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Advocacy

Last modified: February 05, 2018

Advocacy works! At least one Canadian was able to get his insurance to cover Freestyle Libre before Health Canada approved it by advocating. Good luck with your insurance!

IMPORTANT: This page represents the advocacy experiences of others. What worked for others may not work for you. You need to use your personal judgement for your own situation. We will update this page as more people contribute their successes and suggestions. You can share your suggestions by e-mailing info@type1together.ca. Please share your findings with us via our Share Your Findings page.

We agree -- this page has a lot of text. :-) We expect it would take you a couple of months to work your way through all the steps described on this page. You don't need to read the entire page at once. Consider starting with Phase 1.

Current Status

Based on reports, we believe that the following provincial plans are covering Libre (for at least one person - you may need to advocate/appeal):

  • Ontario Disability Support Program

Based on reports, we believe that the following private insurers are covering Libre:

  • Alberta Blue Cross
  • Alberta School Employee Benefit Plan (may require appeal)
  • Desjardins
  • Equitable Life
  • Industrial Alliance
  • Manulife
  • Medavie (group plans only at this point)
  • SSQ (to start at the end of January 2018)
  • SunLife (will widely cover Libre sensors as equivalent to test strips as of October 1, and will also widely cover CGMs at $4000/year as of November 1. Check your plan; employers can opt out.)

Great West Life should declare their Libre coverage the week of February 5.

PSHCP (Public Service Health Care Plan) was covering Libre sensors, but is now "still deciding".

We've heard single reports of coverage (one person reporting coverage) from:

  • Equitable Life
  • Manitoba Blue Cross
  • Ontario Teacher Insurance Plan

We have heard far more denials than coverage with Green Shield.

Overview

Phase 1: Express interest and ask about coverage

Step 1.1: Note the PINs (product ID numbers) and DINs (drug identification numbers) you'd like to discuss.

  • The DINs for FIASP are:
    • 02460408 - vial
    • 02460416 - cartridge
    • 02460424 - pre-filled FlexTouch pen
  • The PINs for FREESTYLE LIBRE are:
    • 97799170 - reader
    • 97799171 - sensors
  • The DINs for TRESIBA are:
    • 02467860 - U-100 cartridge
    • 02467879 - U-100 pre-filled FlexTouch pen
    • 02467887 - ***U-200 pre-filled FlexTouch pen

Step 1.2: Consider asking about more than one drug or product

Perhaps you're interested in Libre, but consider also asking about Fiasp and Tresiba. Asking about other products under active consideration tells the insurance company that patients will value coverage.

You can ask about a drug/product even if you don't think you'll use it. And who knows -- one day, you may be glad you did! Insurers will not add coverage for a product unless they think the demand will be there. We need to communicate how important these drugs and products are to us.

Here's a brief summary:

  • Fiasp - Fiasp is the fastest-acting insulin available in Canada. It's faster-acting than NovoRapid, Humalog, and Apidra. Its generic name is insulin aspart. The generic name of NovoRapid is also insulin aspart. The formula is very close to NovoRapid. Novo Nordisk is selling Fiasp at the exact same cost as NovoRapid. Fiasp is not officially "indicated" for pump use in Canada, but it is in Europe.
  • Freestyle Libre - Freestyle Libre is a new flash glucose testing technology that uses sensors. Each sensor holds 8 hours of test results, and lasts 14 days. Freestyle Libre allows you to see your glucose levels from minute to minute, and provides a trend line to facilitate insulin and lifestyle adjustments. It is not a CGM (continuous glucose monitor). You still need to test if your blood glucose is changing quickly, or if you aren't confident in the value it's showing you.
  • Tresiba - Tresiba is the longest acting insulin available in Canada. Tresiba is so long acting that you no longer need to inject at the same time every day. Tresiba does not sting. Tresiba has a half-life of 25 hours. Lantus has a half-life of 12 hours. Toujeo has a half-life of 18-19 hours.

Step 1.3: Contact your insurance

Many insurers have more than one method of contact. We may have already looked up several contact options for your insurance. Check our insurer contact page.

Here are some conversation starters:

  • I'm really excited about [Fiasp/Freestyle Libre/Tresiba]. Can you tell me if my plan covers it?
  • Are you actively considering covering this new product/drug? Or have you decided already?
  • When will you decide by?
  • Can you give me a status update on [Fiasp/Freestyle Libre/Tresiba]?
  • If you decided not to cover it, would you please explain why?
  • Can I speak to someone on the decision-making team? (Expect a firm "no!" on this one. :-) )
  • How can I provide my feedback that this product/drug is really important to me?
  • How can I make sure the right people hear my feedback?

(Abbott Freestyle Libre) When you ask about coverage, ask them to check both the "drug side" and the "device side".

Step 1.4: (Abbott Freestyle Libre) Ask how the readers are being classified (PIN: 97799170)

You might hear a response in one of these categories.

  • Similar to other blood glucose meters
  • Insulin pump supplies
  • Diabetes supplies
  • Extended health benefits or Durable Medical Equipment (DME)
  • Continuous glucose monitoring (CGM) technology
  • Other

Step 1.5: (Abbott Freestyle Libre) Ask how the sensors are being classified (PIN: 97799171)

You might hear a response in one of these categories.

  • Similar to other blood glucose test strips
  • Insulin pump supplies
  • Diabetes supplies
  • Extended health benefits or Durable Medical Equipment (DME)
  • Continuous glucose monitoring (CGM) technology
  • Other

Step 1.6: Consider Customer Service escalation

Consider asking to speak to a manager if:

  • You don't feel confident in the answers that you are being provided
  • You feel the customer services representative will not pass your expression of interest along to the decision-making team
  • You want to raise visibility of your issue

Consider escalating as many times as you need in order to feel confident in the information you're being given, and that your issue will be heard by the right people. You may need to speak to a manager's manager's manager. After a couple of escalations, they may tell you they'll get back to you within 48 hours. Eventually, they will stop allowing your escalations.

Some people have had success by looking up the Director or Vice President of Customer Service via LinkedIn or google, and guessing at their email address. For example: if the Vice President of Customer Service at your company is Chen Naib, you might try emailing: chennaib@yourinsurance.com, chen.naib@yourinsurance.com, and cnaib@yourinsurance.com. (It is very unlikely that capital letters matter in this situation.)

Step 1.7: (Abbott Freestyle Libre) Escalate to Bayshore

If your insurance is listed above as known to provide coverage, and the person you connect with is vowing you don't have coverage, reach out to BayShore. You can contact Bayshore via a web form, or by phone: 1-888-205-8296. Bayshore should have expertise in getting insurers to recognize their Libre coverage. They should also be happy to help you. :-)

Step 1.8: Report back

Please share your experiences and findings with us via our Share Your Findings page. You can report anonymously.

Every bit of information helps us move things forward.

Phase 2A: Appeal in writing

Step 2A.1: Get it in writing that you're not covered.

You don't need to submit a prescription. You also don't need to have your doctor write a letter or fill out a form. If applicable (and it may be with Freestyle Libre), ask the insurer to include definitions in their response. Ask them to send you written definitons of "blood glucose monitoring", "continuous glucose monitoring" and whatever new terms they invent to try to get out of paying (such as "glucometer sensors"). It may help to request a history of revisions of those definitions, but they may not give that to you.

Here are some ways to get things in writing:

  • Email your insurer and request determination.
  • If you spoke with a rep, ask if they'll send you a letter confirming you aren't covered.
  • If you're inquiring about a drug, you can ask a pharmacist to print out the cost.
  • If you've already purchased the item in question, you can attempt to claim it for reimbursement.
  • If you don't want to purchase the item until you're covered, submit a pre-authorization request (sometimes called a Prior Authorization form). If you're inquiring about Freestyle Libre, you can print out the Freestyle Libre order page. Write the PINs beside the reader (97799170) and sensor (97799171). You could submit costs for a single purchase, a month's worth, or for three months' worth. Right now, we don't know which way works best.

Next, cheerfully await your rejection letter, and pat yourself on the back for changing the world. :)

Please share your findings with us via our Share Your Findings page when you hear back.


Step 2A.2: Appeal to your insurance, including the written rejection in your response.

Sharpen your pencils -- it's time to write an outstanding letter. Include a copy of your written rejection in the envelope. Note: PSHCP has some specific expectations they expect you to go through before you appeal.

It may be helpful to include a letter of support, or a statement of medical necessity from your endocrinologist at this stage.

Tell your story. Decide whether sharing personal or emotional details will help your case.

Here are some possible points to make:

  • You have (long-standing) type 1 diabetes, and your body does not produce insulin.
  • You have failed to meet / experienced substantial hypoglycemia to meet glycemic targets.
  • You experience [##] episodes of hypoglycemia per week, and you worry that it affects your job/school performance.
  • Hypoglycemia can cause cognitive impairment for up to 75 minutes after the low has resolved.
  • Each time your blood glucose level goes low, you must test, treat with glucose, then test again. And sometimes, you need to take additional glucose, and then test again. All that testing is expensive.
  • (Ladies) You experience significant changes in insulin requirements on a daily basis during the majority of days in your menstrual cycle.
  • (Ladies) You are of child-bearing age. According to Diabetes Canada's Clinical Practice Guidelines, before you try to get pregnant, you should strive to attain an A1c "as close to normal as can safely be achieved" to decrease the risks of spontaneous abortion, congenital abnormalities, preeclampsia, and progression of retinopathy. You want to try to get your A1c "as close to normal as can safely be achieved".
  • You have diabetes complications.
  • You are frequently physically active, and you must check your glucose before exercise, after exercise, and every [##] minutes for safety.
  • You have allergies, and exposure to an allergen affects your blood glucose control.
  • You attend diabetes clinic frequently, and are well-educated about how to manage T1D.
  • You invest substantial energy into managing your T1D.
  • You take [sick days/have been late to work/have left work early] because of your diabetes, and feel that enhanced diabetes management will reduce the number of sick days you experience.
  • You work in a profession where cognitive impairment stemming from hypoglycemia could lead to job loss, injury or death. (IE: Long-haul trucker, forklift driver, chef, teacher...)
  • Diabetes is too complicated. Insulin requirements are determined and affected by: consumption of carbohydrates, consumption of fat/protein, activity level, type of activity, the number of days since one was last active, caffeine intake, alcohol consumption, extent of “dawn phenomenon”, hormones, body weight, stress, illness, inflammation, menstrual cycle, pregnancy, insulin exposure to temperatures > 30 degrees Celsius, absorption variability, injection location, presence of hyperlipotrophy or scar tissue in injection location, age of infusion site (if using an insulin pump), cortisone injections, ambient temperature, sleep, allergies, altitude, plane rides, pain, smoking, current blood sugar level, and recent blood glucose levels (as a period of elevated blood glucose levels create insulin resistance). Both positive (such as being proposed to) and negative (such as fear) emotions can have dramatic effects on insulin requirements. Less commonly, using a vial or cartridge of insulin beyond 28 days can also negatively affect the potency of some insulins. You need more powerful tools.
  • According to Diabetes Canada guidelines, we should aim for a glucose range of 4 to 7 mmol/L, fasting or before meals. Converting mmol/L to mg/dl facilitates our calculations, and gives us a range of 72 to 126 mg/dl. For the majority of the day, we’re trying to target a range of (126 – 72 = ) 54 mg/dl, or 0.54 grams per litre. Since the average adult has 5 litres of blood, we’re trying to control blood glucose fluctuations within 2.7 grams. That’s less than the amount of sugar in a single Life Savers candy for an adult, and it’s reduced even further for a child. You need more powerful tools.
  • Diabetes is a significant source of conflict in your life, and it threatens your relationships.
  • Insulin management is an immense burden. According to data collected by Type 1 Together, 35% of Canadians reported that they typically wake up at least twice a night because of T1D.
  • Denying advancements reduces our sense of hope, and sets people up for failure.
  • You are currently experiencing diabetes burnout, or have experienced it [##] times in the past.
  • You have fear of hypoglycemia.
  • You have hypoglycemia unawareness.
  • You sometimes go low [maximum number of times] times a day.
  • You average [##] lows per week.
  • Taking 15-30 minutes to treat hypoglycemia, and 75 minutes to recover cognitively means that a person with T1D may be incapacitated for more than an hour and a half during their work/school day treating and recovering from just a single episode of hypoglycemia.

Fiasp:

  • Taking Fiasp 20 minutes after the start of a meal manages blood glucose levels as well as NovoRapid taken just before a meal.
  • It can be more accurate to bolus for what you ate, than for what you planned to eat.
  • Fiasp users also saw slight A1c improvements in studies, without a higher likelihood of severe hypoglycemia.
  • Novo Nordisk sells Fiasp at the same cost as NovoRapid. (If you see a price difference at your drugstore, it's because your drugstore is getting cash grabby.)

Freestyle Libre:

  • You feel they are misinterpreting the definitions of CGM and blood glucose monitoring. (Use their definitons in your case. Note: this was how the individual who got Libre approved before it was in Canada got his coverage.)
  • Explain how they will save money because you test enough that Libre will cost less.
  • Freestyle Libre is not a CGM.
    • Freestyle Libre does not alert or alarm in response to glucose fluctuations.
    • Freestyle Libre does not have a transmitter.
    • You must swipe a reader over the sensor to get a reading.
    • Freestyle Libre cannot be calibrated.
    • Freestyle Libre is much cheaper than CGM.
  • Blood glucose strips have an accuracy of +/- 20%, 95% of the time. For every 20 tests you do, one will be inaccurate enough to lead to a clinically inappropriate decision. You need to repeat tests frequently to confirm suspicious results.
  • Some days, you need to test [##] times a day to [stay safe/stay at target/drive safely/etc.]
  • Freestyle Libre is the most affordable tool for managing your glucose levels.

Tresiba:

  • Tresiba reduces the risk of severe hypoglycemia by 40% (by 53% overnight).
  • Sometimes your life is too busy to take your needle at the exact same time every day.
  • Your Lantus wears off and doesn't last the full day. It makes your sugars [challenging to manage/unmanageable] for [##] hours before and [##] hours after your injection.
  • You don't like the way Lantus/Toujeo stings.

Please share your findings with us via our Share Your Findings page when you hear back.


Step 2A.3: Appeal to your insurer's ombudsperson

Here, you'll send in the original denial, and the appeal letter denial. Add a fresh letter, explaining why their decision is inappropriate.

Please share your findings with us via our Share Your Findings page when you hear back.


Step 2A.4: Appeal to the (external) OmbudService for Life and Health Insurance

The OmbudService for Life and Health Insurance (OLHI) is "Canada’s independent complaint resolution and information service for consumers of Canadian life and health insurance". You can file a complaint on their website.

Please share your findings with us via our Share Your Findings page when you hear back.

Phase 2B: Consider escalating to your employer

Tread carefully here. According to the DAWN2 study results, 1 in 3 Canadians with T1D have experienced discrimination.

If you feel your job is safe and you will not be harmed by escalating to your employer, consider approaching your HR department. You might include an explanation of how the drug/technology you're advocating for will improve your performance as an employee.

If you are in a union, increasing insurance coverage may need to wait until your next round of contract negotiations. Speak to your union rep about the union's processes for proposing an extension to health insurance benefits.

Please share your findings with us via our Share Your Findings page when you hear back.