DPAC

Guest Post: Claire Pegg on Being A DPAC Champion

I’m Claire Pegg and I’m a DPAC Champion.

I don’t quite know how to convey what that sentence means to me. I’ve had Type 1 diabetes for 22 years. I’ve helped diagnose friends and family with diabetes by recognizing familiar symptoms. I manage care for my dad who has Type 1 and is sinking deeper and deeper into dementia. I’ve spoken up when coworkers and podcasters and news reporters made diabetes jokes that perpetuate the stigma piled on top of a chronic disease that requires my attention most every minute of every day. I’ve grown more and more frustrated at the cost that I and so many others pay for medical care, devices, and prescriptions. 

But I’ve never had a goal on which to focus my passion and the expertise I’ve gained from managing my health for so long. I’ve written letters to my Representatives and Senators but without a specific action to request I felt like a little kid, banging on the door and asking, “Could…could you guys just make things a little easier for us…somehow?”

Enter the Diabetes Patient Advocacy Coalition. I honestly didn’t know anything about DPAC when I saw a social media post asking for people to apply to be DPAC Champions. I spent some time searching online, scrolling through Twitter feeds and inadvertently learning a lot about the Durham Performing Arts Center. I submitted my application and downloaded the DPAC app. Immediately, I found concrete actions I could take, like writing my Congressional Representative to ask for his support for a bill to improve access to diabetes training for Medicare patients. The specificity of this action thrilled me. No, it wasn’t a solution to every issue affecting people with diabetes, but it was a practical solution to a particular problem. That was right up my alley.

When the email came that let me know that I had been selected as a DPAC Champion, I was humbled and excited. It felt like maybe the missing piece that I had been looking for had fallen into place. Everything about this organization appealed to me. I watched as DPAC CEO Christel Marchand-Aprigliano discussed the rising cost of insulin on CSPAN and tuned in to the House and Senate hearings on insulin cost. This was a fight I could get behind wholeheartedly. While my insulin cost is moderately affordable at $500 per year, I was seeing people with diabetes on Facebook groups having to beg for insulin because they couldn’t afford the astronomical price they were being charged to stay alive.

I flew to Washington D.C. and began a fast-paced two day training session with 25 other DPAC Champions, some new and some who had attended the previous fall. I met people with diabetes and parents of people with diabetes. I met people who had lost family members to diabetes. I spent one session in a conference room listening to the music of Continuous Glucose Monitors going off after everyone’s trip through the hotel’s breakfast buffet. 

No judgmental heads turned at every beep or alarm, and my persistent low blood sugar alert resulted in a casual offering from everyone at my table of their emergency sugar on hand. I imagine it was like what kids who go to diabetes camp for the first time must experience. Having the thing about me that makes me different be shared with that large of a group was empowering and uplifting.

The training itself was a dream come true. My favorite new thing: specificity. We Champions were briefed on bills and actions we would be asking our Congressional Representatives and Senators to support. On a bill that would improve the Medicare Diabetes Self-Management Training (DSMT,) we learned what obstacles were keeping people from accessing this training and how the new bill would address those obstacles. We learned more about Rebate Reform and how it is a critical first step to solving soaring insulin prices. 

But most importantly, we learned that we were already experts. The daily, sometimes hourly attention I have paid to managing my health for the past 22 years, complete with mistakes and burnout and good care and bad care, has made me into an authority on living with diabetes. When someone wants to know why it’s important for a person with diabetes to have access to nutrition training or to a Continuous Glucose Monitor or why Walmart insulin is not a long-term solution to insulin prices, I am indeed an expert. My story and my experiences have made me into one. 

Knowing that the people we would be speaking to on Capitol Hill were not looking for a rehearsed presentation but instead wanted to hear our stories and understand what solutions would work for us was a freeing concept.

Once our training days were completed, we spent the third day on Capitol Hill. In groups of five or six, we visited the offices of our Representatives and Senators and asked for their support on the DSMT bill, Access to Affordable Insulin legislation, and for them to join or continue to support the Congressional Diabetes Caucus. Telling my story to my Representative’s Legislative Assistant and listening to him tell me of his parent and grandparent with diabetes and his and the Representative’s desire to be involved in supporting diabetes legislation was an amazing experience. 

I felt like I was making my voice heard, not only on my behalf but on behalf of all the people with diabetes who couldn’t be there with me. I’ve never felt so useful.

 

There was so much more to the DPAC Policy Training Meeting than what I’ve spoken about here. The amazing advocates I got to know, the goosebumps of walking down the marble corridors of Senate office buildings, and the feeling of finally having a chance to speak for change and for progress will stay with me for a very long time. My hope is to continue to grow in this advocacy, returning to it whenever I and my story are needed. If this sounds like that one thing that you have been looking for, keep an eye on the DPAC Twitter and Facebook accounts for the next call for DPAC Champion applications. Maybe I’ll see you in D.C. sometime soon.

 

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

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

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


What Did We Talk About?


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

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

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


Your Voice Matters


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

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

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

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

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

 

About
Stephen Shaul

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

In summary, Stephen rocks. 

Congratulations to our 2019 DPAC Patient Advisory Board

We would like to announce our 2019 DPAC Patient Advisory Board! 

  • Laurel Garrison (Co-chair)
  • Erin Bubb
  • Moira McCarthy Stanford
  • Mike Ratrie
  • Robert Parant
  • Daphne Ferdinand
  • Jennifer Hamm
  • Rachel Gartner Clark

All of the DPAC PAB members have intimate connections with the diabetes community and have a passion for policy advocacy. We are excited to have had so many wonderful candidates apply and look forward to building a vibrant community of advocates with our 2019 advisors!

Kentucky Legislature Passes Emergency Prescription Bill

Congratulations Kentuckians! Your advocacy has paid off. On March 26th, the Governor signed H.B. 64 into law. This law allows pharmacists to dispense the appropriate amount of prescription medications to patients who are experiencing an emergency situation and unable to get a prescription from their healthcare practitioner.  

Before this bill was passed, Kentucky pharmacists were only allowed to dispense emergency insulin in a preset, standardardized amount. But every person with diabetes has different needs, and that preset amount won’t be enough for everyone. Now, pharmacists are allowed to dispense the appropriate amount of insulin (and some other life-sustaining prescription medications) that a patient needs to get through an emergency situation. This is a great win for our community, and one more way we can ensure people who rely on insulin stay safe!

Thank you to everyone who sent a letter and shared DPAC’s call to action. Your efforts have paid off!

Diabetes Patient Assistance Programs: Insights and Recommendations for Increased Access

As prescription drug prices become unattainable for many, patient assistance programs (PAPs) are becoming increasingly important. As advocates for patients with diabetes, we wanted to learn more about how patients were using these resources. How are patients learning about PAPs? How is the application process affecting patients? Who is ultimately able to access PAPs?

PAPs exist to help people who have difficulty affording their prescription medications and/or other supplies. According to the Department of Health and Human Services Centers for Medicare and Medicaid Services (CMS), “pharmaceutical manufacturers may sponsor patient assistance programs (PAPs) that provide financial assistance […] to low income individuals to augment any existing prescription drug coverage.”1 PAPs have varying qualifications and requirements for admission that differ based on the PAP administrators’ preferences, the type of drug or supply needed, and the patient’s income level or household size, but all PAPs have one ultimate goal: to provide patients with the medications they need. Based on the conclusions from our survey, we have come up with recommendations for foundations who offer PAPs on how they can make their programs more accessible and more effective. PAPs serve an incredibly important purpose in our healthcare environment, and improvement in their operation will mean improved outcomes for the patient community.

Click below to download the full document and read the results of the survey. 

Amending the Rebate System – Take Action Now!

In February 2019, the Office of Inspector General and Department of Health and Human Services proposed to amend the safe harbor regulation on discounts. This amendment would remove safe harbor protection for rebates involving prescription pharmaceuticals and creation of new safe harbor protection for certain point-of-sale reductions in price on prescription pharmaceuticals and certain pharmacy benefit manager (PBM) service fees. Per the Health and Human Services department, the purpose of this proposed rule is to update the discount safe harbor to update the discount safe harbor to address the modern prescription drug distribution model and ensure safe harbor protections extend only to arrangements that present a low risk of harm to the Federal health care programs and beneficiaries.

Rebate Reform and Diabetes

Diabetes is both an individual diagnosis and a public health problem. Over 30.3 million Americans (over 9.4% of the population) have diabetes. People living with diabetes pay much more for their healthcare. People who have diabetes spend 2.3 times more on their health than people who do not have the disease. A good portion of what people with diabetes spend goes towards prescription pharmaceuticals. High costs make access to affordable prescription pharmaceuticals difficult for many people with diabetes, including those covered by Medicare Part D and Medicaid MCOs.

These changes to the rebate system would decrease overall costs to patients with diabetes. The proposed rule would change which actor in the pharmaceutical products chain assumes the burden of cost from the patient to insurance plans. This switch may lead to higher health plan premiums (estimates range from a $4 to $10/month increase), but for millions of Americans who have diabetes, the increased cost is more than offset by savings patients will see in their cost-sharing burden. This proposed rule would force insurance plans to act the way they are designed to be – the cumulative “pot” should be used to help those with the highest healthcare costs.

Cost-Sharing Savings

In our current system, health plans keep rebates throughout the phases of Medicare Part D coverage. Medicare Part D patients go through four different phases, and they have different cost burdens in every phase. The four phases are the deductible phase, the initial coverage phase, the coverage gap phase, and the catastrophic phase. Health plans retain a majority of rebates collected during the deductible, coverage gap, and catastrophic phases of the Part D benefit, even though plans are only responsible for covering a small portion of drug costs during these phases. The plans use the rebates to reduce premiums rather than reducing cost-sharing.

Patient cost-sharing savings will outweigh health plan premium increases. Many cost-sharing amounts are tied to the list price of prescription pharmaceuticals, but insurers are charged far less than list price for the drugs. This results in patients who greater health needs subsidizing insurers and “healthier” patients. This proposal would begin to put an end to this practice by forcing insurers to bear more of the list cost for drugs. This may result in slightly higher premiums as insurers seek to offset their increased cost burden, but the prescription drug savings for patients will be more than what they would likely be charged via their premiums.

Furthermore, Medicare Part D plan premiums will increase whether this rule is passed or not. However, the proposed rule would decrease the amount that premiums increase. The CMS Office of the Actuary (OACT) predicts that average Part D plan deductibles will increase over the next decade. With implementation of this proposed rule, premiums will likely rise less than if the rule were not implemented. In 2021, OACT predicts that average premiums will be about $460 without the proposed rule and $405 if it is implemented. The savings are even more clear by 2029, when OACT predicts premiums will be about $725 without the proposed rule and $580 if it is implemented.

Patients will be able to adhere to their treatment plan if they have lower cost-sharing obligations. Patients who have diabetes do not access their medications when the cost-sharing burden is high. A recent study found that patients with type 2 diabetes are more likely to adhere to prescribed medication when they have lower copayments. Even a cost as low as a $5 copay can have an effect on adherence to diabetes treatments. When people with diabetes cannot access their medicines and are less adherent to prescribed medication, they have higher medical spending because of increased doctor visits, hospitalizations, and treatment of complications.

Non-Medical Switching and Diabetes

Non-medical switching disrupts patient care, increases out-of-pocket costs, and often has negative consequences such as: new symptoms and side effects, increased frustration, and harmful medication reactions. Additionally, this also often does not result in any cost savings for the patient or insurer, but instead causes an increase in doctor’s visits, hospitalizations and ER visits in many states. 

"Non-Medical switching is like playing Roulette with patient’s lives. Medications are not “one size fits all." My son, diagnosed with type 1 diabetes, had a severe reaction to the insulin our insurance switched him to. This is an unsafe practice and needs to stop!"

Non-medical switching simply doesn’t make any sense either financially or morally. Financially, it may save the insurer money in the very short term, but only by moving costs onto patients when they have to pay for additional doctor visits and other services to switch to the new drug or device. And morally, it’s not right for an insurance company to interfere in the decisions a patient makes with their healthcare team. Treatment decisions are not made lightly, and when patients and their healthcare teams aren’t listened to, we don’t get the care we deserve. Diabetes management varies greatly from person to person, so treating patients like we’re all the same simply does not work.

For patients with diabetes, a change in medication can result in unmanageable fluctuations in insulin, increased out-of-pocket costs, and additional visits to their physician. The infographic below displays an example of a patient’s frustrations.

What is Non-Medical Switching?

As a way to increase profits, health insurers have been restricting formularies, and imposing benefit changes- often at the expense of the patient. For patients with chronic conditions, like diabetes, this means an abrupt change in their treatment plan can occur and disrupt their medical stability. For patients with diabetes, this treatment plan was typically hard won, and unique to them. A seemingly ‘simple’ change in formulary can cause life-threatening alterations to the insulin levels of a patient with diabetes.

However, an insurer may opt in to non-medical switching, sacrificing a patient’s well-being, and abandon a successful therapy for one that costs their health plan less. Health plans can execute non-medical switching in a multitude of ways, including eliminating the drug from their formularies, or adding additional out-of-pocket costs to the patient via changing the drug’s coverage tier.

A recent study completed by the Alliance for Patient Access (AfPA) states:

Nearly 40 percent of patients (38%) reported that the new medicine was not as effective as the previous one, with more than one in 10 saying it “didn’t work at all.”

Failure to Communicate

In the occurrence of non-medical switching, patients often find themselves uninformed. 48% of patients state that they found out about the change to their prescription when at the pharmacy where they went to pick up their medication(s). This causes a decreased ability for proper disease management; patients are potentially unaware of possible drug interactions, new side effects, and are at risk for the emergence of previously relieved symptoms. In fact, AfPA found that 74% of non-medical switches occurred without the patient’s health care provider knowing. In fact, recent research shows that these unbeknownst changes can disrupt a patient’s health care to an extreme- resulting in them ‘giving up’ and deciding to stop taking their medication completely.

For diabetes, where individual treatment is key to disease management, eliminating options can cause a dangerous limitation to patient treatment. When a patient is faced with losing access to their life-stabilizing treatments, they lose the ability to control their condition, causing new symptoms and side effects. This then leads to an increase in lab testing, hospitalizations, physician visits, and, for diabetics, a higher chance of DKA. Determining the proper treatment plan is often long and frustrating. A patient from the recent AfPA study states “It literally had taken us, my doctor and I, years up to that point to find the right medicine that worked for my issues, and I was on it barely a year before insurance decided to take it away from me.” 

Placing restrictions on non-medical switching can protect patient health and add value to the patient-physician relationship.

Watch the short video below to learn more about how non-medical switching impacts diabetes.

Thankfully, states have become increasingly aware of the issue, resulting in recent laws being passed in Illinois, and Maine- with more to come! Until then, however, many are forced to fight for their medications- or use those that are not right for them or their families. 

"For my daughter, one type of rapid acting insulin simply does not match her well. It causes atrophy quickly. We’ve known this for years. But now thanks to non-medical switching, she can ONLY get that kind of insulin that does not work well with her. It’s infuriating. Her doctors know and agree with her. Her CDE does too. But some person at a desk made a deal and so she must try to live with the type that does not work well for her."

Moira McCarthy- DPAC Champion Tweet

Become an Advocate

Interested in advocating against non-medical switching in your state? Click here to learn more about becoming an advocate!

Ask your Representative to Join the Congressional Diabetes Caucus

Originally formed in 1996, the bipartisan Congressional Diabetes Caucus has grown into the largest and one of the most influential member organizations of Capital Hill. The Congressional Diabetes Caucus boasts over 350 members that work together to pursue common legislative goals to promote the well-being of those affected by diabetes. The current mission of the Congressional Diabetes Caucus is to educate members of Congress and their staff about diabetes and to support legislative activities that would improve diabetes research, education and treatment.

Within the 116th Congress, the caucus aims to:

  • Urge relevant authorizing committees to support diabetes programs and patient care through letters and testimony.
  • Hold informational events for Members and staff here in DC to increase awareness of the disease among Members.
  • Ensure diabetes is adequately addressed in all relevant legislation and regulations.
  • Continue to build the House Congressional Diabetes Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.

The Congressional Diabetes Caucus has contributed to legislation providing Medicare coverage for glucose monitors, testing strips, and additional diabetes education.

Recently, the caucus has focused on access to affordable insulin.  The current co-chairs Tom Reed (R-NY) and Diana DeGette (D-CO) lead a discussion that involved pharmacy benefit managers, health insurers, patient opinions, pharmacies, insulin providers, and more. This extended study led to the production of the 2018 report on insulin pricing. Read our full explanation of the report here.

The Congressional Diabetes Caucus is run by and includes people who are very passionate about getting the best possible care and tools to people with diabetes. When we’re considering policy or legislation, the Caucus leadership is our first stop – they know who will be the most effective advocates and how to reach out to them. And members of the Caucus are always ready to listen to patient opinions on different bills, which shows they care about our community.

Do you know if your representative is part of the Congressional Diabetes Caucus? They should be! Here’s an opportunity to find out and thank them – or ask them to join!

 

Is Your Representative on the Congressional Diabetes Caucus?

There has never been a better time to ensure that your representative is a member of the Congressional Diabetes Caucus. Our community has a lot at stake: prescription drug access, rebate reform, and much more - we need everyone involved! If your representative isn't a part of the Caucus, here's your chance to tell them to join - and if they are a member, here's your chance to thank them!

Marylanders! Ask your senator to support S.B. 410!

In early February, Senators Beidle, Augustine, Elfreth, Feldman, Hayes, Kelley, Klausmeier, Kramer, Reilly, and Washington introduced Senate Bill 410, an act concerning health insurance, coverage for insulin, and a prohibition on deductible, copayment, and coinsurance. If signed into law, this bill would drastically increase the quality of life for people in Maryland who are living with diabetes.

The purpose of the bill is 

“…for prohibiting, except under certain circumstances, certain insurers, nonprofit health service plans, and health maintenance organizations from imposing a deductible, copayment, or coinsurance requirement on insulin [….]” 

The law would have two main outcomes: first, more coverage for services and supplies without higher cost-sharing requirements, and second, an exemption for insulin and test strips from some cost-sharing requirements in plans that are not high-deductible plans.

More Coverage for Services and Supplies

The first part of S.B. 410 would require insurance companies and health service plans to provide coverage for people with diabetes to access all medically appropriate diabetes equipment, supplies, and outpatient services (like diabetes self-management training and medical nutrition therapy) that is prescribed by the patient’s healthcare team. It also would ensure that the annual deductibles or coinsurance requirements for the coverage required for these services and supplies is not higher just because insurers have to cover these supplies and services. This section would help ensure that people who have diabetes will not be stuck paying high prices out of pocket for these essential treatments and trainings because their insurance company would be required to cover them.

Exempt Insulin and Test Strips

The second part of S.B. 410 would exempt insulin and diabetes test strips from a patient’s deductible, copayment, or coinsurance requirement if the patient is not in a high deductible plan. While we’d prefer that the exemption apply to all insurance plans (including high deductible health insurance plans), this measure would be a huge step forward in increasing access to insulin and test strips for many people living with diabetes in Maryland. As all people affected by diabetes know, access to these supplies is absolutely necessary for survival and health.

If the bill passes, it would go into effect quickly, on January 1st, 2020. Ask your senator to support S.B. 410 today to increase access for all Marylanders who have diabetes!

Click here to send a letter to your senator!

Announcing the April 2019 Policy Training Meeting Attendees!

We are pleased to announce the attendees for the April 2019 Policy Training Meeting in Washington, DC!

These individuals will be attending an in-depth issue advocacy training and representing DPAC on May 2nd for a day advocating on Capitol Hill.  They will also be participating in a DPAC hosted Congressional Briefing breakfast.   Along with members of our DPAC Patient Advisory Board and other DPAC Champions, we’ll be welcoming:

Cindy C., NY

Sarah B., NC

Michele W., CA

Alicia W., NY

Kasey C., TX

Robert P., NY

Claire P., CO

Zoe H., PA

Michelle B., WI

Mike B., IL

Stacey D., NY

Jessica L., NC

Trip S., GA

We want to sincerely thank everybody who applied – we had many amazing advocates to choose from! There will be additional opportunities to represent DPAC at these programs and others this year!

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