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!

The Slow Pandemic

It is an understatement to say the pandemic has changed life as we know it, even more so as our community is among those at greater

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Know Your Issue: Spread Pricing

Pharmacy Benefit Managers (PBMs) are good at making something out of nothing. We’ve seen them turn a profit through drug rebates, accumulator adjustment programs, clawbacks,

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Insulin pen.

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!

The Senate Finance Drug Pricing Hearing Debrief

Tuesday, February 26th saw the highly anticipated Drug Pricing Hearing, as CEOs from seven different leading pharmaceutical companies presented before the Senate Finance Committee. These witnesses represented AbbVie, AstraZeneca, Bristol-Myers Squibb Co, Johnson & Johnson, Merck, Pfizer, and Sanofi and were called in to explain their drug pricing policies, as lawmakers criticized the process.

What You Missed

Pharmaceutical executives acknowledged that their prices are high for many patients, but they highlighted the insurance industry, government, and middlemen, known as pharmacy benefit managers, as causative agents. They each also briefly acknowledged that they have some role to play in lowering drug prices and out-of-pocket costs, but they defended their industry by turning the spotlight on their multibillion-dollar investments in research. These executives explained that the list prices they set for drugs are not what they are actually paid by insurance companies or PBMs. Read a full summary of the hearing here.

Yes or No

Many of the questions asked during the hearing required simple ‘yes’ or ‘no’ answers, with further discussion prevented by the senators. These parts of the hearing were generally unproductive, as the healthcare system is a complex entity with many moving pieces. Yes or no questions simply do not allow for adequate explanation from the CEOs and Senators.

Tax Break

Companies were asked several times about the usage of their tax breaks from the last Congress. Some Senators wanted to prove a point- that the tax law was largely unhelpful to regular Americans- and others wanted to know how much of the tax break went to lowering actual drug list price. 

The Tax Cuts and Jobs Act of 2017 was approved by the House Ways and Means Committee on November 9, 2017 and was passed in December 2017 by the Republican-led Congress as the largest piece of tax reform in decades. The TCJA had a wide reach, including introducing a flat corporate tax rate of 21% to pharmacy businesses, a wide variety of credit and deductions, increased expensing, saving pharmaceutical companies billions. The Act also reduced tax rates for other businesses and individuals, simplified personal tax, and repealed the individual mandate of the Affordable Care Act.

Patent System

Some of the Senators (Cornyn-R, Texas) brought up the idea of reforming the patent system so that drug formulas cannot continue to be re-patented in a seemingly endless loop. Gonzalez discussed how patents on Humira (AbbVie), for instance, are not simply on the formula of the drug and how they license the formula of the drug so other companies can produce it as well. Currently, patents protect drugs from copycats for 20 years upon the invention of the drug. This timespan includes the time spent in FDA trials, a process that takes an average of 9 years. 

A patent is not the only option for drug producers though. For new drugs, exclusivity can be granted as a period of time in which a brand-name drug is protected from generic competition and is offered exclusive marketing rights. Exclusivity can vary from 6 months to 7 years with additional extension possibilities, and attaches upon the approval of the drug product. Patents and exclusivity may or may not run concurrently, but the exclusivity clause will not add additional time to the patent life. However, current patent law allows drug companies to file patent after patent to extend the life of their exclusivity, and generic drugs can be challenged in court. Litigation via these two channels can cause the production of generics to be delayed by years. Click to learn more about patents and exclusivity from the FDA.

Rebate Reform

Some of the presenting pharmaceutical executives stated that they support the administrative proposal for rebate reform, which would change the current system in which drug prices are set using secret rebates negotiated by PBMs. “The change would make those rebates illegal and force pharmacy benefit managers to instead negotiate discounts upfront so that people will get the discounts at the pharmacy counter even if they haven’t yet met their deductible.”


International Pricing Index

Many Senators, especially Cardin (D- Maryland) and Cassidy (R- Louisiana), brought up the International Pricing Index. The IPI was proposed by the administration at the end of last year. It aims to tie American drug prices with international prices by setting a Target Price driven by the international pricing index, in hopes to lower the amount Medicare, and patients, pay for drugs. According to the Centers for Medicare & Medicaid Services (CMS), “the IPI Model would test whether increasing competition for private-sector vendors to negotiate drug prices, and aligning Medicare payments for drugs with prices that are paid in foreign countries, improves beneficiary access and quality of care while reducing expenditures.” The IPI is projected to start in Spring 2020 and save American taxpayers and patients $17.2 billion over five years.

Wyden’s Pledge

Wyden (D- Oregon) wanted each pharmaceutical executive to pledge that if rebates were eliminated from the market, the savings would go towards lowering prices. The companies have ten days to send an answer to his office, and several of the executives stated that they would have no problem signing such a pledge.

The Takeaway

Follow up from this hearing is key and Grassley (R-Iowa) promised he would have additional hearings on this issue. Himself and Wyden (D-Oregon) have stated the companies would be asked to present again on Capital Hill for further hearings.

Are You A Passionate Diabetes Advocate? Join the DPAC Patient Advisory Board!

What is the DPAC Patient Advisory Board?

The DPAC Patient Advisory Board (PAB) is a diverse group of people from the diabetes community who support DPAC’s mission and further its goals. From identifying and weighing in on diabetes policy advocacy issues on a federal and state level to advising on educational training content, the Diabetes Patient Advocacy Coalition’s PAB plays an integral role in ensuring the diabetes patients’ voices are heard. These members will represent DPAC at policy meetings, testimonies, and events that need a personal diabetes perspective.  

DPAC was founded by patients in the diabetes community to ensure that there was a trusted voice that represented all 30.3 million American families impacted by diabetes in the United States.  It is important to DPAC that all facets of our community are represented, since people being personally invested in our voice is essential.  Drawing from all corners of our community, we seek parents, patients, and significant others from all types of diabetes. 

The diverse viewpoints from the DPAC PAB members will ensure that DPAC represents all voices of the diabetes community. The input from the PAB will help ensure that DPAC continues to be the foremost organization in the diabetes advocacy space.

A bunch of hands touching


How Can You Get Involved?

We’re looking for people to join the DPAC PAB now! You can apply by filling out a short application, which will ask for you to answer a few questions. Applications are open between now and March 27, 2019. 

In order to ensure transparency and promote DPAC as the trusted patient advocacy voice, there are a few requirements for being a PAB member. If selected, you will: 

  • Commit a minimum of 2-5 hours per month of your time
  • Represent the faces and voices of our community
  • Attend online PAB meetings monthly (will transition to bi-monthly once in working groups)
  • Attend a DPAC Policy Training Meeting in D.C. (costs are covered)
  • Promote, represent, and advocate for DPAC’s issues
  • Be willing to share your personal story – whether that be through a blog post for DPAC’s website, or other ways via social media
  • Work collaboratively with staff and other members on particular issues, both State and Federal
  • Be active in the PAB online group forum and be willing to add to group conversation
  • Participate in advanced advocacy training either online or in person
  • Be willing to engage and promote DPAC on social media
  • Have a willingness to participate as a speaker or on a webinar regarding a topic that you are familiar with
  • Be independent from conflicting diabetes advocacy messaging. No PAB member may be an employee/contractor of another diabetes non-profit, corporation, or movement that influences the diabetes community in any way to ensure there are no conflicts of interest
  • Be a registered voter in the United States.

See the DPAC Patient Advisory Board application for details on the requirements and apply today! (You can upload your resume, letters of recommendation, and a cover letter in the application.)

We know that as a strong community, we’ve already done so much.

Let’s make sure that our policy makers continue to hear from us!