A Guide to Improving Insulin Access for Patients With Type 1 Diabetes

David M. Tridgell, MD

Disclosures

February 22, 2019

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In 2017, news outlets told the stories of two men with type 1 diabetes who died as a result of the high cost of analogue insulin.

Shane Patrick Boyle went into diabetic ketoacidosis (DKA) while waiting for his crowdfunding account to reach his goal of a month's supply of insulin.[1] In my home state of Minnesota, Alec Smith was found dead in his apartment from DKA.[2] He was no longer eligible to be on his mother's insurance, and was having significant difficulties affording insulin.

I've spoken with numerous endocrinologists who had patients in similar situations admitted to the hospital with DKA. These incidents are probably underreported, and sadly, they are becoming more common.

Many patients struggle mightily to pay for their insulin, leaving healthcare providers flabbergasted about what to do. This article discusses how I approach the subject of medication costs with my patients, as well as my methods for reducing those costs and getting them the assistance they need.

A Sensitive Topic Not to Avoid

Talking about money and finances is uncomfortable for many people. In a Scientific American survey,[3] 44% of respondents said that money was the most difficult topic to discuss with others, even more so than religion or politics.

But as healthcare providers, we need to move past our own discomfort. After all, we discuss intensely private and often embarrassing details of our patients' lives, such as sexual dysfunction. If we can discuss the most intimate of human interactions, surely we can discuss cost considerations.

I consider it to be a part of the social history. If my patients can't afford what I prescribe, they aren't going to take it, or they might ration the dose, which in the case of insulin can have dire consequences.

There are several ways to broach the subject. When rooming patients, nurses can ask, "Do you have any barriers to care, such as affording medications or health care?"

Many patients can afford their insulin, but they may be making tremendous sacrifices in order to do so.

In my group practice, every exam room has a PowerPoint slide with the American Diabetes Association's (ADA's) Make Insulin Affordable website and petition. When meeting with a new patient, I will point to the slide and start by generalizing the problem, saying, "Medication and insulin costs have risen dramatically." And then I personalize it by adding, "Do you have difficulty affording your medications or insulin?" If the answer is "yes," then this may in fact be one of the most important questions you ever ask that patient.

One could simply ask, "Can you afford your insulin?" But this may not be the best way to formulate the question, and not only because it might come across as rude. Many patients can afford their insulin, in which case they may answer "yes," but they may be making tremendous sacrifices in order to do so.

By asking whether they have difficulty, we are giving patients the opportunity to tell us their story. Alternatively, you could ask whether they have either been worried about running out of insulin, or have actually run out it, in the past year before they could afford to buy more. If you only remember one thing from this article, I hope it is to ask your patients some version of this question.

Dig a Little Deeper

When you have a patient with poorly controlled diabetes and infrequent clinical follow-ups, consider the high costs of healthcare and insulin in addition to other potential factors, such as depression or eating disorders.

Some patients on insulin pumps may change their infusion sets infrequently to save money. Rather than simply instructing patients to change infusion sets every 2-3 days, take the time to ask, "Why?" If they reply that pump supplies are expensive, you now know what the next question should be.

Currently Available Options

Assistance Programs

The ADA's Make Insulin Affordable website has a "get help" tab with helpful links, including those to pharmaceutical companies offering financial assistance programs, many with a toll-free number that patients can call to talk to an actual human. Links to other patient assistance programs, which all regular prescribers of insulin should familiarize themselves with, are also provided. The Endocrine Society also has a webpage that provides resources on insulin affordability.

In general, however, patients do not qualify for these programs if they have private insurance coverage for prescription medications, Medicaid, or Veterans Affairs coverage. Medicare Part D patients need to reach minimum out-of-pocket expenses each year, which vary by program.

Income requirements vary, but generally, patients must be below 250%-400% of the federal poverty level. Unfortunately, the applications are burdensome and must be filled out annually. And then, if the patient is approved, samples are delivered to the clinician's office and must be stored in an appropriate medical-grade, temperature-controlled refrigerator.

In response to mounting pressure on drug- makers, prices have been lowered by some insulin- makers for cash-paying customers. Lilly's insulin can be purchased at 40% of list price through two programs,[4] but they will not count toward the patient's deductible.

Sanofi-Aventis has lowered the cash prices of their analogue insulins to $99 per 100 mL (pen and vial) via their InsulinsValyou[5] savings program. Although these are significant price reductions, many patients still can't afford those prices.

Coupons

Drug companies frequently offer copay coupons for medications, and links can often be found on the manufacturers' websites. However, many providers (myself included) have misgivings about coupons.

Although copay coupons reduce costs for patients at the pharmacy level, the reality is that they raise overall healthcare costs. A 2016 UCLA study[6] showed that copay coupons decrease the use of generic medications, and that brand-name drugs with coupons increased in price annually by 12%-13% versus a 7%-8% annual increase for brand-name drugs without coupons.

Only industry insiders know the actual mechanisms, but conceivably, manufactures may raise the list price of the drug or insulin to offset the cost of administering coupons, the effects of which would then filter down through the supply chain to the health insurer, who may then raise premiums.

Now I wish to be very clear here: If a patient cannot afford insulin and has no other option than to use a copay savings coupon, I will not hesitate to teach them about this option and show them how to download one. My primary responsibility is to their health.

At the same time, we all play a role in the cost of care through the tests we order, the drugs we prescribe, and the amount of copay coupons we recommend. Therefore, we should reserve these for patients in whom human insulin may not be the best option. For the rest of our patients, however, we should consider human insulin.

Human Insulin

Perhaps the single most effective thing that we can do to lower the cost of insulin for the majority of our patients is to prescribe human insulin. Vials of human insulin can be purchased over the counter for as little as $25 per vial at Walmart or CVS.In addition, premixed 70/30 (NPH/regular) is now available at Walmart for approximately $44 per box of five pens.

It has been said that perfect is the enemy of good, and I cannot think of a better illustration of that than type 2 diabetes and human insulin. Compared with human insulin (regular and NPH), analogue insulin has been shown to be associated with significant reductions in overall but not severe hypoglycemia in type 2 diabetes.[7,8]

However, many patients with type 2 diabetes can achieve very similar levels of control with human insulin, especially those who can't or won't test their blood sugar levels multiple times per day, or those who frequently miss the injection of rapid-acting analogue insulin for their midday meal.

When cost or other factors make using analogue insulin difficult or impossible, less- than- optimal control is better than no insulin at all.

Glycemic targets may need to be relaxed (ie, A1c of 7%-8%), because hypoglycemia may limit more aggressive A1c targets. For many patients, such as the elderly or those with significant morbidities, these A1c targets may be preferable regardless of the regimen. And because diabetes often takes years to wreak havoc in terms of complications, elderly patients who are complication-free may benefit less from intensive glycemic control compared with younger patients with longer life expectancies.

Both NPH and 70/30 premixed insulin are available in a pen. Unfortunately, regular is only available in a vial. For patients with physical limitations who aren't able to use a syringe and vial, consider these pen options, or for patients needing more complex regimens, consider combining NPH and rapid-acting analogue (in place of regular) via pen as a way of reducing costs.

Various regimens are available, and Dr Anne Peters recently shared her tips on how to safely transition patients to nonanalogue insulin.

Given a choice, most patients and providers prefer analogue insulin to human insulin for type 1 diabetes. However, clinicians shouldn't avoid using human insulin for appropriate patients when cost or other factors make analogue insulin a difficult or impossible proposition, because less- than- optimal control is better than no insulin at all.

Also, consider educating patients with frequent coverage gaps or those who may be at risk for future coverage gaps on how to use human insulin, and provide them with a backup plan that includes dosing of human insulin.

Medication Management Pharmacists

Medication management pharmacists comanage such conditions as diabetes, hypertension, and hypothyroidism. When drug costs become a concern, they are able to look up formulary information and cost information—such as copays—with patients. Referrals to medication management pharmacists can be made during office visits or when patients call the clinic with medication cost concerns.

Benefits at Your Fingertips

Most of us would prefer open formularies, but for the foreseeable future, closed formularies are here to stay. To help deal with this frustrating issue, electronic medical records are increasingly being equipped with real-time benefit tools, which essentially allow clinicians to see which medications are on formulary and, if equipped, what the cost to the patient is.

The benefits are obvious: fewer phone calls; more efficient use of clinician, nurse, and pharmacist time; and more useful clinic visits, with fewer loose ends. The downsides are technological difficulties, lack of standardization, upgrades to the electronic medical record that may cost money, and no requirement for plans to participate.

Still, the gains will be well worth it in the long run, and these systems may even help increase patient and clinician satisfaction and decrease physician burnout by reducing frustration and unnecessary redoing of work.

Conclusion

Analogue insulins have improved diabetes management, particularly in type 1 diabetes. Yet, the prohibitive and dramatically increasing costs are a significant burden on many of our patients. I encourage all of us not to lose the forest through the trees of blood sugars, but to remember that we went into healthcare to take care of people, not just their diseases. Let us actively engage and listen to our patients to find safe, effective, and affordable therapies.

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