Everywhere we turn these days, we're seeing restricted access to the vital diabetes medications and supplies we depend on to keep us healthy.

From rationing test strips to restricting our choices of insulin to being told insurance will no longer cover the cost of a particular item we've been using for years, the roadblocks seem to be coming faster and harder than ever before.

It has me more than a little worried... I'm steaming mad, depressed, and just overall afraid of what the new "bottom line" will mean for those of us just trying to manage our diabetes the best we can.

The Oregon Fiasco

In Oregon, state health officials decided on Dec. 5 to dramatically reduce the number of test strips allotted to people with type 2 diabetes who are on Medicaid and don't take insulin. They can now get only one vial of 50 test strips at the time of their diagnosis, and basically no strips beyond that -- unless they can prove they're at serious risk of hypoglycemia. Even then, the allotment is only "up to 50 test strips every 90 days." WTF?!Strips in Vial

The commission had actually been considering an even more drastic reduction in strips: type 2 PWDs with an A1c above 8.0% would have been entitled to only one test strip per week, while those an A1c below 8.0% wouldn't get any strips at all!

As reported by our friends at diaTribe, who were able to attend the Oregon Health Evidence Review Commission (HERC) meeting and observe the vote:


While it's encouraging that the commission responded to the public outcry against limiting test strips, we were shocked by the attitude of several commission members. We heard some say, "More knowledge for patients is not always better...", "Lay people just don't understand these issues...", and "We make guidance based on evidence, not emotions..." Even though the revised proposal avoided the worst-case scenario, these quotes underscore a profound misunderstanding of the daily realities of diabetes management.


You're darn right they do!

This is downright disturbing. And not just for those who are specifically affected by this change in Oregon. It's only a matter of time (if it hasn't already started) before other states look to what Oregon has done consider making similar cutbacks. And of course, what happens with Medicaid and Medicare is often seen as an instruction guide for the private insurance market, which we all know is heavily concerned with their short-term bottom line more than long-term health outcomes.

And what's going on here isn't limited to state health commissions. Not by a long shot.

Throughout the country, these same kind of restrictions are being felt by the D-Community from various insurance providers.

We've heard horror stories about PWDs being told they can no longer get their regular supplies and meds, both in federal programs and in the private insurance market. The Medicare reimbursement cuts have been forcing many to find new diabetes supply distributors and make changes in their management routines. We've even heard rumors that VA hospitals are telling veterans they can't have any short-acting insulin but can only get long-acting insulin (we couldn't substantiate this).

Express Scripts Tricks

And then there's news that ricocheted through the Diabetes Online Community (DOC) a couple of months ago, that mail order meds distributor Express Scripts is making drastic changes for 2014 in terms of which diabetes meds and supplies are accessible to its members. Joining what CVS Pharmacy had already done in 2012, Express Scripts published a list of 48 medications and supply brands that will be "excluded" starting on Jan. 1.

On that list: key test strip brands like Abbott and Accu-chek, and insulins like Apidra and Novolog. We know a number of PWDs (people with diabetes) who've received letters from Express Scripts informing them of the change in coverage from Novolog to Humalog.



ExpressScripts Excluded D-Meds



But hold up... don't get all panicked just yet. There's the tricky use of the term "covered" here to consider...

Obviously, this is about Express Scripts trying to limit costs, and the company's rationale is that the excluded items cost more than the less-expensive items yet "work just as well." So they're trying to make you think twice before ordering one of these more expensive, name-brand items on the list... but that doesn't necessarily mean your insurance company won't cover what you want or need. In many cases, you can still get it -- IF you are willing to jump through some hoops.

This is basically a deterrent tactic, to keep us from pressing for the more expensive supplies that we might prefer.

When we contacted Express Scripts communications director David Whitrap, he brushed this aside, telling us the new rules are "really similar" to what the company, and most distributors and insurers, have long had in place: a requirement of "medical necessity" proof before they'll approve a certain medication or supply. Yes, there may be a "preferred" list of products that's been negotiated, but even if something isn't "preferred" that doesn't mean you can't get your hands on it.

When pressed on the details, Whitrap told us:


You may not be affected. Fewer than one-third of Express Scripts members are on the National Preferred Formulary. And for those that are, Express Scriptsfewer than 3% use ANY of the products that are no longer included in the 2014 formulary. If you are one of the affected patients, you will be contacted by Express Scripts beforehand. If you are affected, there are covered alternatives that have been deemed "clinically equivalent" for the vast majority of patients with that condition. We understand that there are rare instances when an on-formulary alternative may not be an option for a particular patient. For these situations, we have a standard exception process that physicians may pursue to have an off-formulary, "medically necessary" drug covered for their patient. This exception criteria differs on a drug-by-drug basis across the 48 affected medications, but here are some examples that may apply: If the covered alternative is inappropriate for a certain population group (e.g., children) then all patients within that category would be able to gain coverage for the excluded medication. If the patient has recently tried the covered alternatives and found them to be ineffective or problematic, then they would be able to gain coverage for the excluded medication.


The bottom line is that if you want one of the meds or supplies on Express Scripts' excluded list, you can use the appeals process to fight for that with your doctor's help. Just like the rules CVS Caremark put in place last year, Express Scripts is now requiring "prior authorization" for many items that previously did not need it.

If Express Scripts or CVS turns you down for coverage, then it comes down to paying 100% of the cost up front. But if it turns out the item is still covered by your insurance plan, then apparently you can get reimbursed.

Curious, I checked with my Anthem insurance plan, that will offer me a modified version of the coverage I have right now as of Jan. 1. Even though I use Bayer strips that won't be "covered" by Express Scripts, my insurer still plans to cover them. The catch is that it will be up to me to contact my doctor's office ahead of time each time I need a refill to get that "prior authorization" or "override" in place, to obtain the strips that I believe are the best-suited to help me manage my diabetes.

Ugh! I like my Bayer meter, but they're obviously hoping I'll give up the fight and settle for a cheaper (and for me less effective) meter. So much for consumer choice!

These additional hoops and "money over best health" practices are getting frighteningly more common. Most of us have stories about being told our supplies or meds are denied or not necessary, despite what we know and what our doctors have prescribed. The payers are pushing hard to save money up front... but at what cost? Future complications, higher hospital rates from increased ER visits, etc.?

What Can We Do?

There's no easy answer. Related to Oregon, there's a Change.org petition that already has 3,550 signatures -- please add your signature to help show how concerned the diabetes community is!

You can also tweet the governor of Oregon to let him know how you feel about what's going on in that state.roadblocks

You can also think about writing protest letters to officials, staring with the group that our friend and fellow Christel Aprigliano has dubbed "Oregon's Diabetes Death Squad" (see details on her site).

Christel also suggests checking on the current number of test strips offered under the Medicaid program in your own state. Is there something brewing to restrict the number? I checked in my home state of Indiana and although there's a "preferred list" of brands, it didn't appear that there are any new restrictions aside from the typical "one strip per day" rule applied across the board in Medicare and Medicaid. In Amy's home state of California, the state office also didn't elude to anything happening on the test strip restriction front. You can check your state's policies, too.

No doubt that change is comin' -- and it looks pretty restrictive. So we need to stand up and raise our individual and collective voices, before the roadblocks become universal and permanent.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.