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Guest Blog: Erin Bubb on What Patients are Doing with DPAC

Out of all the organizations out there, why DPAC?

Most of us who have lived in this world realize that, in order to effect the greatest amount of change you start from the top-down. DPAC starts with those seated in positions that have the power to literally change the world of those living with Diabetes. DPAC strives to make Diabetes Advocacy simple, so that “regular people” can change their voice into action.

Recently, DPAC had a Policy Training Meeting (PTM) to equip those “regular people” and develop them into “Champions for the Cause.” Items covered were: Advocating using Social Media, Talking to the Press, Overview of Diabetes Legislation, Access to Affordable Insulin, Diabetes Self-Management Training (DSMT), Knowing the Facts, Advocating at the State level, and telling My Story.

As I sat in that hotel conference room, I had mixed emotions about what I, a mom of a T1D, from a small town in Michigan was doing with people who are doing “real adult things,” and have already done so much for the diabetes community. Then we were tasked with writing Our Story, the story of why we fight. 

The story that no one else can tell. The story that made us say “Hell Yes, I’ll Go,” when DPAC said come fight with us. My story is not more compelling than anyone else’s story; it is just being amended to have a better ending.

An ending where my son doesn’t feel afraid to sleep at night, where he can chase his dreams, where he doesn’t feel like an outcast, and where he won’t have to fight, every month, for the medication that he needs to live on this Earth. 

My Story, comes with boxing gloves, because this Momma Bear is ready to fight.

After the PTM, I felt more knowledgeable about the causes and how to use my voice. I felt more equipped to speak about the facts, and I felt empowered to bring the concerns of the Diabetes Community to The Hill. Now my fight has focus and I have a firm foundation of knowledge to stand on. I feel like, if I asked, every single member of DPAC would stand next to me in that little Michigan town and fight alongside me.

The saying from the Lorax comes to mind when I think about this amazing group of people, “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” We may not be power-houses in our communities, but we care! We care enough to say, there has to be a better way!

 

Erin hails from the great state of Michigan. She is a wife, mother, lover of music, nature, and Michigan football. Her son was diagnosed with Type 1 Diabetes at the age of five (2015). Since then, she has immersed herself in learning all she can about this disease and how it impacts individuals and families. 

 

Erin has heard so many heart-wrenching stories that scream for change in the diabetes community. She has a passion to make these stories known and affect change. Erin currently volunteers on the Patient Advisory Council at her local hospital and enjoys connecting patients, caregivers, providers, and staff to help make Diabetes care a positive experience for all involved. She is passionate about non-medical switching and providing support for the diabetes community.

In Virginia? Ask your Legislature to Support H.B. 2515/S.B. 1596, and Ban Accumulator Adjustment Programs!

Accumulator adjustment programs limit access to diabetes medications – many of which have no generic substitute – and devices by preventing manufacturer copay assistance contributions from counting towards a beneficiary’s deductible and maximum out-of-pocket spending limits. 

Without consumer notice, insurance plans have been implementing accumulator adjustment programs. This causes patients to unexpectedly encounter steep prescription drug and device cost sharing mid year.

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Sample Health Insurance Form

Copay Cards and Affordable Access

Copay cards are used by patients to affordably access their medications and, often, patient heavily rely on these to budget their healthcare expenses. Few cost-effective medication alternatives are available to diabetic patients, causing a particular necessity for copay cards. 51% of copay coupons are for drugs with no generic substitute, 12% of which have no close therapeutic substitute at all. People with diabetes spend approximately 2.3 times more on healthcare than people without diabetes, causing accumulator adjustment programs to be disproportionally unjust to the diabetic community. Recent research shows that patients with type 2 diabetes are more likely to adhere to treatment protocol with lower copayments. Copay cards offer a means of assistance to overcome the cost hurdle of diabetes and assist in medical compliance.

H.B. 2515/S.B. 1596 requires that any carrier issuing a health plan in the Commonwealth to include any amounts paid by the enrollee or paid on behalf of the enrollee by another person when calculating an enrollee’s overall contribution to any out-of-pocket maximum, deductible, copayment, coinsurance, or other cost-sharing requirement under the health plan. Simply put, H.B. 2515/S.B. 1596 assists patients in their health care cost management by including copay cards in their cost-sharing requirements.

Accumulator Adjustment Programs and Cost Increase

Partial Hospital Bill with Copay, Deductible and Coinsurance sections

In addition, H.B. 2515/S.B. 1596 alleviates financial burden by preventing unexpected changes to patient’s heath care plans. Accumulator adjustment programs currently increase patient cost-sharing and cause beneficiaries to be uninformed of such programs. This causes beneficiaries to be faced with high-unforeseen costs that they often are unable to afford.

Act Now!

Banning accumulator adjustment programs allows diabetes patients to affordably manage their healthcare through utilizing copay cards and preventing unforeseen changes in their health coverage plans. Click here to send a letter to Virginia lawmakers in support of H.B. 2515/S.B. 1596!

Guest Blog: Mike Ratrie- We Need Sails

We cannot change the wind, we can only adjust our sails.

Yes, it’s a cliché, but stay with me for a moment and we’ll see if I can bring it home.

The wind is this case is pretty obvious, right? Our continuous, but unwanted companion, Diabetes. Some days it blows hot, howling and horrible, others cold, crafty and conniving, but every single day it blows (unless it sucks, of course). Regardless of Type, Diabetes is with us every moment of every day.

Since there’s no getting away from this chronic wind, how do we manage, how can we live and thrive?

We Need Sails.

Sails can be used and adjusted to help us reach our goals. We also regularly have to evaluate whether or not the sails we are using are still up to the job. Sails that are constantly buffeted by the wind (and sun, and rain, and sleet, and snow) need to be changed, renewed, replaced.

Now you can use your imagination to think of all the real-life D-items that can be used for metaphorical sails. Insulins, syringes, pens, test strips, meters, D-pills, etc are what immediately come to my mind.

But what about D-parents, our HCPs (including some fabulous CDEs), the DOC? Sails, every one of them.

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How about Health Care policy, regulations and laws? Yes, they too are sails for us to use.

So this last part is what brings me to write this post.

I’m not going to come up with a cure, or develop an artificial pancreas. I’m not going to create a fabulous D-blog – there are so many great ones out there already.

But what I can do is use my voice with my legislators and policy makers, I can ask them to create better sails, or perhaps a better environment for others to create better sails – ones that can be adjusted more effectively. I can ask you to join me in raising our voices.

Being a DPAC Champion

To that end, I have been given the opportunity to be a part of the Diabetes Advocacy Patient Coalition, or DPAC, as a DPAC Champion. The final weekend in September and the very first day of October, the inaugural group of Champions went to Washington, DC to expand on DPAC’s mission to build better sails legislatively.

This group of about 25 diverse individuals have made a commitment to advocate, advocate, advocate and get to know not only our legislators, but also the staff members that do much of the heavy lifting when it comes to drafting and passing(!) legislation.

Together, the DPAC Champions plan to grow the voice of PWDs in our Nation’s capital, Washington, DC, and also in our Nation’s Capitals, from Annapolis to Tallahassee, Indianapolis to Frankfort, Sacramento to Baton Rouge and beyond. We want our legislators to gain a better understanding of what we face, and how they can positively impact our lives. In addition, through partnerships with the Lions Club International, the Association of Black Cardiologists, DPAC Champions hope to engage and energize everyone including “sugar-normals” to help advance legislative solutions to giving us better sails.

I’d love to hear from you as we “adjust our sails” in 2019.

About Mike

Diagnosed with Type 1 Diabetes in 1973, at age 19, Mike has led what can only be called an extremely normal life with variations. Married to Lucia Ratrie in 2014, Mike is a husband and father to a grown daughter, Anna, father in-law to her husband John, grandfather to two boys, Connor and Finn, step-dad to Lucia’s four grown children, Jason, Steven, Chad and Heather, and servant to 3 cats and 1 dog.

His ever-ready smile, silly humor and positivity have been a part of numerous adventures. These include 5 years on his own sailboat, ranging from Maine to Aruba, pedaling just under 6,000 miles with Lucia on an unsupported cross-country bike trip, and a second 2,000 mile trip from Vancouver Island, BC to Los Angeles, CA. 

A non-blogging member of the DOC since 2008, Mike started insulin pumping in 1999 and CGM’ing in late 2014. Mike is looking forward to moving beyond raising awareness to creating actions that lead to change.

Guest Post: Emma Zgonc on Developing Her Advocacy Story

I was diagnosed with type 1 diabetes in 2011 at age 12. After going to a doctor’s appointment where I was promised there would be no shots, I was ironically rushed to the hospital for a diagnosis of type 1 diabetes and shots for the rest of my life. Since then, I have had many ups and downs, but I have also found a community.

Her Community

I have been incredibly blessed with a wonderful and supportive family. Friends stood by me during my diagnosis and many of them learned with me as to how to best take care of myself. Having this supportive network by my side, I have always had someone there to advocate for me, whether it be with insurance, at a doctor’s office, or at school.

Now that I am older and have taken a primary role regarding my care, I have realized that I can do more advocacy for both myself and the diabetes community as a whole. I have always seen advocacy as something unreachable to a college student like me, but I have come to realize advocacy comes in many forms. While I may not be advocating every day on a federal or state level, anytime I educate others or demand the care I need in a school or healthcare setting, I am advocating for myself and others with diabetes.

The DPAC Policy Training Meeting

I had the opportunity to attend the very first Diabetes Patient Advocacy Coalition (DPAC) Policy Training meeting, along with more than 30 advocates from across the country. When I first found out I had the chance to go, I was immediately intimidated, as many of the attendees have years of experience with advocacy in either their personal or professional life. Upon arrival, I quickly realized that age and experience did not matter and that I had my own unique story to share. What stuck with me the most over the weekend was learning how to develop “my story”. My story of living with diabetes is completely my own. No one can discount my own experience, which made me realize that I had no reason to be nervous.

Emma Zgonc on Capital Hill

Saturday and Sunday were spent learning about policy issues that impact the diabetes community, social media, public speaker training, the ins-and-outs of a congressional office, along with many other ways to advocate. We learned about affordable insulin and the DSMT bill (HR 5768 and S 3366), the two issues we would later be advocating for with Congress on that Monday.

The Issues

In the past 15 years, the cost of insulin has nearly tripled. I have been fortunate to be able to afford insulin, but I know many are not and I often worry for when I have my own insurance. Currently, a month’s worth of insulin for me costs $1,200! This is a staggering amount, which causes many to be unable to afford it. I was so happy to have the opportunity to speak about the importance of insulin affordability on The Hill, but we need others to join this effort. Insulin affordability is a problem that impacts everyone with T1D and it is up to all of us to share our story in order to make change happen.

First DPAC Policy Training Meeting Attendees

I have always been on the quiet side and never thought I would be interested in a career in advocacy, but after attending the policy training meeting, I have found something that I am extremely passionate about! I have had so many loving people advocate for me, and it is now time for me to stand up and share my story and be a voice for those who can’t. I am excited to continue to advocate with DPAC on issues that matter to the diabetes community and share my experience with others who can help make a difference. You are never to old or young to advocate for change! My involvement with DPAC and the Policy Training meeting has given me the confidence to share my story.

About Emma

Emma Zgonc studies Sociology and is pursuing a Master of Global Health at Ohio University in Athens, OH. She will graduate in 2021. She was diagnosed with Type 1 diabetes at the age of 12. She is co-president of DOSES, OU’s CDN Chapter, a peer mentor for children with diabetes in the Athens area, and is a DPAC champion. She hopes to pursue a career in global health and advocate for those with diabetes and other chronic conditions worldwide.

Announcement: DPAC Policy Training Meeting Applications Are Now Being Accepted

DPAC is now accepting applications for the next DPAC Policy Training Meeting, which will take place in Washington, D.C. from April 30 to May 2, 2019. Individuals impacted by diabetes who have a passion for policy advocacy and wish to have advanced training are encouraged to apply.

 

DPAC held its first Policy Training meeting in October of 2018, which brought together advocates from all over the county.  This in-depth meeting will offer social media and public speaker training alongside education on policy issues our community currently faces and how to effectively advocate on a state and federal level. We’ll be bringing in experts and sharing best practices before we head up to Capitol Hill for Hill Day.

 Hill Day

Join your fellow DPAC advocates to meet with members of Congress and their staff, along with advocates from other organizations.  Rather than research funding (which is what JDRF and ADA do best, so why reinvent the wheel?!) meetings, this Hill Day’s focus will be on policy issues and upcoming bills in Congress. 

What’s Involved?

For those who have shown an interest in policy advocacy and are selected to attend, DPAC will provide travel and lodging to Washington, D.C. to attend the meeting. Tuesday and Wednesday will be intensive training days (sorry – no time to sightsee!). Thursday will be our Hill Day, and attendees will depart from the Hill to head back home.

What Comes Next?

The fun (and we hope it will be fun for attendees) doesn’t stop after the DPAC Policy Training Meeting. DPAC will be providing additional training and resources throughout 2019 to help these determined policy advocates in their own state. They may also be asked to speak in their state legislature (or come back to D.C.) on a diabetes issue. Diabetes policy advocacy isn’t a quick fix; we’re in this for the long-haul!

How Do I Apply?

Click here for the application.

Please take careful note of the application requirements and take your time answering the questions.

Applications will be accepted until FRIDAY, FEBRUARY 8th.

 

We will announce the DPAC Policy Training Meeting attendees the week of February 18th. 

 

We hope you’ll consider applying and joining us in Washington, D.C. to advocate for our community!

picture of clear test tubes

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.