.

A hand holding a stamp hovers over a document. The document is stamped 'Approved' in red letters.

Of course, I’m lucky.

See, I know that payers are in this for cost. And I know that you don’t have to take “No” for an answer. Even when insurers, Pharmacy Benefit Managers, and third-party distributors try to force a change, that’s not the way it has to be. Patients have power and can fight back, sometimes with a little extra effort and at other times with more extensive appeals for coverage.

None of this is right and I fear it may get worse as this becomes more mainstream practice. I’m hopeful that national and state-specific advocacy and lobbying actions can move the needle, but in the meantime those of us on the patient and provider side are left dealing with these issues in the trenches.

What You Can Do to Help Stop Non-Medical Switching

I think both patients and healthcare professionals should be alarmed, and I’d encourage everyone to check out the #MyMedsMyChoice and #KeepMyRx sites to learn more and take action.

Children with Diabetes (CwD) is a 501(c)(3) non-profit organization that provides education and support to individuals and families living with type 1 diabetes. The organization has recently established a website (www.MyMedsMyChoice.org) to gather basic information from all people with diabetes (or their caregivers) and healthcare professionals about their experiences with non-medical switching. The website links to two short surveys: Patient/Caregiver and Healthcare Professional.

Click here to take the survey and help gather this important data!

The My Meds, My Choice Logo on a blue background.

The Diabetes Patient Advocacy Coalition (DPAC) supports this initiative and urges you to go to the website and complete the short Patient/Caregiver or Healthcare Professional survey. DPAC’s statement on non-medical switching can be found here.


A photo of Michael HoskinsMichael Hoskins is associate editor at DiabetesMine. Diagnosed with type 1 at age 5 back in 1984, Mike’s the son of a type 1 mom who was diagnosed at the same young age in 1958. He’s been an insulin pumper since his final year of college in 2001, graduating not only from two shots a day but also with a bachelor’s degree in journalism from Oakland University. A writer for most of his life, journalism has been a focus since middle school and has taken Mike to a variety of weekly, daily and specialty newspapers. Migrated in January 2004 from the Detroit, MI, suburbs to the Indianapolis, IN, area where he worked at a statewide legal newspaper for six years, just before finding the Diabetes Online Community and re-energizing his own local advocacy and personal diabetes writing style. Loves spending time with his wife Suzi and their black lab Riley, while also indulging his history buff tendencies and exploring family ancestry in his free time.

 


To learn more about non-medical switching and how it hurts people with diabetes, watch this video:

 

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Forced Non-Medical Switching and Why It’s Hurting People with Diabetes

Forced Non-Medical Switching:

Practicing Medicine Without A License

Health insurers are forcing many people with diabetes to switch from their current medication to another for non-medical reasons. This practice is referred to as “forced non-medical switching”. As a result, many Americans with diabetes are having difficulty obtaining their prescribed medications and/or medical devices.

This insidious practice not only places additional financial burden on people with diabetes and their families but jeopardizes patient safety and long-term clinical outcomes. A recent study found that forced non-medical switching was associated with negative effects on economic outcomes (e.g., medical or treatment costs) and medication-taking behaviors, particularly among individuals with stable, well-controlled disease.

Non-medical switching graphic showing increases co-pay and off formulary arrows

Forced non-medical switching can happen in one of two ways:

  • The insurer stops covering the medication or medical device, forcing patients to pay out-of-pocket for the medication/device that is already working well for them.
  • The insurer increases patient co-pays, resulting in additional financial hardship for a disease that is already too expensive.

In both scenarios, individuals must choose between continuing with their current treatment at an increased out-of-pocket expense or switch to treatment that may not be as effective (or even dangerous), which could lead to worsening diabetes control.

What You Can Do To Help Stop Non-Medical Switching

To put a stop to this practice, we need to know if you have experienced forced non-medical switching data, either as a patient or healthcare professional. If so, we need to know how it has impacted you. This information will allow us to put pressure on insurers, legislators and regulatory agencies to reform the practice of non-medical switching.

Children with Diabetes (CwD) is a 501(c)(3) non-profit organization that provides education and support to individuals and families living with type 1 diabetes. The organization has recently established a website (www.MyMedsMyChoice.org) to gather basic information from with all people with diabetes (or their caregivers) and healthcare professionals about their experiences with non-medical switching. The website links to two short surveys: Patient/Caregiver and Healthcare Professional.

 

Click here to take the survey and help gather this important data!

Link to MyMeds My Choice website for non-medical switching

 

The Diabetes Patient Advocacy Coalition (DPAC) supports this initiative and urges you to go to the website and complete the short Patient/Caregiver or Healthcare Professional survey. DPAC’s statement on non-medical switching can be found here. 

I think we can all agree that addressing the rising cost of healthcare should remain a high priority for everyone. However, the practice of forced non-medical switching in individuals who are stable on their current diabetes medications and medical devices is dangerous, indefensible and shameful.

I believe that anyone whose diabetes is stable or well-controlled should be allowed to continue with the medication, treatment and self-management devices that is allowing them to succeed without the burden of non-medical switching. Treatment and medications should be designed, recommended and prescribed by the patient and his/her medical team — not by an insurance company for economic reasons.


Christopher G Parkin guest post author on forced non-medical switchingChristopher G. Parkin is President of CGParkin Communications, Inc., a consulting firm that specializes in diabetes education development. During the past 30 years, Chris has authored numerous articles on diabetes technology and management and has assisted several medical organizations in the development of clinical practice guidelines, position statements and consensus conference reports regarding diabetes management. Chris received a Master of Science degree in education and instructional design in 1996 from Indiana University, Bloomington and served as Adjunct Professor at Indiana University.


To learn more about non-medical switching and how it hurts people with diabetes, watch this video:

Guest Post: Jake Johnston on Effective Advocacy

Tips for Effective Advocacy

fullsizeoutput_9I’m a huge fan of DPAC and the work being done to highlight the policy environment facing people living with Type 1 Diabetes. DPAC has created an amazing resource where you can quickly and easily see what is happening, how supportive your elected official is, and how to engage in the legislative process.

So when DPAC asked me to provide some thoughts about what it was like to be lobbied as Congressional staff, I jumped at the chance to help. I spent nearly ten years working on Capitol Hill as congressional staff. I’ve met with thousands of people and helped elected officials navigate the hundreds of decisions they have to make every day.

I also have Type 1 diabetes. And I am the father of a daughter with Type 1 diabetes. So I have a vested interest in seeing all of us engage with congress to improve the lives of people living with T1D.

You already know the basics of lobbying as a T1D advocate (be prepared, tell your story, etc.) but I wanted to add my thoughts about how to take the extra step to make your meeting stand out from the crowd.

The View From the Other Side of the Desk

Members of Congress have dozens of meetings every day. They have to prepare materials, respond to media inquiries, be prepared to vote in committees and on the floor of the House or Senate, liaise with their party leadership or committee leadership, conduct outreach back to interested parties in their district and stay apprised of pretty much everything that’s in the news.

Not to mention pushing their own legislation and priorities and focusing on their next election.

Because of this, meetings and issues tend to get treated in a triage manner. And any excuse to push off a decision or work simply creates more space and time for issues that are immediate and pressing. Prepping for a legislative markup in committee, a vote on the floor today or a media interview in the afternoon will take the primary focus of the member of congress and their staff.

Your trick as a diabetes advocate is to make your asks at the right time, and if the timing isn’t quite right, to create some urgency or build a relationship that allows you to make the ask again in the future.

Urgency is Your Friend

Because of this, consider the following two asks:

“We’re asking you to support HR 1 because it will improve the lives of people impacted by Type 1 Diabetes. Will you cosponsor the bill?”

We’re asking you to cosponsor HR 1 this week to show leadership there is bipartisan support to bring this bill to the floor for a vote. People with Type 1 Diabetes will benefit from this bill and we need your support this week to get a vote.”

Urgency wins every time.

Your Story Counts – But the Ask is Everything

Your story is the reason you meet with a member of congress. Telling them what life with Type 1 Diabetes is like, describing your diabetes management and the cost of living with the disease makes your case. But a member of congress can’t act on your story alone. You need to give them something to do.

DPAC has up to date information on all the legislation impacting people living with diabetes. When you meet with a member of congress, tell your story, but be sure to make the ask for a specific action (or more) to have a policy impact.

Think of your story and your ask as mutually supportive things. Your story doesn’t have its full impact without an actionable step, and your ask needs a story to define its importance.

Build A Crowd

Do you know what elected officials love? A friendly audience to talk to. The single best lobbying advice I’ve ever heard was simply to build a crowd and let a politician stand in front of it. This is true for diabetes lobbying too.

Your story and a focused ask will go a long way to success, but to really seal the deal, think about helping spread the word for the elected official about their support. For example:

“I’m part of an online community that helps provide support for people living with Type 1 diabetes. We have about 1,000 FaceBook members. I’m planning to post a recap of this visit and let people know how this meeting went. I’d love to report that you have cosponsored HR 1.”

“I’m planning to meet with a reporter from the Hometown Daily Herald to let them know about my visit with you and the policies we’re trying to impact for people living with diabetes. May I tell them that you cosponsored HR 1?”

“We’re live-tweeting our DC meetings this week to our community. If you wanted to tweet your support for HR1, we can help retweet it to dozens of interested parties throughout the state.”

Stay Connected on the Issues

By engaging members of congress on diabetes policy, you get to keep them accountable. Follow up after your meeting with a thank you note or the public recognition you promised. But more than that, keep emailing as new issues and items come to the table.

Follow DPAC (and support their work) so you know that when a call to action goes out for a specific issue (Medicare coverage for CGMs!) you already have a relationship with a specific member of congress and/or their staff. You can quickly re-engage and make the case.

Thank You

On behalf of my family and friends, thank you for your willingness to be a leader and an advocate for people living with diabetes. We’ve collectively accomplished a lot over the past twenty years on the basis of discrimination and health access, but there are so many funding, policy and regulatory challenges ahead and your advocacy work is a critical part in our shared future. I appreciate the chance to be a part of your team!


About Jake

fullsizeoutput_1789Jake Johnston is the President of the Johnston Group, a federal lobbying firm based in Seattle, Washington and the founder of ConnecT1D, a non-profit providing social and emotional support to people impacted by Type 1 Diabetes. He lives in Seattle, works in Seattle and Washington, D.C. and leaves his CGM on longer than he ought to.

 

Guest Post: A DME Owner’s Perspective on Competitive Bidding

sam-headAs the owner of a durable medical equipment company, pharmacy and the parent of a Type 1 diabetic child, I participated in Medicare’s competitive bid program and watched closely as Medicare decimated the reimbursement amounts for diabetes supplies.

My company successfully bid and was offered a contract for the initial round of mail order diabetes testing supplies in addition to other DME equipment. This was a trial for mail order diabetic supplies before it was rolled out nationwide.

I chose not to accept the bid for diabetes supplies but did accept other DME contracts. In hindsight, I should have accepted that contract but it also prepared me for the national bid that was to come. I looked at it as practice for the success of my future business.

I bid the first round of the national roll out along with many of my peers. The statistical numbers were something like 2500 DME providers that had billed for diabetic testing supplies prior to the national bid. Medicare awarded 15 contracts. Medicare estimated 10 million beneficiaries had diabetes and 60% used mail order for diabetes supplies. (That gives you some idea of how many patients would be affected.)

Competitive Bidding Program

The Competitive Bidding Program was flawed from the start, allowing any qualified bidder to submit “lowball” bids and then decide whether or not to accept the bids after the bid amounts were published. Basically, you could bid well below your cost, get a contract offer, and then decide to accept the bid or not.

If your business relied on that product category, then you bid low and crossed your fingers. Unfortunately, this creates an artificial price point in the bid amounts because if the low ball bidder chooses to not accept the bid price, the median price was not recalculated by Medicare.  Many economists and scholars evaluated the Medicare bid process and published article about how the entire process was flawed.

Quality

Now let’s talk diabetic supplies. Even before competitive bidding I was looking for quality, inexpensive meters and strips that I could provide to my Medicare patients. I would test the “off brand strips” on my Type 1 diabetic son compared to name brand strips to see how the readings compared. My son was already checking his sugar up to ten times a day as a very active, very self-managed type 1 diabetic so it didn’t even require an extra finger stick.

If I could find good off brand strips that only required small sample sizes and no-coding they would be offered to my Medicare patients. I did not consider strips that required coding or the large “hanging drop” of blood sample size. I had thousands of Medicare patients, so I was able to get very good contract pricing from large name brand companies. If a small percentage of patients chose less expensive strips, I would be saving a considerable amount on my cost of goods because the Medicare reimbursement was the same on every strip regardless of brand or quality.


If what you’ve read so far disturbs you, you can do something about it. Click the image below and send a message to Congress, letting them know this isn’t acceptable. 

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The Math

To simplify pricing we will only discuss pricing on 50 strips. Meters were almost always free from the manufacturers or distributors because they wanted the strip business. My contract pricing on name brand strips was about $20 for 50 strips. Medicare reimbursed about $32. Most patients got either 100 strips every 3 months (if they needed them) or 300 strips every 3 months depending on if they were Type 1 or Type 2.

Factor in shipping costs of about $5.50 per shipment and the profit was pretty good. Keep in mind, there is a lot of administrative cost associated with the required paperwork, delivery confirmation, and billing Medicare. Depending on the scale of your business this cost varies. I did not buy the super cheap strips that had 10 year old technology, required giant sample size, needed to be coded and the readings were very poor. The cost on those was about $9.00 and were most often a never heard brand.

Here is the breakdown on how Medicare’s competitive bidding changed diabetics’ lives.

  • – The small market trial reduced the reimbursement to about $18.00.
  • – The first round of nationwide competitive bidding reduced the thousands of providers to just 15 providers for the entire country and a few other markets like Puerto Rico.
  • – The reimbursement dropped to $10.41 per 50 test strips.
  • – In 2016, the National Mail Order contracts were re-bid again, reducing the providers to just 11 providers and the price came in at $8.32 for 50 test strips.

What’s Happening Now

$8.32 is the reimbursement as of July 1, 2016 through December 31, 2018. The last I checked, my contacts in the industry said they could buy cheap, inaccurate strips for about $5.00. Then you add in your shipping cost, administrative cost and billing cost. Also, because of rampant fraud, Medicare conducts a lot of audits and denies a lot of claims for supplies. That eats in to your profit substantially.

I ask you to add those few figures up that I have given you. There are other rules built into to the bid process that are supposed to protect the end user of diabetic supplies; rules designed to keep the companies from switching your meter/strip brand to another model (because they are cheaper) but the rules can be manipulated.

Gone are the good, modern meters. You can call and ask for a known name brand but the suppliers will tell you they don’t stock that brand and to call someone else.

All I can say is I’m glad I am not a Medicare patient. Competitive bidding has been implemented on most highly utilized DME products like oxygen and CPAP supplies. The suppliers have been forced to file bankruptcy or just close their doors, leaving patients to suffer. The diabetic supply competitive bid is an example of how bad other DME categories will get; it is not an if, but when.

I sold my business to a national competitor in 2013 because I was able to successfully “win” many bids for home oxygen and CPAP supplies. Because my son is a Type 1 diabetic, I volunteer and donate to JDRF as they actively fund many other businesses that develop new devices and medicines that help all diabetics.


Note: Curious as to what meters and strips are currently offered through the Medicare Competitive Bidding Mail-Order program?

Out of nine national mail-order suppliers, three “household” name brands are offered: Bayer Contour/Contour Next, Abbott Freestyle Lite, and Roche Accu-Chek Aviva.

The others? How many of these have you heard of?

On Call Express, On Call Plus, Solus V2, True Balance, True Result, True Test, Prodigy Autocoder, Clever Choice, Clever Choice Voice, Advocate Redi-Code, Advocate Redi-Code Plus, Evencare, Embrace, True Metrix, Glucocard Expression, Glucocard Expression Vital, Caresens, Caresens N, Novammax, Unistrip I, Easy Plus II, Easy Step, Easy Talk, Easy Track, Gmate.

It’s important to not lose access to quality, accurate meters and strips.

Use this link to learn more and take action. 

 

Guest Post: Victor Walsh on Competitive Bidding

victor-a-walshDPAC shares stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Dr. Victor Walsh, Ph.D and PWD (person with diabetes),  gives his thoughts and comments about the Medicare Competitive Bidding program for diabetes testing supplies by sharing his story.


On the morning of January 21, 2014, I went into insulin shock and lost consciousness on the front porch of my home in Santa Cruz, CA. A passerby called 911 and a medic alert team revived me intravenously with glucose and then took me to nearby Dignity Hospital.

Several months later, I contacted the Centers for Medicare and Medicaid Services (CMS) in San Francisco. In my email to David Sayen, the Regional Administrator, I mentioned that this episode could have been prevented, “if I had coverage for more test strips to check my blood glucose.” I also noted that I had a recent second medical emergency, in which I went into insulin shock asleep, but somehow woke up. Unable to call anyone or talk, I crawled into the kitchen and revived myself by licking up apple juice that I had spilled on the floor.

Competitive Bidding Program (CBP)

What is happening to me and other insulin-treated diabetics is an unfolding disaster that has eluded the media and public awareness. In 2011, Medicare launched its Competitive Bidding Program (CBP) as required by the 2003 Medicare Modernization Act (MMA) to reduce costs, prevent waste and streamline acquisition of medical equipment and supplies for Part B beneficiaries.

Under CBP, coverage of test strips is limited to 300 over three months or three per day. Additional strips may be covered provided the treating physician can justify their usage as “medically necessary and reasonable.” The physician must provide the beneficiary’s testing logs to the supplier to confirm a higher frequency in use. The process is unwieldy and prone to error; burying physicians in paper work that detracts from time with patients.

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To learn more about this program, click the image.

Claims and appeals on my behalf have been repeatedly denied resulting in lapses of coverage and mounting out-of-pocket expenses, including for continuous glucose meters, transmitters, sensors and other diabetic equipment that Medicare does not cover. Many seniors simply do not understand how CBP works or are unable to record logs and thus slip through the safety net.

Diabetes is expensive to treat, especially in a patient’s later years when ongoing difficulty to control glucose levels often leads to other serious complications. In 2014, 28% of Medicare’s beneficiaries had been diagnosed with diabetes. Almost one in every three Medicare dollars was spent on their care.

Controlling Fraud And Waste, But At What Cost?

Medicare’s unprecedented growth over the past decade has triggered an epidemic of fraud, abuse and improper claim payments amounting to an estimated $60 billion now. In 2014, improper payment for durable medical equipment and supplies totaled $5.1 billion. This includes big-ticket items like wheelchairs, respirators and oxygen concentrators, as well as blood glucose test strips.

Clearly, there is a compelling need to control fraud and waste, but CBP’s focus on documentation is not the right approach, especially as it relates to cases like mine. It creates real barriers to attaining necessary testing supplies and is dinosaurian in a digital age.

Hypoglycemia and CBP

Furthermore, CMS’s staff does not understand the life-threatening consequences of a diabetic condition called hypoglycemia unawareness—the inability to recognize the onset of rapidly dropping blood glucose levels. Not all diabetics experience it, but older, long-term, insulin-treated diabetics like me are prime candidates.

Hypoglycemia occurs because continual and erratic blood glucoses eventually incapacitate the brain’s glucose-sensing neurons from transmitting symptoms. The brain does not store glucose, but draws it directly from the bloodstream. Rapidly declining glucose levels seriously affect its cognitive, locomotive and visual functions and, if untreated, lead to convulsions, comas, brain damage or death.  

Limiting coverage of diabetics vulnerable to hypoglycemia to three strips a day is not only foolish but irresponsible and dangerous. They must check their blood sugar before and after every meal and always at bedtime; otherwise, they may not wake up. Ask any endocrinologist.

Restricting Access

Another problem is the ongoing difficulty to acquire essential testing supplies. In June, my mail-order supplier CCS Medical withdrew from supplying branded test strips because CMS cut the reimbursement rate by 20%. I never heard from CMS. It took me over a month to find another supplier  that carried One Touch Ultra Blue strips that I use for my blood glucose meter. Service ended abruptly severally weeks later when the mail order company stopped carrying them. There is only one mail order supplier in my area that still carries this brand. As for local pharmacies, only one accepts Medicare beneficiaries whose test strip usage exceeds the local coverage limit of three per day.

Jeopardizing Safety

Such disruptions and delays, along with long wait times for follow-up calls, jeopardize patient safety. I have repeatedly called or emailed CMS staff in San Francisco asking questions about how the mail-order suppliers are monitored, but answers almost always focused on coverage requirements, not supplier service, and now I know why.

First, beneficiaries are required under law to order supplies and equipment from either a CBP mail-order supplier or local pharmacy contracted by Medicare. The contracts differ in one critical respect: Pharmacies are not part of CBP and thus have the option to bill beneficiaries, while the small number of mail-order suppliers must accept as full payment the amount approved by Medicare for each item. Reimbursements are substantially less than Medicare’s fees for services, but the trade-off is that the mail-order suppliers gain a monopoly on a burgeoning market of millions of new Medicare customers.

Second, the law exempts CBP from any safety monitoring or oversight restrictions. Given the low, volatile profit margin, this has prompted mail-order suppliers to reduce overhead. The new rate of reimbursement for glucose test strips is only $6.65 per vial of fifty. As a result, mail-order channels have limited the availability of branded test strips needed by diabetics. The outcome has been a disaster for them and probably other Part B beneficiaries.   

In April 2016, the American Diabetes Association (ADA) published a report in its journal Diabetes Care that is highly critical of CBP’s impact on the safety of insulin-treated diabetics and to access to testing supplies. In the program’s nine pilot test markets, the proportion of insulin-treated diabetics that switched from full to partial or no testing supplies increased by 58% compared to a 14% decrease in non-test sites.

The report found that death and hospitalization rates of diabetics in those markets were nearly twice those of Medicare’s other insulin-dependent beneficiaries. Despite the report’s recommendation to suspend the program immediately, it was expanded to the entire nation in July 2013.

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You can act now to tell Congress this must stop by clicking this link.

Programs to reduce costs, though necessary, should never be pursued if they risk patient safety. CMS has never explained how or if it assessed the risk to diabetic recipients before launching CBP and how this program is “reasonable and necessary” in accordance with the Social Security Act of 1965 that it is charged to uphold and administer.

Living with a chronic, incurable disease can be overwhelming and life-threatening. It demands rigorous adherence to a daily regimen and vigilant self-monitoring. This is my responsibility, but it is Medicare’s responsibility to provide the essential tools to manage it.  For me this means CBP should not invalidate my right to manage my health as prescribed by my endocrinologist. In this capacity, CBP has failed miserably and must be repealed by the next Congress in order to prevent further loss of human life.


Diagnosed 54 years ago as a type 1 diabetic, Dr. Victor A. Walsh, Ph.D, is a retired California State Parks historian.  Now a Medicare Part B beneficiary, he is concerned about coverage and management issues involving diabetic testing supplies. His historical and literary essays have appeared in the Christian Science Monitor, Rosebud, California History, Journal of the West, Travel Thru History, San Antonio Express-News, Irish America, Literary Traveler, among other publications.

Guest Post: Chris Clement on Why #DiabetesAccessMatters

We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Chris Clement of Diabetic Ink,  gives his thoughts and comments about access and technology by sharing his story.


ChrisClementLiving with type 1 diabetes for 19 years (this week) I have seen a lot of diabetes technology innovation. I’ve used numerous glucose meters, a few different insulin pumps, various types of insulin, and now a CGM for the past year. Each time I am able to choose new tech to manage diabetes I see a significant improvement in my health. On the other hand, there are times when I have no choice, and I am left to figure out how to navigate around the speed bumps, attempting to adjust my medications or tools with the least amount of disruption. It’s discouraging and affects every aspect of the already-difficult journey.

Diabetes technology works best when it can reduce worry, human error, and blood sugar fluctuations. Innovators have found ways to combine technologies like glucose meters or constant glucose monitors that can talk to an insulin pump. Some pumps have settings that protect users and help individuals get the best possible results. Innovators find gaps in blood sugar management and fill them with solutions. The results can make a world of difference for our daily life and our health outcomes.

Choice in Technology

The problem is that people can be so different from one another. We don’t all have the same needs, we don’t all have the same gaps, we don’t all have the same lifestyle. It is so important to have a choice in technology that will best support our individual lives and needs.

The reality is that doctors, pharmacists, tech innovators, and insurance companies do not manage our diabetes. We do.

It’s Up To Us

It’s up to us to stay alive and to live well. It’s up to us to feed this complicated beast every single day. And yet it seems that the more great tools become available, the more red tape and restrictions are raised.

When I received my CGM a year ago my life changed quickly. My A1c dropped from 8.5 to 6.8 in three months. Improvements like this are common. But so is restriction to this technology. The battle to obtain coverage or even continued coverage of what is working best adds so much strain it nearly cancels the desire to fight for it. And yet, we fight because we have seen the results, we have found our individual paths, we know what we need in order to live well.

But, now we are seeing a new dilemma emerging. Alliances between insurers and providers, I believe, are the beginning of a dangerous new normal that further limits access to the treatments that we have grown to rely on for our health. These agreements can cause distress for the individuals that rely on these treatments and threaten to erode much of the progress that has been made for people with chronic conditions. It is very important to take a stand now. Share your story and strengthen the collective.

As has been stated by many diabetes advocates: We didn’t choose diabetes, but we should be able to choose how we manage our diabetes.



access_™ 612x300If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.

Guest Post: Richard Vaughn on Why #DiabetesAccessMatters

We will be sharing stories about access and the issues patients have encountered in getting the diabetes supplies, medications, and services they need. Richard Vaughn of Richard’s Rambling Reviews,  gives his thoughts and comments about access by sharing his story.


10537874_1522101764744303_7846710536180999057_nI was diagnosed with diabetes in 1945, when I was 6. After 62 years of type 1 diabetes I was having some diabetes complications, and decided to use an insulin pump for the first time. The pump gave me much more stability with my blood sugar levels, with fewer highs and lows. My complications improved a lot, but a few years ago I started having complications again.

The likelihood of complications increases with the length of time since diagnosis. Then I read about the Dexcom CGM, and many of my friends were praising it highly. I wanted a CGM so much, but Medicare would not cover the expenses involved. My endocrinologist wrote a letter of medical necessity, but I was still turned down by Medicare. A friend was changing from the Dexcom G4 model, to the G5, and she sent me her older G4 equipment.

I love the Dexcom, and it has helped me so much!! The equipment will expire soon, and I cannot afford new equipment out of pocket. My good diabetes management will suffer, and my complications will probably resurface. I do not want neuropathy and retinopathy in my life in the years ahead.

If Medicare would agree to cover a CGM for me, I would have much better control of my diabetes. I feel that my health and life expectancy would improve significantly, without any serious complications, if Medicare would cover a Dexcom CGM.

Help Richard & Others Get CGM Medicare Coverage!

Act now and with a few clicks, send a message to your Congressional representatives, asking them to co-sponsor the CGM Medicare Act!


access_™ 612x300If you would like to share your story about access and why #diabetesaccessmatters to you and your family, please do so here. Our voices and our stories are powerful. Share yours.

Guest Post: Mindy Bartleson – Part of The Change

I find it empowering that as a person with diabetes, I am a part of the change no matter how big or small- at a national or even a local level.

I love advocacy. I love the little and the big things related to it. It’s what actually makes me feel better about my Type 1 Diabetes more than anything else. 

There’s always a need for advocacy, ranging from policies in government to education. I found the need for diabetes advocacy was high for me in K-12. You’re spending 6-8 hours, 5 days per week, 9 months out of the year in school. (This doesn’t even take into account when you are involved in any extracurricular activities.)

You don’t “grow out of diabetes.” Things come up at every level of education. I’m grateful for the fact that my family and diabetes care team included me in all advocacy while I was growing up, increasing my involvement over the years. Advocacy is now a part of my soul, as I was able to practice and develop my skills and methods while growing up.

Growing Up

50milk-color15@cictr.com_20160517_074228-page-001When I was diagnosed with Type 1 Diabetes at the age of 7, I was the only one in my school and we didn’t have a school nurse. By second grade, we had a school nurse and developed a relationship with the head school nurse of our county. Every time I went to a new school, we advocated to get nutrition information and meal schedules so we could carb count in advance (some years were easier than others). We were always advocating to make sure I could participate in activities and that our voices were heard. At 13, we learned about the 504 plan and advocated to utilize that.

In  high school, I had to fight to be able to carry my medical supplies and to be able to take care of my own diabetes. They didn’t even want me to carry low supplies on me!

We won the medical supplies battle, but there wasn’t a great location to store extra supplies if needed. During my sophomore year, we advocated and used our connection with the head nurse of our county to have a place to store all medical supplies (not just diabetes). And we also earned a part time nurse.

But I had a fear that the the moment I graduated, everything we had worked on would be gone. The proud, relentless, persistent, and (happily annoying) squeaky wheel would now be out of their hair.

Being Part of the Change

advocacy-1142138-640x640Right after graduation, I met with the superintendent of our schools to talk about my concerns. He was impressed that I came even though I wouldn’t be there anymore. He said he would follow-up and check-in on policies for schools in our county. Policies have been made, but I still check-in even 5 years later. Advocacy sometimes means that it may not benefit me, but it will benefit someone else in my community.

If there’s a problem or something comes up that impacts not just yourself, but others with or impacted by diabetes, you can do something about it. Even if you think it only impacts you, still go for it. Most likely, there’s someone else who’s impacted too. Here are my thoughts: 

  • Educate, raise awareness, and bring attention to not just the issue, but diabetes as well. I find education and bringing attention to  issues- including facts, solutions, and your stories- are very important. Less issues arise when people are fully educated. This also includes educating yourself and being what I call a “temporary expert.”
  • Bring people together. There are powers in numbers. Most likely, you won’t be the only one. It might not even be specific to just diabetes.
  • Ask for help from people in your life and experts. There are people who are willing to help you. It’s hard to do it alone.
  • Be accountable. Making someone and yourself accountable is important. Even after someone agrees to change, you need to check-in on it to make sure it happens or doesn’t go away. You need to be involved and invested.
  • Introduce yourself and stay in touch. It’s really helpful that people know you. I reach out and introduce myself to decision makers even if I don’t have something I want to change at that moment and stay in touch with people after change.
  • Don’t give up. It takes time. Maybe you have to put it on hold for a moment. Maybe one person says no. You think you’re too young. You think you’re too old. Don’t give up. Great things take time.
  • Use your strengths to your advantage. This includes your own story, which is the most powerful one you have to share. There are different tactics that work for everyone. You don’t have to be a lawyer, politician, or professional. Be you.
  • Be the proud, relentless, persistent, and (happily annoying) squeaky wheel during the whole process. Sometimes you have to be, and that’s nothing to be ashamed of. You have the media, people who care, and other means to come to your aid if needed.
  • Share your story. Share your story during and after the change. Put a face to it. It’s not just about facts and numbers, it’s about making it all work together. The ripple effect is magnificent!

 Use your passion and experiences to guide the change and develop your skills along the way. Share your story.

Advocacy isn’t always big or small. It isn’t always a crowd. It isn’t being alone.  It isn’t just about government and laws. It can be with insurance, medical companies, or your care team. It’s about the ground up and trickle down effect. It’s not always loud or in the media. It’s not always right now.
It’s change and so much more.


Mindy is the Program Assistant at the College Diabetes Network, CDN, in Boston, MA and is a former CDN Chapter Leader. She graduated Cum Laude from the University of Georgia with a Bachelor’s in Social Work and a minor in Sociology. She was diagnosed with Type 1 Diabetes on March 8, 2000 when she was 7, and she has been involved in the Diabetes Community and advocating since then. She thoroughly enjoys Diabetes Camp, travel, crafts, reading, and being awkward. You can check out her blog here and follow her on Twitter and Instagram at @mindy_bartleson and on Facebook at “There’s More to the Story.”

Guest Post: Lisa Laird – Why Diabetes Educators Licensure?

On May 23 the Pennsylvania House Professional Licensure will meet on House Bill 1851, Licensure of Diabetes Educators. Please share your support if you are in PA.

DPAC_LisaLpngLicensure will optimize patient care for those with diabetes by identifying to the public and your doctor healthcare professionals who have education, training, and experience in diabetes education. People with diabetes benefit from specialized skills which promote behavior change. Often we know what to do but carrying out those behaviors require training in how to look at goals and the necessary support to reach them.

Who are diabetes educators?

We do not discourage licensed nurses, registered dietitians, and pharmacists, etc. from teaching patients with diabetes skills to enhance their care. With such an epidemic, all healthcare providers are needed to help. Licensure could provide a legal scope of practice to gather a wide range of healthcare professionals under one umbrella of practice. This will legally define what care is given by the LDE, and safeguard the public. Today, any person can call themselves a diabetes educator, give advice or care without accountability. Tell me, who do you want teaching your family and loved ones?

Diabetes Self-Management Education (DSME) is a proven effective method of sharing self-care behaviors with patients and families. It is your right to attend if you receive Medicare. Risk-reducing behaviors are taught. Consider attending along your journey if you have diabetes or know someone who does.

Please support House Bill 1851 to ensure those who call themselves diabetes educators have met the qualifications to do so.

Thank you,

Lisa Laird, RN, BSN, CDE

Past Chair, Pennsylvania AADE Coordinating Body

 


DPAC – ACT NOW. Pennsylvanians ask your representatives in Harrisburg to support House Bill 1851

Other PA Opportunities


About Lisa: Lisa Laird, RN, BSN, CDE
Past Chair, Pennsylvania AADE Coordinating Body, 2014 and 2015

Following a decade of work as a diabetes nurse educator, two of her four children were diagnosed with type 1 diabetes. The application of evidence into practice affects her and her teaching profoundly. Lisa works in staff development where she teaches different healthcare disciplines, diabetes care, and consults with patients and families as inpatients. Lisa engages in policy writing and process improvement working to advance the model of healthcare delivery.

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