DPAC

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Congressman Rush Introduces Insulin Access Bill

Congressman Bobby Rush (Illinois 1st district) along with 33 cosponsors today introduced a bill that would dramatically increase access to insulin. H.R. 366 eliminates the cost sharing requirement under Medicare and Medicaid for insulin.

The bill is formally named the Insulin Access for All Act of 2019. The full text of H.R. 366 will be available HERE a few days after introduction. The bill would amend the Social Security Act to eliminate cost sharing with respect to coverage of insulin as a covered part D drug under the Medicare program or as a covered outpatient drug under the Medicaid program.

According to a press release, Rep. Rush was inspired to act so that people with diabetes would no longer have to pay an out-of-pocket cost for their insulin. “This bill, introduced with significant cosponsors, addresses the appalling issue plaguing Americans who have one of the most devastating and debilitating diseases of modern times — diabetes. There are many who simply cannot afford the insulin they need to live longer, active, and productive lives. […] No American should go without life-sustaining medication,” said Rush.

DPAC applauds the Congressman and his efforts to make insulin more accessible!

Diabetes Patient Advocacy Coalition (DPAC) and National Diabetes Volunteer Leadership Council (NDVLC) Announce Patient-Centered State Transparency Model Legislation

Tampa, FL December 21, 2018 – Diabetes Patient Advocacy Coalition (DPAC) and the National Diabetes Volunteer Leadership Council (NDVLC) today released the Access to Lifesaving Medicines Act (ALMA), patient-centered prescription drug cost transparency language that DPAC Champions will advance in state legislatures beginning in January 2019.

“Reducing prescription drug costs – especially for lifesaving medicines like insulin – is a national problem. People with diabetes can’t afford to wait for Washington to fix our broken system,” said NDVLC President Larry Smith. “We developed ALMA for states that want to enact meaningful measures to help patients see lower drug costs at the cash register, where it matters most.”

ALMA’s model language includes patient-centric measures that are specific to medicines for diabetes and other chronic illnesses, as well as provisions benefiting all consumers by injecting greater transparency into prescription drug coverage and reimbursement systems.

“ALMA’s foundation is that patients should always have affordable access to  our prescriptions,” said Christel Marchand Aprigliano, CEO of DPAC. “This legislation will provide relief to people who need life-essential medications, and help states better invest healthcare dollars — by keeping patients healthy through daily management of chronic illnesses like diabetes instead of paying for expensive treatments due to complications from rationing.”

“No one should choose between rent and medications and yet this is a common occurrence in many households today,” Aprigliano added. “We need more than convoluted accounting reports to solve this immediate issue. We need action from policymakers. This legislation will help prevent needless deaths, hospitalizations, and complications.” 

DPAC and NDVLC encourage state legislators and staff to download the ALMA model language at diabetespac.org. Contact DPAC for additional information and to help advance patient-centered transparency legislation.   

# # #

The Diabetes Patient Advocacy Coalition (DPAC) is an alliance of people with diabetes, caregivers, patient advocates, health professionals, health organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. As a nonprofit, nonpartisan organization, DPAC is dedicated to ensuring affordable, safe and quality diabetes treatments and devices for people with diabetes through actionable advocacy as the trusted patient voice. For more information about DPAC, visit diabetespac.org.  

The National Diabetes Volunteer Leadership Council (NDVLC) is a 501(c)(3) patient advocacy organization committed to improving the safety and quality of life for children, adults and their families living with diabetes. NDVLC is comprised of individuals who have served in a volunteer leadership position of a national diabetes organization – including board chairs, secretaries and treasurers of the American Diabetes Association. For more information about NDVLC, visit ndvlc.org.

 

Why I Advocate: Erin Bubb

Why I Advocate: Erin Bubb

I have worked in healthcare for over a decade in administrative and clinical roles. I have had years of training navigating insurance, and the ins-and-outs of how medical practices work.

This training also helped me recognize something wasn’t quite right with my 5-year-old son. He was “starving” after we just ate, had a thirst that no amount of water could quench, and he kept wetting the bed. My Mom-sense was triggered. I did research, then more research. I couldn’t believe what I was reading, or didn’t want to believe. I knew I had to act, it was the weekend so his doctor wasn’t available. So, I drove to the pharmacy and picked up some urine glucose sticks, the kind you use when you are pregnant to check for sugar in your urine. I was looking for answers to disprove what the research said. The results? They Confirmed that the research was right. I knew what I needed to do, so we headed to the hospital.

 

In the Emergency Room the nurse was nervous to tell me his diagnosis. I told her, “I know, it’s Type 1 Diabetes.” She shook her head yes, confirming my fears. The doctor comes in and says, “You caught this very early, his organs have not suffered any damage and he is not in Diabetic Keto-Acidosis.” My son was transferred to a larger hospital that was more prepared to deal with his diagnosis. Then started the training, the head spinning, so much information training.

Once the “dust” settled, I realized that my years of experience would be helpful in navigating this new world of medical supplies, insurance, DME companies, and creating relationships with his healthcare team. The experience helped, but I felt as if my knowledge was lacking. There was so much more to learn.

I now had to learn how to advocate!

My son did not know how to fight the insurance company when they wanted to switch his insulin because there was a “cheaper alternative”. He did not know how to make sure he received all of the medical supplies he needs to just stay alive. He doesn’t know how to write a 504 plan to make sure he receives an education that allows him to thrive while fighting Type 1 Diabetes. He shouldn’t have to do any of this, not yet. That is my job as his mother, his nurse, his nighttime sugar checker, his shield… HIS ADVOCATE!

I advocate so my son, and all those who have to fight daily, just to understand how healthcare and insurance works. We should not need to have a PhD in insurance just to have a fighting chance against this disease.

There has to be a better way, there NEEDS to be a better way.

Guest Blog! Advocating with DPAC’s Champions

Editor’s Note: This post was originally published on Stephen’s wonderful blog, happy-medium.net. Stephen applied for and was invited to DPAC’s inaugural Policy Training Meeting and following Hill Day with the Endocrine Society. We were extremely happy to have him, and his account here shows how thoughtful and passionate an advocate he can be. Thank you, Stephen!


It’s been an incredibly busy year for me. But regardless of how busy I am, I have to admit that there are moments when I know that my time was well spent.

Like the last weekend in September… the last weekend in September was full and eventful. I was fortunate enough to have been able to go to Washington, D.C. for the very first DPAC Policy Training Meeting.

Disclosure: DPAC paid for my hotel and parking for this event. All opinions are owned entirely by me.

Diabetes Patient Advocacy Coalition (DPAC) held this training meeting to help about 25 of us advocates learn about important issues that many of us have been discussing, and to learn how to more effectively advocate our positions before lawmakers. Saturday and Sunday were about learning, and Monday was about going to Capitol Hill and putting what we learned into action before Congressional staffers.

Saturday and Sunday were spent learning the ins and outs of why the price of insulin is getting higher and higher. We also learned about two measures before the United States Congress right now: House Resolution 5768 and Senate Bill 3366 – Expanding Access to Diabetes Self-Management Training Act of 2018.

Let’s take a look at each of these, one at a time.

Access to affordable insulin

It’s no secret that the price of insulin is skyrocketing. In fact, the cost of insulin has tripled in the past 15 years. That is not sustainable.

However, the Congressional Diabetes Caucus has requested information from a number of end points in the insulin supply chain (fancy talk for patients, medical professionals, pharma, pharmacy benefit managers). They’ve received information back, and they’ve been compiling their findings in a report, which is due to be released soon… hopefully, within the next month. [Editor’s note: the report was released on November 1, 2018.  Find DPAC’s thoughts on the report here.]

At the moment, there is no legislation before Congress which will address the price of insulin. But if we’re going to get there, we need to know where the pain points are. We’re hoping this report will shed some light on that, and that’s why we asked lawmakers to share that report the moment they get it, with their constituents and with DPAC, because there’s nothing better than transparency when it comes to something like this.

Diabetes Self-Management Training Act

Sponsored in the House by Representative Tom Reed (R-NY) and co-sponsored in the Senate by Jeanne Shaheen (D-NH) and Susan Collins (R-ME), these companion bills aim to increase access to diabetes self-management training for senior citizens who are on Medicare. This is incredibly important for a number of reasons.

Imagine living on Medicare for 10 years after retirement. We know how much diabetes technology and treatment can change in just a decade. Sometimes, keeping up with the latest is like drinking from a fire hose. But imagine not having diabetes self-management training (or DSMT) paid for by Medicare when you need it then. Today, Medicare pays for 10 hours of training in the first year, and just 2 hours per year after that. This bill would change that.

Did you know that Medicare recipients can’t receive Medical Nutrition Therapy (MNT) and DSMT on the same day? So, if you’re 75, and it’s already an effort to get to the hospital where the training is conducted, but you have to go one day for MNT and another day for DSMT. Doesn’t make sense, does it? This bill would change that.

The bill would also allow for DSMT to be delivered outside of a medical professional setting… think local library or fire department meeting hall. There’s also a provision to look into expanding virtual training via telehealth or online. Both of these could be game-changers for people in rural communities like Dorchester County, Maryland, which has the highest prevalence of diabetes of any county in my state, but where many people live quite a distance from the nearest hospital.

We know that since we’re nearing the end of the 115th Congress, there’s virtually no chance of these measures passing before the end of the year. But we went and asked lawmakers to sign on as co- sponsors of the legislation so that when this comes up (as it undoubtedly will) in the 116th Congress, it will be much easier for these House Representatives and Senators to say yes.

For more on this important legislation, click HERE.

The best part of the long weekend? Going to the U.S. Capitol with my fellow DPAC Champions to advocate before Congressional staffers. My meetings with staff from the offices of Rep. John Sarbanes (D-MD), Senator Chris Van Hollen (D-MD), Senator Ben Cardin (D-MD), and Senator Patty Murray (D-WA) were productive and helpful. We didn’t get a single No on anything. A huge success.

Before I wrap up, a few Thank Yous:

Thanks to Christel Marchand Aprigliano and Leyla Mansour-Cole from DPAC for organizing the weekend and doing the cat herding so the DPAC Champions would be in the best position possible to fulfill our mission.

Thanks to Logan Hoover, Legislative Assistant for Representative Tom Reed (R-NY), who is Chair of the Congressional Diabetes Caucus. He spent time with us on Sunday to give us valuable information on how to share our stories and make an impact with the people we met on Monday.

Thank you to Jasmine Gonzalvo for being an amazing supporter and educator over the weekend, on the importance of both of these initiatives. And to Stewart Perry and George Huntley for doing an amazing job of explaining how “market forces” (my quotation marks), rather than patient empathy, have impacted the price of insulin in the USA.

Finally, thanks to our friends at the Endocrine Society and Lions Club International for partnering with us in this effort. It takes a village, and I’m glad to have these people on my block.

It’s easy to think of this event as a culmination of lots of effort on the part of DPAC, its Board of Directors, its Patient Advisory Board, and DPAC Champions. I tend to think of this as a beginning.

There was a construction site across from our hotel over the weekend, with a big wall surrounding it, and messages on the wall. When I saw two of the messages, I knew what this weekend meant for me.

It took all of us from a “What if”…

…to a “Why not?”

Whatever the message, I’m confident that the progress we’re making will help to yield positive results for People With Diabetes in the United States.


About the Author

Stephen is an advocate extraordinaire. Here are a few impressive excerpts from his “about me” section of his blog, happy-medium.net:

“I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen.  I’ve been living with Type 1 Diabetes since January 1991.  I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Currently wearing the Dexcom G5 continuous glucose monitor. I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started [happy-medium.net] in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials. […] I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.”

 

Congressional Diabetes Caucus Releases Report on Insulin

On November 1, the Congressional Diabetes Caucus released its long-awaited report on the insulin supply chain. Rep. Diana DeGette and Rep. Tom Reed, the co-chairs of the Caucus, have been conducting a  bipartisan inquiry into the rising patient cost of insulin for more than a year. Their 22-page report responds to the patient outcry caused by insulin becoming less accessible.

The report begins with excerpts of patient stories that underline the importance of insulin as a life-saving drug. It then gives a short history of insulin. Then we get into the good stuff: there’s an overview of the insulin supply chain, an analysis of that system, policy recommendations that aim to make the system work better, and acknowledgements (where DPAC is mentioned! We’re so flattered!).

First, an overview of the insulin supply chain:

The report shows that the insulin supply chain is made up of two parts: first, the delivery of insulin from manufacturers to patients, and second, the flow of payments for insulin throughout the supply and delivery chain. The two parts of the system have many intermediaries that interrupt the direct supply. The intermediaries include wholesalers, pharmacists, providers, insurers, and pharmacy benefit managers (PBMs).

The report provides visual aids for each part of the supply chain; this first one is the physical path that moves the insulin from manufacturers to pharmacies.

The second demonstrates the flow of insulin payments:

Next, the report discusses spread pricing.

Spread pricing is the practice through which a PBM makes its profit. “When a pharmacy sells insulin to a patient, it bills the patient’s PBM for a share of the insulin cost. The PBM sends a bill to the patient’s health insurer that includes both the base price of the insulin, plus a markup for services rendered. […] The markup amount is proprietary to each individual PBM contract[…]”

Here’s the report’s example of spread pricing, using a hypothetical insulin prescription costing $100.

The report notes that if a patient does not have insurance, they’re stuck paying the full list price out-of-pocket. It acknowledges that this cost is unaffordable for many patients.

Analysis of the Supply Chain

The report discusses several incentives for entities along the delivery pathways to artificially raise the price of insulin. These incentives combined with insulation from “market forces that would normally provide a downward pressure on typical commodity prices” are the factors that drive insulin prices higher.

The analysis includes paragraphs on rebates, formularies (the PBM’s list of drugs that they will cover), limited competition and ‘shadow pricing,’ patent extensions, formulary changes, providers, high-deductible health plans, patient assistance programs, drug discount cards, and community and online resources.

Policy Recommendations

Let’s get to the good stuff: what does the report say we should do? It splits its recommendations into different categories.

Combatting Upward Price Pressures:

  1. Encourage the development and use of value-based contracts between insulin makers and PBMs. (Value-based contracts (VBCs) are arrangements between different entities along the supply chain that pay higher rates for better patient outcomes instead of for higher sales volume) The report suggests that lawmakers could direct the Centers for Medicare and Medicaid Services (CMS) to “pilot outcomes-based pricing arrangements in Medicare. Lawmakers could also introduce pilot legislation allowing private insurers to take part in VBC models through managed care contracts or on the individual marketplaces.”
  2. Promote the use of payment arrangements between insulin makers and wholesalers that involve standardized fees instead of rebates.
  3. Require insulin makers, PBMs, and health insurers to disclose the value and volume of rebates that they receive and share with other entities in the insulin supply chain.
  4. Link patient out-of-pocket costs to negotiated prices instead of list prices.

Changing Competitive Market Forces:

  1. Encourage the development of follow-on insulin drugs by addressing patent extensions. Congress could pursue legislation requiring drug manufacturers to show that new formulations of insulin result in improved disease management when compared to current insulin formulations.
  2. Allow generic manufacturers to produce older, off-patent insulin formulations. Congress could direct the FDA to make exceptions or allow fast-track approval for certain biosimilar insulin formulations. But Congress may also need to address practices that dissuade generic pharmaceutical companies from producing older formulations of insulins.
  3. Require manufacturers to disclose their insulin’s list pricing process.

Formulary Changes:

  1. Standardize the process for requesting exemptions or filing appeals from formulary changes. Congress could convene working groups composed of patients, providers, PBMs, and health insurers to develop a patient-centric appeals system.
  2. Standardize drug formulary disclosure of patient cost-sharing information.
  3. Congress could introduce legislation directing CMS to develop a series of standard formulary designs that provide cost-sharing information in an accessible manner.
  4. Limit the number of changes an insurer is permitted to make to a formulary each year.

Additional Recommendations:

  1. Cap out-of-pocket expenses for prescription drugs that are needed for chronic conditions.

DPAC looks forward to discussing the report with lawmakers and coming up with solutions based on these recommendations.

Ready to read the whole thing? You can find the report here.

Help Fee-For-Service Medicare Beneficiaries Access Eye Exams

Medicare has covered an annual diabetic eye exam by an optometrist or ophthalmologist since 2002. Unfortunately, most people with diabetes do not get that exam because it requires them to make and attend an extra doctor visit. Now, there’s a way to get that annual exam in the primary care setting that’s proven to help people get their eye exam – except it’s not available to everyone.

No Access in Primary Care Settings

Fee-For-Service Medicare beneficiaries cannot get an exam in the primary care setting because of a Medicare policy (one that’s not mandated by law) that says only an optometrist or ophthalmologist may conduct a diabetic eye exam. This rule is outdated in this era of telemedicine. Diabetic retinal exams can be safely and effectively performed in primary care settings by utilizing digital retinal imaging with remote eye specialist interpretation. In this exam, primary care providers use a special camera to acquire high resolution retinal images, which are then sent electronically and evaluated remotely by board-certified, state-licensed ophthalmologists. Then, if there’s indication of a problem, the beneficiary can follow up with an in-person visit with an ophthalmologist.

Eye Exams for Beneficiaries Who Live in Rural Areas or Cannot Access a Second Appointment

Now, imagine you live three hours from the nearest doctor. Chances are you’d at least make the trip go once a year to your primary care provider to make sure everything is ok, right? But how likely is it that you’d go back a week later to follow up? Not too likely. When a beneficiary gets their eye exam provided in primary care, they don’t need to go back unless there’s a problem indicated. The numbers speak for themselves: evaluating retinal health in primary care settings during regular office visits achieves up to 90% diabetic retinal exam compliance in a single year.

By The Numbers

Here are some more numbers: Diabetic retinopathy is the leading cause of vision loss and blindness among adults 20 to 75 years of age, and will soon be an even bigger problem within the Medicare population. According to the CDC, 25.2% of Medicare-aged adults had diabetes in 2015. The CDC predicts that these numbers will double or even triple by 2050. Additionally, more than 80% of people living with diabetes will eventually develop diabetic retinopathy. That creates a massive group of Medicare beneficiaries who are affected by diabetic retinopathy that will only increase in number as years go on. And, unfortunately, 24,000 Americans go blind from retinopathy each year, 75% of whom are Medicare-age. Luckily, with early detection, 95% of vision loss cases can be prevented.

Eye Exams for Some, but Not All

Fee-For-Services Medicare beneficiaries are missing out on this service, but other government programs have had great success implementing this digital retinal imaging with remote eye specialist interpretation. The U.S. Veterans Administration and the Indian Health Service have both used this model of care to significantly increase the percentage of diabetic patients who receive retinal exams each year. Additionally, 82% of patients in Medicare Advantage plans are currently covered for annual diabetic retinal exams in primary care settings. Fee-For-Service Medicare beneficiaries also deserve access to this convenient and effective vision-saving technology.

Take Action! Ask Your Rep to Support H.R. 6639!

H.R. 6639 would clarify that ALL Medicare beneficiaries with diabetes have access to annual diabetic retinal exams in primary care settings using digital retinal imaging with remote eye specialist interpretation. Ready to speak up for Fee-For-Service Medicare beneficiaries? Take action today!

Click here to send a letter to your representative asking them to support H.R. 6639 and give Medicare beneficiaries the care they deserve!

Californians: Ask CCS to Return CGMs to Kids with Diabetes!

California Children’s Services (CCS) has made a policy change to reflect the current Medicare coding process for CGM at a significantly lower reimbursement rate, which will kick thousands of kids with diabetes off their CGMs. CCS made this policy change without asking for public comment or making a clinical evaluation– the impact to patients was not considered.

Taking away a child’s CGM has negative consequences.

As anyone who has had a CGM can tell you, diabetes management is drastically changed when a patient uses a CGM. CGMs are medical devices that measure, report, and track glucose levels and trends in real time. FDA has approved modern CGMs to make diabetes care adjustments. Scientific evidence shows CGM usage can improve diabetes management, alarming individuals of dangerous glucose levels so immediate and proactive action can be taken.

Published clinical studies have shown that when patients go off CGM, their HbA1c values increase. Higher HbA1c values are associated with increased hospitalizations, higher overall healthcare costs, and increased absenteeism from school.

Further, CGM systems are not interchangeable, especially for children. Based on FDA product labeling, only Dexcom systems are approved for kids as young as 2 years. If CCS switches a child to a less expensive CGM system, they’d be encouraging off-label use.  Off-label use may pose risks or have unintended consequences for the patient. 

CGMs help reduce risks associated with taking insulin. A recent JAMA article estimates that insulin, a self-administered survival drug, puts 97,000 Americans in the emergency room annually. CGMs provide an extra layer of safety and protection by showing the patient’s blood glucose. Additionally, some CGMs have a ‘sharing’ capability that allows a caregiver to see a patient’s blood glucose remotely. This lets parents keep an eye on their children’s health while the child focuses on other things, like enjoying their childhood. 

Take action now!

Patients, especially children, MUST have access to the products best suited for them to help manage their diabetes! Treatment decisions should not be based on a financial, arbitrary internal policy. Click below to write a letter to officials in the California Department of Health Care Services asking them to reverse this policy and focus on patients for future policy decisions!

Click here to write a letter to CCS!

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!

Proposed Medicare Competitive Bidding Program Rule Would Hurt Patients

Earlier in July, CMS released a proposed rule that makes some drastic changes to the Medicare Competitive Bidding Program (CBP). The CBP is flawed, and unfortunately the proposed rule that is meant to fix it would only make things worse for beneficiaries with diabetes.

What’s wrong with the CBP?

Medicare written on clipboard in front of computerThe CBP applies to certain durable medical equipment, including self-monitoring blood glucose supplies via mail order. When the CBP was created in 2011, the Centers for Medicare and Medicaid Services (CMS) thought that CBP would reduce out-of-pocket expenses for fee-for-services Medicare beneficiaries and would save the program money.

The CBP did drop prices (reimbursement for test strips dropped 72%), but over 95% of mail order diabetes suppliers were eliminated. This meant that beneficiaries had far fewer options for suppliers. CMS did not find there were any negative health consequences to having fewer suppliers, however, beneficiaries experienced difficulty in getting their supplies on time or at all.

Fast forward to 2014, when the National Minority Quality Forum (NMQF) performed a study to try to confirm CMS’s conclusions that Medicare patients with diabetes that are using insulin were not negatively impacted by implementation of the CBP. The NMQF study found that the number of beneficiaries who experienced disruption in receiving testing supplies rose by 58%. And if beneficiaries couldn’t get their testing supplies, then they couldn’t test their blood sugar, which could lead to serious consequences.

In the markets where CMS implemented the CBP, the NMQF study found that there were 42 additional deaths and twice as many hospitalizations as in unaffected markets. Clearly, the NMQF study found that CMS’s report (the one that said everything was fine) was incorrect.

Even with all this research that showed the CBP was harmful to beneficiaries with diabetes, in July 2013, CMS implemented CBP nationally for mail order supplies AND supplies obtained from retail channels. This move eliminated over 98% of suppliers that provide mail order diabetes supplies. Things haven’t gotten better since the program was implemented nationally. A preliminary study shows that disruption in supply availability has continued in all markets, and over ⅓ of beneficiaries on insulin are not acquiring testing supplies at all.

These beneficiaries are forced to make insulin treatment decisions

without knowing what their blood sugar is.

You can read DPAC’s statement on the CBP here.

Why Doesn’t the Proposed Rule Fix the CBP?

Testing blood sugarThe rule proposed in July of this year would, unfortunately, only make the problems worse. The rule would suspend the CBP on January 1, 2019. While the CBP does need to be reevaluated with a removal of diabetes testing supplies from competitive bidding altogether, the solution presented currently is not the answer.

When the program is suspended, the rule provides that any willing qualified supplier may continue to provide diabetes testing supplies. Suppliers of the best testing supplies will not be willing to operate “willingly” if they do not have more information about the return of the program, how they will be paid, and/or who they will be supplying long-term.

Because suppliers of the most accurate and trusted testing supplies will not continue supplying beneficiaries with their needed diabetes testing supplies, beneficiaries will lose access to testing supplies that they have been trained upon. Moreover, the likelihood of their existing mail order supplier continuing to provide these supplies is slim, creating yet another disruption of access.

What Can I Do?

CMS is accepting comments on the CBP proposed rule now. DPAC has done the hard work for you and written out a statement that you can alter and submit with just a few clicks. CMS needs to hear from patients that the competitive bidding program is not perfect, but stopping it under the proposed rule’s parameters makes it worse!

Click here to submit a public comment!

Time To Act

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