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A Patient’s Perspective on Non-Medical Switching

Who’s in charge- your doctor

or your insurance company?

These are strange times, when we have to think about insurance companies and medical suppliers like they’re our doctors.

No, they aren’t. But don’t tell the insurers and suppliers that tend to act this way.

Using strong-arm language like “not covered” and “preferred brand,” they try to force our hand. And then they take it to the next level by disregarding doctors’ decisions and ignoring prescriptions, weaponizing phrases like “therapeutically equivalent” and urging us to jeopardize our health with a treat-to- fail step-therapy regime before even considering what our doctors have already prescribed.

This is the world of Non-Medical Switching, where payers justify their decisions based on cost more than listening to the medical advice of our healthcare professionals.

I’ve experienced this many times, and it’s an issue my medical care team and I are always frustrated with. There are four examples that come to mind, from recent years:

CGM Type: That time at the start of a year with a new insurance company, when I was refilling a Dexcom CGM sensor order and the company told me that they would rather not approve this CGM because I happened to use a Medtronic insulin pump – and so, that brand of CGM would be a better fit for me. (Result: It took insistence with an insurance supervisor to make it clear my doc and I knew what was best, especially given I’d been on Dexcom for years).Three different insulin pens, two with their needles exposed, sit on a white platform in front of a pink background

Lantus to Tresiba: When the new basal insulin Tresiba came out from Novo, I studied a lot of the data and patient reported outcomes (PRO) that showed it might be better for me than Sanofi’s Lantus. In particular, the fact that Tresiba could last 42 hours rather than the 24 of Lantus, and I may not have to split my total basal dose into twice-a- day to see the most effectiveness. Their argument: That Lantus was “therapeutically equivalent” to Tresiba since they’re both basal insulins. And so before they’d cover Tresiba, I’d have to show Lantus didn’t work for 30 days, and then competing Levemir also didn’t work for 30 days. (Result: My doctor and I reiterated that I’d been on Lantus for months, and that this “step-therapy” had already been met – Lantus didn’t work as evidenced by my higher A1C and glycemic variability, and if my insurer described Lantus and Levemir as “therapecally equivalent then they couldn’t very well argue I’d have to waste another 30 days trying that insulin. We ‘won’ after firing off an appeal letter to the insurer).

Humalog to Novolog: Pretty much the same situation as above, but this time I decided that it wasn’t worth the fight to try for Humalog. I’d never actually tried Novolog before, and despite reports out there about insulin differences and allergies, there was no guarantee I’d experience that. (Result: So, I opted to switch to Novolog pens and in the end saw no difference from what I had while using the other brand. Of course, when looking at the actual cost breakdown on the Explanation of Benefits, there was hardly a difference in overall price tag between the two brands – even though I’d be paying a $40 difference in copays.)

A businessman holds a sign that says "No"

Afrezza inhaled insulin: That time my doctor and I decided inhaled insulin would be the best treatment, instead of just injected insulin that wasn’t doing the job. We again had to hear about step-therapy, and interestingly despite my past use of Humalog and Novolog, my Afrezza still wasn’t initially approved. We wrote a letter contending that we had met the step-therapy, and that Afrezza was medically necessarily to prevent my severe hypos and glycemic variability. It took two rounds of letters, but we once again prevailed. (Here is my appeal letter).

Countless people who live with diabetes and so many other health conditions experience this type of short-sighted Non-Medical Switching every day.

My endocrinologist has told me stories of others experiencing this NMS, who simply don’t fight and accept whatever the preferred payer brand is. And that months later on a return office visit, my endo learns that they weren’t using the prescribed medication.

He has often wondered aloud, “Why bother having a medical license and even writing
prescriptions, when they’re denied and second-guessed 99% of the time?

I’d also argue it’s criminal, in that it equates to practicing medicine without a license. The individuals making these decisions may not even have an M.D. behind their name. Sure, there’s probably a doctor on the letterhead somewhere, but it’s an actual nurse or even a lower health insurance employee actually approving or denying my insurance claim.

A hand holding a stamp hovers over a document. The document is stamped 'Approved' in red letters.

Of course, I’m lucky.

See, I know that payers are in this for cost. And I know that you don’t have to take “No” for an answer. Even when insurers, Pharmacy Benefit Managers, and third-party distributors try to force a change, that’s not the way it has to be. Patients have power and can fight back, sometimes with a little extra effort and at other times with more extensive appeals for coverage.

None of this is right and I fear it may get worse as this becomes more mainstream practice. I’m hopeful that national and state-specific advocacy and lobbying actions can move the needle, but in the meantime those of us on the patient and provider side are left dealing with these issues in the trenches.

What You Can Do to Help Stop Non-Medical Switching

I think both patients and healthcare professionals should be alarmed, and I’d encourage everyone to check out the #MyMedsMyChoice and #KeepMyRx sites to learn more and take action.

Children with Diabetes (CwD) is a 501(c)(3) non-profit organization that provides education and support to individuals and families living with type 1 diabetes. The organization has recently established a website (www.MyMedsMyChoice.org) to gather basic information from all people with diabetes (or their caregivers) and healthcare professionals about their experiences with non-medical switching. The website links to two short surveys: Patient/Caregiver and Healthcare Professional.

Click here to take the survey and help gather this important data!

The My Meds, My Choice Logo on a blue background.

The Diabetes Patient Advocacy Coalition (DPAC) supports this initiative and urges you to go to the website and complete the short Patient/Caregiver or Healthcare Professional survey. DPAC’s statement on non-medical switching can be found here.

A photo of Michael HoskinsMichael Hoskins is associate editor at DiabetesMine. Diagnosed with type 1 at age 5 back in 1984, Mike’s the son of a type 1 mom who was diagnosed at the same young age in 1958. He’s been an insulin pumper since his final year of college in 2001, graduating not only from two shots a day but also with a bachelor’s degree in journalism from Oakland University. A writer for most of his life, journalism has been a focus since middle school and has taken Mike to a variety of weekly, daily and specialty newspapers. Migrated in January 2004 from the Detroit, MI, suburbs to the Indianapolis, IN, area where he worked at a statewide legal newspaper for six years, just before finding the Diabetes Online Community and re-energizing his own local advocacy and personal diabetes writing style. Loves spending time with his wife Suzi and their black lab Riley, while also indulging his history buff tendencies and exploring family ancestry in his free time.


To learn more about non-medical switching and how it hurts people with diabetes, watch this video:



Pharmacy Benefit Managers

Pharmacy Benefit Managers (PBMs) Under Pressure

Most people get their insulin or other diabetes medication in one of two ways. Some buy their drugs directly from a pharmacy at list price (which can be extremely expensive). Most, however, will get their prescriptions paid for, at least in part, by their health care plan. The price of diabetes medications has skyrocketed in recent years, and that directly harms anyone paying out of pocket for their prescriptions. Pharmacy Benefit Managers, or PBMs, may be to blame.

PBMs Are Increasingly Active Middlemen

The first PBMs emerged in the 1970s to serve as intermediaries between pharmacies and insurance companies. Back then, they were called “pharmacy claims processors,” and that is still their most basic role. 

How do PBMs work?

A PBM is associated with a health plan, and a pharmacy will notify the relevant PBM whenever a patient leaves a prescription with that pharmacy. The PBM will verify that the patient has coverage and tell the pharmacy what copay/coinsurance is needed. The PBM will also flag any other approvals or additional information that may be needed before the prescription can be filled.

Over time, health insurers began to expect more. PBMs began to provide safety limitations, such as preventing certain drugs from being given to children. Cost control soon became a priority as well, as PBMs helped push patients to generic drugs. In the late 1980s, online claims systems began to roll out nationally and PBMs gained both large market shares and a wealth of information about their patents and their suppliers. 

By the late 1990s, claims processing was still the main source of revenue for PBMs, but it was becoming a commodity service with declining profitability. PBMs had to look elsewhere for revenue and began selling drugs directly to patients through mail-order pharmacies, for example.  Express Scripts is the country’s largest PBM, and this is how they describe their work today:

Spread Pricing is the Name of the Game


Much of the revenues for PBMs today come from negotiating the price spreads between the cost of the drugs they buy from manufacturers and the price they charge patients. PBMs represent millions of consumers, and therefore they have tremendous leverage to force concessions from drug manufacturers or pharmacies. For example, PBMs may pressure pharmacies to reduce their fees and reimbursement levels in order to have access to the PBMs’ plan beneficiaries. 

Perhaps more importantly, PBMs can take a hard line with drug manufacturers by purchasing huge amounts of drugs while demanding deep rebates. They will, in turn, charge health plans to use their processing services, while taking a cut of each transaction. Meanwhile, list prices creep higher and higher, forcing those who have high deductibles or no insurance to face list price at the pharmacy counter.


There is a lot of debate over whether these price spread negotiations actually help patients. The U.S. Health and Human Services Inspector General has found that these types of negotiations earned PBMs about $275 per beneficiary per year in Medicare Part D programs, a savings of about 10% of the total drug costs. This helped patients to a degree. 

Some credit PBM’s with dramatically driving down health care costs overall. Unfortunately, these savings may not always be passed on to the customers. There is an increasing belief that drug makers are raising their list prices so that they can turn around and cut huge discounts to PBMs.  The problem is that while the list price is not the real price paid by most companies in the market, many patients will be slammed with the sticker price. 

EpiPen example

The controversy with the emergency allergy treatment EpiPens highlighted this problem. EpiPen’s manufacturer jacked their sticker price up to $608 but claimed it was only collecting $274 on the average sale. Health insurers were still paying closer to $608, while the PBMs pocketed most of the difference through rebates.  Meanwhile, many patients were stuck paying the $608 sticker price.

Cutting PBMs Out of the Process

A challenge PBMs currently faces is coming from companies that are seeking to cut PBMs out of the process altogether. Several years ago, Caterpillar started paying close attention to the PBM on its employee health plans. The company created its own list of approved drugs that promoted generics. It also pushed employees away from expensive heartburn and cholesterol medicines.  Caterpillar says this has saved tens of millions of dollars each year, and many other companies are following suit and switching away from the big PBMs to smaller “transparent PBMs” that just charge flat fees for processing claims.  Caterpillar has also joined forces with numerous other large companies to form the Health Transformation Alliance to seek out these types of opportunities for employers to cut costs by cutting out middlemen.

Patients Must Stay Vigilant

The 30.2 million Americans with diabetes need to know what impact PBMs are having on the treatments they need to survive. Sen. Ron Wyden (D-OR) has teamed with three other Senators to introduce legislation that he says would “lift the veil of secrecy” around drug prices by requiring PBMs in Medicare to disclose their rebates and how much of those rebates are passed on to health plans and patients. 

We covered the Examining the Drug Supply Chain hearing in front of the Energy & Commerce Health Subcommittee and shared our key takeaways as patient advocates. DPAC also has a statement regarding access, including prescription drugs. 

How can you keep up with the latest news about PBMs and more? Download the DPAC mobile app!

The Dangers of Associated Health Plans – and What You Can Do

Associated Health Plans

Remember the days before the Affordable Care Act?

Remember paying more than your neighbor for the same insurance coverage solely because you have diabetes?

Remember worrying that you might reach your insurance’s lifetime limit on coverage?

Well, those worries are very real possibilities again thanks to AHPs.

The latest attack on the Affordable Care Act (ACA) comes in the form of proposed rules that would make it easier for small businesses to band together and create associated health plans, or AHPs, that would be exempt from consumer protections mandated by the ACA. The first rule, proposed Thursday, January 4th, keeps the ACA prohibition on lifetime limits and protections for people with pre-existing conditions. However, the rule would allow associations to throw out the ten essential health benefits promised by the ACA, which include mental health, substance abuse treatment, maternity care, and prescription drug coverage.

Even worse, the Trump administration is expected to propose a second rule soon that lifts the Obama administration’s restrictions on short-term health insurance plans that are not subject to any of the ACA’s provisions. This means that the short-term plans could not only eliminate coverage for essential health benefits, but also discriminate based on pre-existing conditions and institute lifetime caps on coverage.

So, what are associated health plans?

The term “associated health plans” refers to the concept of different associations offering health insurance. The concept is easiest to explain with an example: several independent hair salons might form an association to buy one health plan for all their employees. Because there would be more more employees with all the salons grouping their employees together than if any one salon bought insurance for its employees by itself, the salons have access to better plans that are marketed to large groups. Most AHPs are organized around a common professional interest, like a professional organization or industry group, a trade organization, or a state or local chamber of commerce.

In theory, AHPs help small businesses get better insurance for their employees because they can pool their resources and purchase better plans with fewer fees and greater benefits that are meant for larger groups. If it is marketed to individuals, an AHP is subject to the requirements of the ACA for nongroup coverage. This means that the AHP must comply with applicable standards and insurance protections, including coverage for essential health benefits. If the AHP isn’t marketed to individuals, however, it can exist within a single state, and be subject to that state’s insurance laws, which may not include coverage for essential health benefits.

Why are AHPs bad for people with diabetes?

Even though the first rule keeps the ACA protections for people with pre-existing conditions and ban on lifetime limits, encouraging AHPs allows associations to get out of providing essential health benefits. People with diabetes could see an increase in costs for their prescriptions, regular doctor visits, and overall premiums. Additionally, AHPs could charge customers different prices depending on their age, gender, and location. 

The second rule, when it gets announced, will allow short term insurance plans to eliminate not only the essential health benefits, but also the ACA restrictions on charging people with pre-existing conditions more and the ban on lifetime limits. People with diabetes could face significantly higher prices for plans that offer less, and could be locked out of coverage all together when they get too expensive.

If even insurance companies admit that something is bad for consumers, it probably is. Proponents of the rules hope that major insurance carriers will be interested in selling group plans to smaller employer buyers. However, insurance companies have spoken out against rules like these for a while. America’s Health Insurance Plans, which represents large insurance carriers including Anthem, Centene, Oscar Health, Humana, and many Blue Cross and Blue Shield plans said:

Americans deserve affordable choices, and we are concerned that the changes proposed would lead to higher prices and weaker consumer protections in the small group and individual markets, where nearly 40 million Americans get their coverage.”

What could happen if these rules are implemented?

Together, these rules have advocates worried about massive instability in ACA insurance marketplaces. Experts and advocates warn the rules would lead to skyrocketing premiums and a major fragmentation of the insurance markets. The short term plans especially likely would attract younger, healthy people because they’d cost less and cover less. Without healthy people in the individual marketplaces, there will be imbalance that will cause premiums for existing consumers to increase dramatically.

In addition, these two rules could open the door to a new wave of poorly regulated health plans that exclude coverage of key services required by the ACA. With regulations stripped back, AHPs could abandon the essential health benefits, and the short term plans outlined in the second rule could abandon every requirement of the ACA, including the popular provision protecting people with pre-existing conditions.

It comes down to this: people with diabetes could be stuck paying much more money for much less coverage.

What can you do?

Want to share your thoughts on Associated Health Plans with the government? There is a sixty day comment period on the first proposed rule expanding AHPs. Your comment will be shared with the Department of Labor. You can visit the Federal Register to leave a comment.



Congress Asks: Why Can’t Seniors Have Accurate BG Meters?

Trusted versus Unknown

If you had a choice between using a trusted blood glucose meter that you know is accurate and one that you had never used before (and never heard of before) that you don’t know is accurate, which would you pick? 

Most of us would choose the accurate one, for obvious reasons. However, for Medicare beneficiaries who want to use the National Mail Order Program to receive their testing supplies, that’s not often an option.

H.R. 3271 and S. 1914 (both known as the Protecting Access to Diabetes Supplies Acts of 2017) force the Centers for Medicare and Medicaid Services (CMS) to change the way that the Competitive Bidding Program (CBP) is applied to diabetes testing supplies.

DPAC has been speaking in support of H.R. 3271 and S.1914 (Protecting Access to Diabetes Supplies Acts of 2017) for some time now –  just see DPAC’s CEO Christel Marchand Aprigliano’s testimony on the bill in front of the E&C Subcommittee on Health as one example!

Now we have a chance to get new momentum behind the bill.  

The Congressional Diabetes Caucus recently sent a letter to the acting secretary of HHS asking him why Medicare beneficiaries with diabetes are receiving blood glucose meters that aren’t accurate. If H.R. 3271 or S. 1914 becomes law, CMS must do two main things: (1) strengthen the 50% rule, which would lead to Medicare beneficiaries being able to use the accurate blood glucose meter they trust, and (2) strengthen and codify the anti-switching rule, which would change the refill process to give the beneficiary more choice and knowledge from the supplier when they buy a blood glucose meter.

We have Congress’s attention. Now we need to ask them to act!

Keep reading for details or click HERE to send a letter

to your Representative and ask them to cosponsor H.R. 3271!

Currently, Medicare pays for the cheapest blood glucose meters, so the most trusted blood glucose meters on the market are not available to beneficiaries. Additionally, as the Congressional Caucus on Diabetes wrote, a recent study showed that only six of the eighteen blood glucose meters in the study were accurate to DA Standards. Many of the meters offered through the National Mail Order Program are not accurate.

The bills require CMS to make sure that an entity that enters the competitive bidding process has the ability to actually get their products to people with diabetes when the person needs it. The bills also let CMS terminate a contract with a bidding entity if it is unable to get supplies to beneficiaries when they need them. In addition, the bill specifies that an entity furnishing such products to beneficiaries:

  • an entity selling diabetes testing supplies must give the Medicare beneficiary the brand of test strips that they want, and that match the blood glucose meter that they want,
  • the entity may not try to influence or incentivize a beneficiary to switch the brand of either their diabetic test strips or their blood glucose meter, and  
  • the entity must refill prescriptions within fourteen days.

(House Summary) DPAC has blogged about this in detail before, and that blog can be found HERE.

This month, the Congressional Diabetes Caucus took up this issue when they wrote a letter to the acting secretary of HHS, Eric Hargan, asking him why Medicare beneficiaries only had access to certain blood glucose – most of which did not give accurate results! The Caucus asked HHS what steps, if any, CMS and the FDA are taking to ensure seniors with diabetes receive products that work as intended? In its letter, the Caucus wrote:

“Given the importance of blood glucose measurement to manage diabetes, we are concerned about the study implications on patient health and safety. Some stakeholders have even suggested that CMS suspend the National Mail Order Program in light of these and other potential problems that are limiting seniors’ access to quality products. We therefore urge you to take action to implement and enforce product performance standards for diabetes testing supplies. Seniors should be able to rely on the accuracy of the blood glucose testing systems obtained from Medicare. Taxpayer dollars also should not be spent on products that are inaccurate, unsafe, of dubious quality or that are mislabeled or misbranded.”

CMS has until January 29th to give an answer to the Caucus’s questions. You can learn more about the Congressional Diabetes Caucus HERE.

H.R.3271 and S.1914 will let Medicare beneficiaries with diabetes use the blood glucose meter that they and their doctor decide is best for them, and will make sure that no company can try and get a beneficiary to switch brands for no medical reason.

We need to help Medicare beneficiaries with diabetes get quality equipment.

You can send a letter to your Representative asking them to cosponsor H.R.3271 HERE.

Let’s protect our community on Medicare with diabetes!


Children with Diabetes May Lose CHIP Coverage


Click HERE to send a letter telling Congress to protect children with diabetes and fund CHIP!

The Children’s Health Insurance Program, or CHIP, provides health insurance for 8.9 million children from working families who make too much money to qualify for Medicaid but still cannot afford or access private insurance coverage. (KFF) CHIP is funded with both federal and state dollars, and federal CHIP funding has to be periodically renewed. (Commonwealth) Federal funding for CHIP expired on September 30, after Congress failed to pass any legislation that would reauthorize it. Congress prioritized trying to repeal the Affordable Care Act over the summer instead of passing a reauthorization, despite three-fourths of the public saying it is important for Congress to work on reauthorizing funding for CHIP. (KFF)

Without CHIP, children will suffer.

If CHIP funding is not reauthorized, children from low-income families, including children with diabetes, will lose their health insurance, which could mean losing access to doctor’s visits and prescription medicines. Among other things, CHIP covers primary care services, preventative care services, specialist care, physical therapy, occupational therapy, speech and language therapy, and dental care. (KFF)

States are planning a variety of responses to CHIP federal funding running out.  Most states will face a budget shortfall because they assumed they would have federal CHIP funding when creating their 2018 state budgets. Fourteen states have already reported plans to end coverage for children, and five states will end coverage by the end of January. Seven states reported plans to close new enrollment for children or establish caps on the total number of children that can be enrolled in CHIP. Additionally, several states have reported plans to reduce CHIP coverage for pregnant women. There is no requirement for states to provide CHIP coverage, except where states must maintain CHIP-funded Medicaid expansion coverage under the ACA “maintenance of effort” requirement. (KFF)

We need to tell Congress to provide funding for CHIP.

Click HERE to send letters to your Senators and Representative to tell them to provide funding for CHIP, and to put the needs of children first.

CALIFORNIA: Tell Your State Legislators To Support AB 447

On April 25th, the California Assembly Health Committee will hold a hearing on AB 447.

AB 447 would authorize Medi-Cal to cover CGM as ‘medically necessary’ and end the disparity of access compared to all major private health plans in California that offer CGM.  They will decide if the bill can move forward and be considered by the Assembly Appropriations Committee.

Every major commercial health plan in California covers CGM.  They recognize the value of CGM in improving outcomes and lowering the total cost of treating this horrible disease.  Medicaid programs in forty states recognize the value of CGM and provide access for high-risk diabetic patients.

CGM can help narrow the wide gap in diabetes outcomes between poor and wealthier communities in California.   The rate of diabetic amputations where Medi-Cal is the primary health provider is 10 times higher than wealthy communities, according to a 2015 UCLA study.  Another UCLA study showed the rate of hospitalizations was higher for people with diabetes, and the cost of care was over $2,200 more per patient.

[bctt tweet=”California #DOC: Ask your legislators- support AB 447 http://bit.ly/2puzNuJ” username=”DiabetesPAC”]

Utilization of CGM will not “break the budget” – only a small portion all diabetics will meet the strict clinical guidelines for CGM use.  The investment in CGM will pay for itself many times over in reducing severe and costly complications.


If you are a citizen in the state of California, here’s your opportunity to speak up to your State Assemblyman/woman and Senator, asking them to support AB 447 and support the diabetes community in California on Medi-Cal. 


Click here to send an email to your California Legislators Now. 

How To Convince Lawmakers to Keep Pre-Existing Condition Protections

The 2010 Affordable Care Act created many protections for people afflicted by diabetes, and perhaps none is more important than mandatory coverage for individuals with pre-existing conditions.  Today, the Republicans that run Congress and many state legislatures are working to repeal the Affordable Care Act.  Millions of Americans with pre-existing conditions must unite to protect their right to affordable, quality health care.

Your Government Works For You!

Americans do not think much of Congress.  Their approval rating has hovered somewhere between 9% and 30% in recent years and public polling has found that only about 11% of Americans think the average Member of Congress listens to the voters he or she represents.  

The truth is very different.  Research from the nonprofit Congressional Management Foundation found that more than 90% of congressional staffers say a lawmaker can be influenced by an in-person contact with a voter or a personalized email.  Groups that routinely interact with lawmakers on a particular issue can also be very influential.  Information on home-state impacts of a policy will often move the needle as well.  State lawmakers are usually even more open to influence from everyday citizens, because they typically are less insulated by staff or pressured by donors.  

You can find plenty of real-world examples.  Consider a story recently told to Vox by former Senator Byron Dorgan.  During the Affordable Care Act debate, Sen. Dorgan was a leading proponent eliminating lifetime coverage limits.  He says he was so passionate about the issue because of a mom in his state that had a son with a costly blood disease.  

The mom contacted Sen. Dorgan constantly to tell her story.  She visited him in person, she wrote letters to the editor, and she attended his events.  She told Sen. Dorgan that her young son would hit his lifetime limits by around age 16 and he may not be able to get care after that.  Sen Dorgan said was not aware of this problem until hearing from this particular mom, and she convinced him to become an advocate for banning lifetime caps.  Those caps are now outlawed.  

There are a few important elements to consider in this story.  First, there was a very clear problem that government could solve.  Insurance companies were capping benefits, and the government could make that illegal.  This was not an abstract problem like “curing cancer” where it is not always clear exactly what the government should do.  Second, there was a real person in the Senator’s state the could be helped.  Eliminating lifetime caps presumably allowed this child to keep the health care services he needs to stay alive.  Finally, the mom went to see Sen. Dorgan in person.  A phone call or email can help, but there is no substitute for having a real person make a live connection.  

Congress is Being Influenced Right Now

If you a skeptical, consider the more recent example of Sen. Tom Cotton.  He has been trying to get rid of the Affordable Care Act ever since he was elected to Congress in 2013.  On February 22, 2017, however, he was confronted in a town hall meeting by a constituent that says she relies on the law.   


It is probably not a complete coincidence that just a couple weeks later Sen. Cotton became one of the first Republicans to slam the door on the current repeal efforts, saying “Get it right, don’t get it fast.”


What is the Best Way to Contact Your Representatives in Congress?

The first step is to find out who your representatives are.  We have a handy tool that can allow you to find your representatives using your address.  

Next, write down what you want to say.  We can provide you with summaries of the major issues, but the key is for you to make it personal.  Think about how the 2010 pre-existing condition protections in the Affordable Care Act changed your life or the life of someone you know.  Then think about how things would change if those protections are removed.  Lawmakers need to hear stories about real people with pre-existing conditions that rely on the Affordable Care Act.

Once you have figured out who to contact and what to tell them, you just have to figure out where to find them.  You can use the contact information available in our tool.  If you are not near Washington, D.C. or your state capital, consider calling the offices to find out when the relevant lawmakers will be in your town for an event or meeting.  

Federal officials can be more difficult to reach, but state lawmakers are often readily available.  If you cannot find a way to meet your lawmakers in person, research shows the next-best thing is a personalized letter or email.  Phone calls can be helpful as well, but most offices are overwhelmed by calls and that has made them less effective.  

DPAC makes it easy for you to contact your members of Congress with just a few clicks. In fact, if you’d like to make sure they understand how important it is to protect those with pre-existing conditions, click here and share your message!

The ACA Repeal & Medicaid: What Would it Look Like For Patients with Diabetes?

President Obama’s signature legislation, the Affordable Care Act (ACA), has touched the lives of nearly every American. Over 20 million people are currently covered by a healthcare plan governed and facilitated by the Health Insurance Marketplaces (healthcare.gov), established by the ACA. While many discussions focus on the Marketplace and ACA in general, an important discussion needs to happen about Medicaid.

Medicaid expansion has opened up the opportunity for many people who didn’t qualify for Medicaid traditionally thanks to its income-only requirement. For people in the 32 states who have adopted the expansion, if their income is at or below 138 percent of the Federal Poverty Level (FPL), they can qualify for Medicaid.

For all of its controversy, the facts remain clear: the ACA has helped millions of people afford healthcare coverage, access contraceptives, receive mammograms and other important health screenings, and provide healthcare to their children up to the age of 26. For people with diabetes, we cannot be charged more for coverage than those without diabetes and we cannot be denied.

However, if the current Republican leadership gets its way, that’s all about to change. President Trump, Vice President Pence, and a sizeable number of Republican lawmakers in Congress have already begun to pave the way for a swift repeal of the ACA. What’s even more concerning to a large number of Americans is that they have no solid plan prepared to replace the ACA in the event of its repeal. (While they have proposed plans and two are in the markup phase, many experts have come forward to state that these are not solid or sustainable.)

The initial plan is to repeal large portions of the ACA, including the Medicaid expansion, but the long game is to repeal virtually every provision of Obamacare, except for allowing children up to 26 years of age to stay on their parents’ plans – and at first glance, protect those with pre-existing conditions.

To understand the impact this repeal would have on patients with diabetes, it’s necessary to first explain what Medicaid used to look like and how the expansion changed it.

Medicaid Prior to 2013 and How the ACA Changed It

Before President Obama initiated the Medicaid expansion provision of the ACA, the population of those enrolled in Medicaid tended to fall into five major groups: low-income children, pregnant women, the elderly, the disabled, and some parents.

Many individuals with serious health complications, such as diabetes, weren’t sick enough to warrant a disability status, and some couldn’t find health coverage at all due to their having a pre-existing condition. The Medicaid expansion changed all of that, making it so that income alone could qualify a person as entitled to Medicaid benefits.

In other words, instead of having to prove a litany of factors ranging from family status and household size to disability and other characteristics, interested individuals could qualify for Medicaid on the sole condition that their income was less than 138 percent of the Federal Poverty Level.

By creating this expansion, Obama allowed nearly 17 million people who were either paying astronomical fees for healthcare or couldn’t obtain it at all to enroll in Medicaid and receive healthcare coverage, some for the first time in their adult lives.

What Would the ACA Repeal Look Like? 

In a January 2017 article, Democracy Now quoted former Press Secretary Josh Earnest’s summary of what an ACA repeal would look like.

“Twenty-two million people are going to lose their health insurance if the Affordable Care Act is repealed. It’s going to rip a hole in the deficit, in the federal budget, and the deficit will go up, if the Affordable Care Act is repealed. That’s not just my conclusion; you can ask the CBO about that.”

How is that possible? If Republicans repeal the ACA they will effectively cauterize the flow of billions of dollars of subsidies currently supporting the 32 states that have expanded Medicaid, as well as some private health insurance coverage through the exchanges.

All of the funding that made it possible for 22 million people to obtain health care coverage, including the 17 million who have access to Medicaid only because of that funding, will disappear overnight, leaving nearly all of those currently covered under the ACA either without coverage or trapped in a chaotic transition that could make health care difficult if not impossible to obtain.

With no clear plan to replace the ACA, only a swift series of actions intended to repeal it, there’s no telling how disastrous it could be.

DPAC makes it easy to send a message to your Congressional represenatives. With a few clicks, you’re on your way. Click now…

[button link=”http://act.diabetespac.org/dpac/app/onestep-write-a-letter?2&engagementId=275093″ color=”red” size=”xlarge” type=”” shape=”” target=”_blank” title=”” gradient_colors=”|” gradient_hover_colors=”|” accent_color=”” accent_hover_color=”” bevel_color=”” border_width=”1px” border_color=”” border_hover_color=”” shadow=”” icon=”fa-envelope-o” icon_divider=”yes” icon_position=”left” modal=”” animation_type=”0″ animation_direction=”down” animation_speed=”0.1″ class=”” id=””]Tell Congress to Protect People with Diabetes[/button]

Stakes Are High for Diabetes Patients on Medicaid

All of that information is startling enough, but when the ramifications of an ACA repeal are applied to specific situations, such as the millions of diabetic patients currently covered by ACA provisions, the picture becomes even scarier. Diabetes patients rely on medication and strict physician oversight in order to maintain their health. Without insulin, prescription medication, and regular doctor’s visits, one episode of high or low blood sugar could be deadly. For those utilizing Medicaid, losing coverage is a recipe for disaster.

However, there might be some good news amid all the fear and speculation.

How Likely is an Overnight Repeal 

The situation above is the worst fear of millions of Americans with diabetes, and given how high on the agenda an ACA repeal is, the widespread fear over what might happen is understandable. However, there is a silver lining.

As an Insulin Nation article aptly pointed out, the situation isn’t quite as dire as it seems. While the repeal of the ACA would be hard on everyone, such a repeal would take quite some time to go into effect, and along the way its implementation would cause sweeping economic problems and likely be challenged by innumerable court cases.

That’s assuming the repeal gets passed in the first place. Republicans did not obtain the supermajority they needed in order to pass an ACA repeal uncontested. There are enough options for congressional Democrats to confront and potentially stop a repeal, especially given the fact that if every member of Congress voted along party lines, Republicans wouldn’t be able to obtain the 60 necessary votes to end a Democratic filibuster.

While it’s likely that the wheels of bureaucracy would stall the implementation of an ACA repeal, perhaps for years, the possibility that it could be repealed at all still remains a source of concern for many, and rightly so.

How Can Our Diabetes Community Help?

Mobilization and activism are crucial in this tense political climate, and using your voice to let the government know how an ACA repeal would affect you is your duty and right.

You can make your voice heard right now by sending a message to Congress, asking them to protect those with diabetes. If we don’t tell them that people with diabetes matter, who will? Our community must unite – and whether you use Medicaid, Medicare, employer-based, or individual insurance coverage, this repeal will impact all of us.

DPAC makes it easy to send a message to your Congressional represenatives. With a few clicks, you’re on your way. Click now…

[button link=”http://act.diabetespac.org/dpac/app/onestep-write-a-letter?2&engagementId=275093″ color=”red” size=”xlarge” type=”” shape=”” target=”_blank” title=”” gradient_colors=”|” gradient_hover_colors=”|” accent_color=”” accent_hover_color=”” bevel_color=”” border_width=”1px” border_color=”” border_hover_color=”” shadow=”” icon=”fa-envelope-o” icon_divider=”yes” icon_position=”left” modal=”” animation_type=”0″ animation_direction=”down” animation_speed=”0.1″ class=”” id=””]Tell Congress to Protect People with Diabetes[/button]


Playing Policy Advocacy at Recess

Congress is coming home from Washington for a break – or a recess. The House calls it a “District Work Period.” Your Representative may be having a town hall or other public event to connect with constituents. If so, it is an excellent opportunity to share your views on diabetes and health policy.

What’s Your Member Doing for Recess?

Your member’s web page is a great place to find out what they have scheduled. Or you can call their office.  DPAC’s Scorecard lists every member of Congress’ web page and phone number.

Go to the Scorecard

  • Scroll Down to your State and Member
  • Click the “www” in your Member’s row for their website.
  • The DC office phone number is there too.
  • Scroll to the right and find out how many people in your district live with diabetes.


Write a question before you go. Start with a short introduction including:

  • Your hometown, so they know you are a constituent.
  • How many people in the district have diabetes, so they know there are a lot of us.
  • A specific question that touches your life, so the member’s reply address you as an individual.


Hi. I am Jane Doe from Hometown. I am one of 56 thousand people in the 5th district with diabetes. It is a pre-existing condition of us all. How are you protecting access to my doctor and the treatments she prescribes that me a useful and productive contributor to the community here in the 5th district?


Hi. I am Jane Doe from Hometown. My child is one of 56 thousand people in the 5th district with diabetes. Will you protecting her access to care through my insurance until she is 26 so she can see her doctor, stay a healthy and established herself as a young adult?

Get there early and get a good seat.

While You Are There

Even if you may not agree with your representative’s party or stand on a topic, it’s crucial to be polite during your interactions. Insulting or yelling at a representative is a sure way to shut down a productive conversation quickly.

Stick around.

  • Connect with staff and get their contact information.
  • Engage with local reporters.
  • Offer to be a resource and share your contact information.

What if They are Not Playing?

If you are not seeing that your Member of Congress is holding a town hall meeting, you can still connect.

  • Call the office and politely ask when the members will appear at a public event in the district.
  • Make an appointment at the local office to speak to staff.
  • Sign up for their newsletter to stay informed of your Members activities.
  • Ask your question through your member’s social media channels.

Help the Senate HELP Committee

The current lack of coordination between three dozen federal agencies for diabetes programs is one item that can be fixed by the current 114th Congress.

The National Diabetes Clinical Care Commission Act (H.R.1192/S.586) would create a commission to help bring these agencies together and provide recommendations, support, and programs for all Americans with diabetes and the 86 million Americans who have prediabetes.

House Passed, But Stuck in HELP Committee

This bill passed the House on November 14, 2016, and was sent to the Senate, where it was referred to the Committee on Health, Education, Labor and Pensions (HELP).

It’s still there. Without a discharge from this committee, it will never see the Senate floor and be voted upon before a new Congress is sworn in (and this Act would start from zero!).

We Need Senator Lamar Alexander to discharge this bill from this committee. (He’s the chair.) Once that’s done, it can be brought to the Senate floor, where it has 33 cosponsors, and then off to be signed by the President to become law.

Why is it Stuck?

We’ve gotten word from our colleagues at AACE (American Association of Clinical Endocrinologists) that despite their meetings with leadership, the CURES Act and the upcoming ACA issues are pushing this bill to the back burner. The claim is that no more committee markups will be scheduled.

The diabetes community can’t push this disease to the back burner. We need to help the HELP Committee leadership understand the benefit to not only our community but the U.S. health care system as well if this bill passes.

Let’s HELP the HELP Committee.

accelogoClick here to send a message to your Senators, asking them to contact Senator Lamar Alexander, the Chair of the HELP Committee, and ask him to discharge this bill from HELP so that it can be voted upon by the Senate.

To learn more about the bill, click here.

To learn what DPAC has to say about the bill, click here.

To learn what AACE (American Association of Clinical Endocrinologists) has to say about the bill, click here.

DPAC was honored to have Dr. George Grunberger for an Ask An Expert discussion on this bill. You can watch the archived presentation here.