Blog

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 risk. The concern mounts as initial data confirm what was predicted – those with chronic conditions are more likely to be hospitalized and in the ICU as a result of COVID-19.1
 
There are negatives everywhere we look. I’m writing this to share with you one positive for us amidst the global crisis: chronic diseases have the potential to gain new attention post-COVID.
 
We’ve been dealing with a slow pandemic for decades, and that is diabetes. A pandemic is defined as “an outbreak of a disease that occurs over a wide geographic area and affects an exceptionally high proportion of the population.”2 Of course, it’s implied that this disease spreads rapidly from person to person. Ignoring for a moment that diabetes isn’t contagious, let’s quickly take a look at the data for diabetes to understand why the word “pandemic” is
otherwise justifiable.
 
Below is a chart depicting the increase in the number of Americans with diabetes from 1958 – 2015.3 It reflects a trend that is being replicated worldwide.
 

Type 2 diabetes is associated with the majority of this growth. However, the jump in instances is type agnostic; the Journal of Molecular Endocrinology cites several studies that indicate Type 1 diabetes has been on the rise globally since the 1990s.4

Over 30 million people in the United States alone have been diagnosed with diabetes – that’s more than 1 in 10 Americans. There are an additional 84 million adults at risk of developing this disease – that’s another 4 in 10 Americans. (This number is likely even higher since our national population of 328.2 million includes children and these statistics do not).

If over half of our country either has diabetes or is at risk of developing diabetes, we’ve been staring directly into the face of a pandemic for years now. The “slow” aspect, relatively speaking, has tricked us into delaying, denying, blaming, shaming, and more. It has not, in large measure, kicked us into action. But a true pandemic just might.

Leaders across America are understanding what we’ve long known: 1) chronic conditions put people at greater risk of illness and death; and 2) we have a significant proportion of the population who fall into this category – a number that grows every day.

Congress often likes to think in terms of economic impact, and as fiscal stewards of our country, that makes sense. Members know all too well that when it comes to diabetes, the financials are devastating. According to the American Diabetes Association, 1 in every 7 health care dollars is spent treating diabetes and its complications; the overall cost has risen 26% from 2012 to 2017.5

This conversation on spending typically goes in any number of directions – how we allocate, how we support, how we educate, how we treat, and how we prevent. Now the conversation includes how we protect.

To that end, my hope is that policy makers take diabetes more seriously in the months ahead. The human toll is being exposed like never before. Families and individuals impacted by diabetes are now scared for their lives.

It’s one example that the disease does change your life forever in many ways, as more are coming to understand. People everywhere are learning from COVID-19 that diabetes is complex, life altering, and pervasive. It has desperately needed attention, and now we have the world’s ear. Can we lead a new discussion about a new era of focus as the year goes on and tie this to public decisions? I say yes.

As we take care of each other, support our community, and help one another through this, DPAC is also poised to send a strong message to lawmakers as they return to state Capitols and to Congress: Let’s get serious about this. We need action.

– Julie Babbage, CEO, DPAC

COVID-19 Updates from Diabetes Pharmaceutical & Medical Device Manufacturers

At a time when life is uncertain for so many, especially our diabetes community, we want to make sure you have a centralized source for diabetes information and patient assistance – in response to COVID-19 or otherwise.

Best advice during COVID-19: plan ahead! It could take extra time to get prescriptions filled as possible delays may result in pharmacies being temporarily out of stock.

Stewart Perry, Vice Chair of DPAC said recently (and if you’ve met him, you know he says this often): “Never, never, never, never, NEVER ration your insulin. Ever. If you are struggling, reach out to us, to the broader community, to social media channels. We are all in this together, and no one should ever have to risk his or her life – or the lives of family members – because they cannot get insulin.”

All three major manufacturers have reported that they maintain a strong supply of insulin despite the pandemic. They’ve also said that help is available for people that need it – we want to be sure you know where to find it! Below are statements and information we’ve gathered from diabetes pharmaceutical & medical device manufacturers.

CHANGES TO ASSISTANCE IN LIGHT OF COVID-19

Abbott: On April 8, Abbott announced that the FDA has approved the FreeStyle Libre 14 day CGM system for use in the hospital setting during the COVID-19 pandemic. This will permit frontline healthcare workers to remotely monitor patients with diabetes receiving inpatient care by assessing real-time glucose levels and glucose history. To help hospitals and medical centers in COVID-19 outbreak hotspots ramp up access to the technology, Abbott will donate 25,000
FreeStyle Libre 14 day sensors in partnership with the American Diabetes Association (ADA), Insulin for Life USA and Diabetes Disaster Response Coalition. For more information about using FreeStyle Libre 14 day system in the hospital, please contact 1-800-401-1183. For the full press release: https://abbott.mediaroom.com/2020-04-08-Abbotts-FreeStyle-R-Libre-14-Day-System-Now-Available-in-U-S-for-Hospitalized-Patients-with-Diabetes-During-COVID-19-Pandemic

Novo Nordisk: Starting April 13, people with diabetes using Novo Nordisk insulin who have lost health insurance coverage because of a change in job status due to COVID-19 may be eligible to receive insulin free-of charge for 90 days. We will make this available through the end of the year as we monitor how the pandemic continues to affect our nation. If someone is facing a loss of healthcare benefits, Novo Nordisk will not require documented proof of income to qualify.
We will require documentation showing loss of healthcare benefits through job termination notice or job status change, or proof that COBRA benefits are being offered. And, in situations where required documentation is not quickly accessible and there is a risk of rationing, we have an Immediate Supply option available that may help by providing what amounts to a free, one month supply (up to three vials or two packs of pens) for many. Assistance can be extended to the end of 2020, after the 90-day window, for otherwise eligible patients who have been denied Medicaid coverage. For more information visit https://www.novonordiskus.com/media/COVID19.html

Most importantly, whether COVID-19 related or not, NovoCare® is our one-stop resource to help people with diabetes to identify long-term solutions based on their needs.

My$99Insulin: all patients may be eligible to get a 30-day supply of a combination of Novo Nordisk insulin products (up to 3 vials or 2 packs of pens) for $99 for up to 12 months. Register at https://www.novocare.com/insulin/my99insulin.html.
Contact NovoCare® at www.NovoCare.com and through live support at the following phone numbers: Diabetes: 844-Novo4Me (844-668-6463, M-F, 8:30am-6:00pm); Obesity: 888-809-3942 (M-F, 8:00am-8:00pm).

Lilly: In response to the crisis caused by COVID-19, Lilly is introducing the Lilly Insulin Value Program, allowing anyone with commercial insurance and those without insurance to fill their monthly prescription of Lilly insulin for $35. The Lilly Diabetes Solution Center, through which representatives can direct people to the $35 savings card, as well as affordability options that may reduce their out-of-pocket costs further – such as free insulin for people with minimal income, or no income at all, that has been donated by Lilly to non-profit organizations.

We have options that cover a variety of personal circumstances, including how to access free insulin if your income is limited or has gone away completely. The calls are simple, the average conversation is about 10 minutes, and there’s no paperwork to fill out. We have operators who can take calls in Spanish and we can translate information into about 40 languages. Please call us. We want to help.
Contact the Solution Center at (833) 808-1234. The Solution Center is open 8 am to 8 pm (EDT) Monday through Friday.

Xeris: Xeris Pharmaceuticals, Inc. announced a limited-time $0 copay offering for commercially eligible patients effective now through April 30, 2020 as a response to the COVID-19 pandemic. “In this time of uncertainty, people with diabetes need a glucagon product they can easily administer if their blood sugar goes severely low. Unfortunately, most people with diabetes on insulin either don’t have glucagon at home or have an antiquated glucagon kit that studies have
shown very few people can correctly administer especially under duress. To quickly change this paradigm and relieve the stress of financial barriers, we are offering a $0 copay card through the end of April. Simply put, anyone with commercial insurance that gets a prescription for Gvoke PFS will pay $0 out of pocket,” said Paul R. Edick, Chairman and CEO of Xeris.

“Given that the U.S. healthcare system is being overwhelmed with the COVID-19 crisis, access to hospitals may be limited in the event of severe low blood sugar requiring rescue. Therefore, people with diabetes need access to a ready-to-use glucagon option they can use correctly… In addition to having Gvoke PFS available at the chain and local pharmacies, we have a home delivery option through PillPack by Amazon Pharmacy.” Read more at:
https://www.xerispharma.com/api/files/834

INFORMATION AND EXISTING RESOURCES FROM DIABETES-RELATED COMPANIES

Ascensia: At PHC Group and Ascensia Diabetes Care, the health and safety of our customers, employees and the patients we serve is our number one priority. At present, there appears to be no immediate impact on the supply of our test strips and meters, and we do not anticipate any short-term issues related to the supply of these products due to COVID-19.

Nonetheless, we are beginning to experience some transportation challenges, with enhanced screening putting pressure on road shipments at borders and the decline in the number of commercial flights affecting air freight availability. Although these are not directly impacting our ability to supply products, they may have an impact on supply in certain markets depending on how long we experience these limitations.

However, we have solid business continuity plans in place to manage our global supply and are working closely with our partners to ensure we are able to maintain production and supply of our strips and meters to all countries.

AstraZeneca: AstraZeneca is responding to the COVID-19 (novel coronavirus) outbreak, consistent with our values to follow the science, put patients first and do the right thing. Our priorities are to ensure the continued supply of our medicines to patients, and to safeguard the health and wellbeing of all our employees and communities. Our medicines supply chain is robust, and we continue to monitor the situation closely. Our stringent quality management system ensures the safety, quality and efficacy of all our medicines at all times. The company is donating nine million face masks to support healthcare workers around the world as they respond to the COVID-19 (novel coronavirus) global pandemic. AstraZeneca has
partnered with the World Economic Forum’s COVID Action Platform, created with the support of the World Health Organisation, to identify countries in greatest need. Italy was selected to receive the first shipments the week of March 24, with other countries to follow.

Boehringer Ingelheim: The increasing spread of COVID-19 has an impact on all areas of life. As a global company with more than 50,000 employees across the globe, we have taken many measures to protect the health of our employees and ensure the continued supply of our medicines to the people who need them. Boehringer Ingelheim is also engaged in various initiatives to contain and cope with the global spread of COVID-19.

The BI Cares Patient Assistance Program is a charitable program provided by the Boehringer Ingelheim Cares Foundation (BI Cares) that provides Boehringer Ingelheim medicines free of charge to uninsured and underinsured US patients who meet our eligibility requirements. Our goal is to invest our resources to help the most patients with the greatest need, including senior citizens and families with limited incomes.

To call the BI Cares Patient Assistance Program dial 1-800-556-8317 toll-free Monday – Friday from 8:30 a.m. – 6:00 p.m EST. To check eligibility and apply for the program, visit https://www.boehringer-ingelheim.us/our-responsibility/patient-assistance-program

Dexcom: At Dexcom, we are tracking the Coronavirus situation closely with three key priorities in mind: keeping our employees safe; serving our patients; and doing what we can to minimize the spread in our community. The State of California, headquarters for Dexcom, recently issued a stay-at-home mandate. As a healthcare organization, Dexcom is as an “essential business” and, thus, exempted from the mandate. We have reviewed our supply chain in detail, and while we will continue to monitor it closely, at this moment there are no interruptions to Dexcom’s ability to produce and supply product as a result of the Coronavirus. Additionally, we continue to take every step to ensure every single one of our products that goes out the door meets the highest safety standards. We are committed to communicating with our customers as the situation evolves.

Insulet: Insulet continues to vigilantly monitor and manage the global impact of the Coronavirus outbreak and we do not anticipate any product supply issues at this time. We have contingency plans in place and have built inventory and redundancy throughout our supply chain that is designed to mitigate against any supply shortages. Our global manufacturing facilities are running and producing Pods. In addition, our automated manufacturing facility in the U.S. is providing redundancy, risk mitigation, and additional capacity. Some have asked about ordering more supplies to stock up for the coronavirus. Due to the need for a prescription for your specific quantity needs, we recommend that you speak to your healthcare provider.

Contact the Customer Care team with questions at 1(800) 591-3455. If you or someone you care for is currently using the Omnipod System and may need financial assistance, contact us online or call us at 800-591-3455 and select Option 3 for billing assistance.

Merck: While supply and demand vary by product, there are not any current impacts from COVID-19 on the production and supply of our medicines and vaccines for the U.S. However, we are working to assess an increase in demand for our pneumococcal vaccine. As communities around our manufacturing facilities are impacted by various social distancing measures implemented by authorities, we will assess the impact of reduced staffing levels on our supply
chains.

The Merck Access Program which provides information about insurance coverage and available financial assistance options for certain Merck products continues to operate during this crisis (merckaccessprogram.com). Merck Patient Assistance Program continues to operate as well (merckhelps.com). This program provides certain medicines and adult vaccines, for free, for people who may qualify.

Sanofi: In June 2019, Sanofi expanded its Insulins Valyou Savings Program so people with diabetes can pay $99 to access their Sanofi insulins with a valid prescription for up to 10 boxes of pens and/or 10 mL vials per month. If you are taking more than one insulin manufactured by Sanofi, you still pay $99 for your monthly supply for any Sanofi Insulins (up to 10 vials or packs of pens per fill). In order for you to pay $99 per month, you must fill all your Sanofi Insulin prescriptions at the same time, together each month. For more information or to learn how to access this program, visit www.InsulinsValYOU.com.

Sanofi continues to offer other resources to make insulins more accessible including co-pay cards which may limit out-of-pocket expenses sometimes to $0 for all commercially insured patients regardless of income level. In addition, Sanofi offers assistance programs that provide medications, including insulin, at no charge for qualified low-income, uninsured patients through the patient assistance component of the Sanofi Patient Connection program. Contact the Sanofi Patient Connection at (888) 847-4877 or visit http://www.sanofipatientconnection.com/

Janssen / Johnson & Johnson: Our team at Johnson & Johnson has robust business continuity plans in place across its global supply chain network to prepare for unforeseen events like the coronavirus outbreak. These steps include maintaining critical inventory at major distribution centers away from high-risk areas and working with external suppliers to support our preparedness plans. We are closely monitoring product demand and supply levels across our
global network to ensure adequate and effective distribution and are working diligently to meet patient, customer and consumer needs. While this remains a dynamic situation, we do not foresee pharmaceutical supply or medical device interruptions related to COVID-19 at this time.

INFORMATION FROM CARDIOVASCULAR PHARMACEUTICAL MANUFACTURERS

Amarin: Approximately 10 million people with diabetes are at elevated risk of cardiovascular disease, the number one killer of men and women in the United States. To directly support patient care, Amarin plans to continue to provide digital and internet-based educational materials and copay cards and will continue to ship samples. The company responded to questions regarding whether its supply chain for Vascepa is likely to be significantly impacted by COVID-19. Amarin’s supply chain is diversified and therefore mitigates geographical risks. None of Amarin’s manufacturing is conducted in China. Furthermore, Amarin has built significant stockpiles of VASCEPA in the United States.

 

– Julie Babbage, CEO, DPAC

Julie Babbage Appointed New DPAC CEO

FOR IMMEDIATE RELEASE 

 

Lexington, Kentucky, Dec. 9, 2019 – DPAC today announced the appointment of Julie Babbage, of Babbage Cofounder as the new CEO. Julie will be assuming responsibilities immediately, according to Mr. Stewart Perry, DPAC Vice-Chair, and acting interim CEO. In addition, DPAC has retained the management services of Babbage Cofounder Services that consolidate core, administrative functions so that leadership can focus more on growth and vision of DPAC. 

Julie stated, “There is a tremendous opportunity in this next chapter to grow our identity, our partnerships, our reach, and the organization as a whole. Diabetes is personal to each of us in DPAC. I am inspired by our Champions, the members of our community, who carry forth the mission of DPAC each day.” 

DPAC has been a strong, consistent voice for diabetes patients and their families. Stewart Perry Vice Chair of the Board and interim CEO stated “I can think of no firm more dedicated to helping people with diabetes than Babbage Cofounder, and Julie will help to continue the work that Christel Aprigliano former CEO and founder started. The board, with Julie’s leadership, looks forward to DPAC’s growth and leadership in the diabetes space.

Julie is Babbage Cofounder’s Washington, DC lead and also works on state issues. In addition to years of legislative advocacy, Julie brings bipartisan Hill experience and relationships to DPAC. She spent two years in Deloitte’s federal consulting practice helping implement enterprise-wide transformations within several government agencies. Her interest in government began early, and she interned during college at both national and international levels – U.S. House, U.S. Senate, and for the U.S. Ambassador to England through the state department. Julie is a graduate of Vanderbilt University.

About Babbage Cofounder Babbage Cofounder is a government affairs firm with a bipartisan philosophy that includes grassroots, grass tips, like- minded or “like-missioned” associations, and leaders working in connected roles. The firm is widely recognized as a leader in advocacy in Kentucky and surrounding states. During the past dozen years Babbage has been a steady, passionate voice for diabetes action. This work includes coaching health care and medical leaders to elevate professional efforts to manage, learn about and eventually cure diabetes – generating support across the spectrum for significant change and results.

About Diabetes Patient Advocacy Coalition (DPAC) The Diabetes Patient Advocacy Coalition (DPAC) a 501(c)(4) non-partisan organization amplifying diabetes patient voice through an alliance of people with diabetes, caregivers, patient advocates, health professionals, disease organizations and companies working collaboratively to promote and support public policy initiatives to improve the health of people with diabetes. DPAC seeks to ensure the safety and quality of medications, devices, and services; and access to care for all 30.3 million Americans with diabetes. 

New Yorkers could Ban Accumulator Adjustment Programs!

Accumulator adjustment programs (also known as copay accumulator programs and co-pay adjustment policies) are programs that some insurance plans are instituting that 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 out-of-pocket spending requirement. Insurance plans have been implementing accumulator adjustment programs without consumer notice, which leaves patients to find out about this practice only after they incur steep prescription drug and device cost sharing mid-year. Beyond being unfair to patient consumers, these programs will have a negative impact on individual and public health.

Accumulator Adjustment Programs and Diabetes

Insulin pen.

About 2,047,000 people in New York (roughly 12.2% of the state adult population) have diabetes. People who have diabetes spend more than double on their health than people without diabetes. It makes sense, then, that people with diabetes have trouble accessing 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.

Copay cards enable patients to access their medication. People with diabetes expect to be able to use copay cards because of how commonplace they are, and many people budget their healthcare expenses for the year based on the availability of copay cards. Additionally, a person with diabetes may not be able to switch medicines in order to get a cheaper price. Among brands with copay coupons, a majority (51%) are for drugs with no generic substitute – including 12% for drugs with no close therapeutic substitute of any kind.

A medical professional holding a prescription. New York bills A. 8246 / S. 6303 ban accumulator adjustment programs by requiring insurance plans to apply payments from third parties on a patient’s behalf to apply to the patient’s deductible, copayment, coinsurance, and out-of-pocket maximum. The bills apply to all insurance plans sold in the state.

NY S.6303 was introduced by Senator Rivera on June 3rd. It was moved to the Rules Committee that same day. The Assembly companion bill, A. 8246, was introduced by Assemblyman Gottfried on Monday, and was referred to the Insurance Committee. The bills are also positive bans that require insurance plans to apply payments from third parties on a patient’s behalf to apply to the patient’s deductible, copayment, coinsurance, and out-of-pocket maximum. The ban would go into effect the January after the bill is passed.

Let your state representatives know that you support A. 8246 and S. 6303, and ask them to cosponsor! 

Pennsylvanians! It’s Time to Ban Accumulator Adjustment Programs!

Accumulator adjustment programs (also known as copay accumulator programs and co-pay adjustment policies) are programs that some insurance plans are instituting that 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 out-of-pocket spending requirement. Insurance plans have been implementing accumulator adjustment programs without consumer notice, which leaves patients to find out about this practice only after they incur steep prescription drug and device cost sharing mid-year. Beyond being unfair to patient consumers, these programs will have a negative impact on individual and public health.

Accumulator Adjustment Programs and Diabetes

A medical professional holding a prescription. About 1,374,000 people in Pennsylvania (roughly 12% of the state adult population) have diabetes. People who have diabetes spend more than double on their health than people without diabetes. It makes sense, then, that people with diabetes have trouble accessing their medications when the cost-sharing burden is high. A 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.

Copay cards enable patients to access their medication. People with diabetes expect to be able to use copay cards because of how commonplace they are, and many people budget their healthcare expenses for the year based on the availability of copay cards. Additionally, a person with diabetes may not be able to switch medicines in order to get a cheaper price. Among brands with copay coupons, a majority (51%) are for drugs with no generic substitute – including 12% for drugs with no close therapeutic substitute of any kind.

Changes with No Notice

A woman in a yellow jacket holds her head in frustration. In addition to the increased financial burden caused by accumulator adjustment programs, beneficiaries are not being told of the change in their insurance coverage. Beneficiaries are shocked when they find out that their plans have changed because insurance companies have not adequately informed their customers of the programs. As a result, beneficiaries have planned their healthcare budget plans as they have in previous years, only to find out that their circumstances have drastically changed.

S.B. 731 Takes Action

Pennsylvania S.B. 731 was introduced by Senator Ward and 9 others on June 7th. It was referred to the Banking and Insurance Committee that day as well. It amends the Insurance Company Law of 1921 to add language that allows any cost-sharing amounts paid by the insured or on behalf of the insured by another person. The ban would go into effect 60 days after the bill’s passage, and includes all health insurance plans except accident only, fixed indemnity, limited benefit, credit, dental, vision, specified disease, Medicare supplements, CHAMPUS supplement, long term care or disability income, worker’s comp, or auto insurance.

Raise Your Voice!

Let your Senator know that you support a ban on accumulator adjustment programs so that patients can use their copay cards and pay down their deductibles!


Click here to send a letter to your senator asking them to support S.B. 731!

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, and more. The Centers for Medicare and Medicaid Services (CMS) recently issued a guidance on spread pricing, but states have been dealing with this issue for a while now.

A Brief Explanation of Spread Pricing

Spread pricing is one of the main ways PBMs make money. CMS’s guidance defines spread pricing as follows:

“Spread pricing occurs when health plans contract with [PBMs] to manage their prescription drug benefits, and PBMs keep a portion of the amount paid to them by the health plans for prescription drugs instead of passing the full payments on to pharmacies.  Thus, there is a spread between the amount that the health plan pays the PBM and the amount that the PBM reimburses the pharmacy for a beneficiary’s prescription.”

For the visually inclined among us, here’s an excellent visual representation from Bloomberg of how spread pricing works: 

For their part, CVS, a prominent PBM, says choosing to use spread pricing is up to the health plan (for Medicaid, it’s up to the state). CVS says: “Our PBM clients have options to choose from to compensate us for the services we provide…. In one model, clients agree to pay the price negotiated with the pharmacies […] along with a separate administrative fee for the services we provide. More often, we find that our clients choose a different model whereby they contract for predictable drug costs for the year and allow the PBM to keep the difference between this fixed amount and the amount paid to the pharmacy that dispenses the drugs” (AKA spread pricing). This all sounds fine, however, while most people know that a middleman has to make money somehow, they do not know the sheer volume of profit that spread pricing can create for PBMs.   

The State of Spread Pricing in States

While spread pricing can affect any health insurance plan, including employer-based plans, states have been sounding the alarm on spread pricing in their Medicaid programs. In August of 2018, Ohio found that PBMs “collected more than $2.5 billion from plans [between April 2017 and March 2018]…… Of the $2.5 billion, nearly $225 million was generated through spread pricing, including $208 million from prescriptions for generics.” In Kentucky, a February report showed that PBMs earned more than $123 million in spread pricing in 2018, an increase of nearly 13% over 2017. With Medicaid programs representing a larger and larger portion of state budgets each year, it’s no surprise that states want to decrease the occurrence of spread pricing.

States Fight Back

So far in 2019, five states (AR, LA, MT, NY, and VA) have introduced legislation to regulate spread pricing, with most bills outlawing the practice all together. Additionally, the Pennsylvania state auditor recommended the state legislature pass laws to rework the relationships with PBMs and change fee structures. Some states have used the regulatory process to stop spread pricing instead of waiting on legislation to pass.

A map of the United States.

In Ohio, where (reminder) PBMs charged Medicaid not only a nearly 9% spread across all drugs, but also a whopping 31% spread among generic drug prescriptions, the state’s Medicaid Director barred managed care plans from contracting with PBMs that engage in spread pricing. Instead, the state is allowing contracts that have “pass-through” pricing, where PBMs receive a flat administrative fee and can only bill the state for what they pay pharmacies. This rule went into effect in January of 2019, and we’re eagerly awaiting the data that comes from it. And to add to the drama, the Ohio Attorney General is now in a lawsuit with PBM OptumRx. The Attorney General claims OptumRx owes $16 million that they allegedly overcharged the state for generic drugs.  

In Kentucky, the February report recommended eight steps the state could take to curb spread pricing, including requiring an annual PBM transparency report, prohibiting PBMs from financial incentives in the forms of copayments and deductibles, and mandating pass-through contracting for all managed care organization and PBM contracts for pharmacy benefit services. Considering nearly one fourth of Kentucky’s population is receiving Medicaid or CHIP, it will be interesting to see how the state chooses to implement these recommendations. Kentucky has already initiated a probe into PBM pricing structure as of late May.

CMS Gets Involved

All the state issues with spread pricing caught the ears of two lawmakers, Senator Chuck Grassley from Iowa and Senator Ron Wyden from Oregon. In April, the two Senators asked the HHS Office of Inspector General to conduct a “federal-level analysis of PBM practices across state Medicaid programs.” They specifically asked HHS to consider spread pricing in their investigation. CMS responded in mid-May by issuing a guidance for states on how to reduce the cost of their prescription drugs by eliminating spread pricing. CMS noted that some managed care organizations are not accurately reporting spread pricing from PBMs. We’re happy that the guidance will require more accurate reporting, which will likely uncover some disturbing trends and force states to act.

State Advocacy: Where Do We Stand?

While most people have been focusing on federal issues so far this year (and it’s been pretty dramatic, so we don’t blame you!), state legislatures have been considering and passing diabetes bills across the country. Read on to find out some of the issues states have taken on, and whether we think taking time to advocate at the state level is worth it (spoiler alert: it is). 

California is educating parents about type one diabetes!

California S.B. 138 is a bill that would require the department to develop type 1 diabetes informational materials for the parents and guardians of pupils. The bill would require, on and after January 1, 2021, school districts and charter schools to make those materials available to the parent or guardian of a pupil while the pupil is enrolled in kindergarten or when the pupil is first enrolled in elementary school, and while the pupil is enrolled in grade 7. The California legislature sat on this bill for a while, but it is back on the move! On May 21st, the Senate placed the bill in the special consent calendar, and on May 23rd, the Senate passed the bill! It now goes to the Assembly for approval. Click here to send a letter to your California Assembly member asking them to support S.B. 138!

Indiana legislators now know about the dangers of accumulator adjustment programs!

Indiana H. 1307 would have prevented accumulator adjustment programs by requiring a state employee health plan, an accident and sickness insurer, and a health maintenance organization to count cost sharing payments made on behalf of a covered individual toward the covered individual’s cost sharing amount (deductible). Unfortunately, this bill did not get out of the House Committee on Insurance quick enough to pass during the legislative session. However, the groundwork has been laid, and next session we’ll expect the House to pick up the legislation again!

Kentucky is letting pharmacists give their patients the right amount of medicine in emergencies!

The seal of the state of Kentucky with a gavel. Kentucky H.B. 64 was signed into law on March 26th. 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!

Maryland legislators had considered prohibiting copays for insulin!

Maryland S. 410 would have prohibited, except under certain circumstances, certain insurers, nonprofit health service plans, and health maintenance organizations from imposing a deductible, copayment, or coinsurance requirement on insulin after January 1, 2020. The bill was introduced in February and had a hearing in March, but did not pass out of the Senate Finance Committee before the legislative session ended. It’s too bad that this bill didn’t go further, but we’re glad that Maryland lawmakers were exposed to this idea!

Oklahoma has the chance to cap copays for insulin at $100!

Insulin pen.

Oklahoma H.B. 1130 would cap the copayment amount for insulin at $100. That would mean savings for a lot of people who have high copayments under their current insurance! This bill is still in the Committee on Insurance, and unfortunately there has been no movement since it was introduced in February. The legislative session closes on May 31st, so we have one more week to make our voices heard on this bill! Click here to send a letter to your Oklahoma representative and ask them to support H.B. 1130!

Is state advocacy worth the effort?

Definitely! With the federal legislative process running, ahem, s l o w l y, we’re looking to state legislatures to pass bills that make positive change for people with diabetes. As you can see from the list above, states are tackling a bunch of different issues – from type one education in schools, to accumulator adjustment programs, to emergency prescription access, to caps on copays for diabetes supplies. Making your voice heard in your state is an extremely effective way to advocate because often you have a more direct line to your representative, and because state representatives tend to consider more ‘out of the box’ bills. As always, you can find information on state laws on the DPAC website under ‘take action.’ And if your state isn’t addressing something that you know feel passionate about, consider contacting your representative! Can you think of an issue you think your state government should take on? 

Guest Post: Rachel Gartner Clark – Why I Advocate

In November 2003, my life changed forever at the age of 15 years old. I was diagnosed with type 1 diabetes which was a complete redirection from my teenage life. As a sophomore in high school my priorities were: homework, hanging out with my friends and going to the mall. I never thought I would end up on this long and windy journey. I am lucky to have a dad who is a pharmacist and could spot the signs and symptoms of type 1 early on, helping lead to my diagnosis. Even though I had a health care savvy dad to help me navigate my new normal, I was still completely overwhelmed by fear, anger and anxiety.

After being diagnosed, I was rushed to a children’s hospital where I had to go through survival lessons learning the ins and outs of a highly complex disease. Being a proactive person, I decided to take matters into my own hands and read as much as I could. I thought that I would be able to learn EVERYTHING as I experienced new medical advancements and navigated the different types of insulin to find out which one worked well for me.

I couldn’t do this alone.

As time went on, reality set it and I realized that I couldn’t do this alone. It was difficult for me, but I turned to my support network of family and friends and started researching different organizations who could lend resources. After living with type 1 for 16 years and counting, I’m still learning and becoming familiar with different aspects of this disease, the associated costs, and the policy pieces that impact my access to care.

More than a statistic

As time has passed one thing I’ve taken away from all of this is that everything is a numbers game. While I might be another statistic to some, I’m more than being another person that adds to the more than 30 million people living with diabetes in our nation.

I’m more than one of three million Americans to have type 1 diabetes. I’m not just another person adding into the 327 billion dollars in diabetes related health care costs. These numbers alone make me angrier than my diagnosis, but these figures have led me to my advocacy purpose.

I have discovered my voice and I’m ready to use it.

This is why DPAC is so important to me. In a short amount of time, I have learned more about the policy procedures, all of the hidden numbers that sway decisions (like how legislation gets scored), and how to have an effective conversation with our elected officials and their staff.

More importantly, DPAC fights hard to ensure the safety and quality of medications, devices and access to care for all Americans living with diabetes. I have been able to hone my story, back it up with facts and figures, while also helping others do that same due to the policy training meetings that DPAC has offered.

For me, advocacy is another way to educate those around me. It helps to teach people what it’s like to have to fight to stay alive. Advocacy has also given me the gift of finding a community that understands me in ways others can’t.

Why My Community Needs Advocacy

This community continues to educate me on things that make me a better person in my fight for affordable insulin, common sense legislation, and so much more. It’s important that we not only advocate for ourselves, but for the millions of those that will be forced into our community by a diagnosis at not fault of their own.

I believe that the more we all know then the sooner there will be real change.

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 (https://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.