Tagged: type 1 diabetes help

I Don’t Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.

 

 

 

#DBlog Week: In The Boats Together

Today is one of those days.

Living with diabetes is sometimes akin to paddling quickly in a leaky dinghy, trying to cross a river.

  • You have a goal: the other side.
  • You have tools to help get you there: a bucket to dump the water out that keeps pouring into the bottom and a motor or a paddle and even a rudder to get you moving in the right direction.
  • You have others to help you: those in your boat with you or those encouraging you to row faster from the other side.

Despite all this, you still have to paddle fiercely while using the bucket to prevent you from sinking deeper and drowning.

If the weather is warm and sunny and the current is still, the trip across isn’t too bad. You’re tired, but you made it to the other shore.

1438226_71663221But…

  • Rough weather? A torrential downpour? Pitch black of night?
  • Lose a paddle? Can’t afford to buy another motor?
  • Those on the other side are screaming at you, not in encouragement, but in frustration that you can’t get there fast enough or you’re just plain “paddling wrong”?

And that river is rocky. You have to dodge the rocks you can see and hope that you can avoid the ones that scrape the bottom of your boat that hide under the surface. Some of those rocks can rip a gaping hole into the side of your tiny dinghy and you are… sunk.

You have to climb into that boat every day. No breaks. Exhausted? Too bad. Feel like you can’t do it again? Too bad.

It is too bad.

And for anyone who has diabetes, our battered boats cast off anew every day to the other side (and there is always another side), while we hope to reach it unscathed.

Any wonder that people with diabetes are at a higher risk of depression than the general population? That our burnouts have serious consequences to not only us, but our friends and families?

Today, my boat is taking in more water than I care to admit. My blood sugars are slightly above range, but it’s because I’m exhausted from lack of sleep. (Alarms on my CGM/pump went off to let me know that I was getting a weak signal. My blood sugars were fine, but because the CGM couldn’t tell, it woke me up.) My food intake has been more caffeine and less salad today than I wanted. Even the good stress I feel over launching my dream is still stress.

If I didn’t have diabetes, my dinghy may have holes from other things. I may not know how to navigate other waters or I may be the one on the other side of the river, yelling encouragement.

But I have diabetes. And a leaky boat.

And as I look down the river,

there are millions of leaky boats struggling along with me to get to the other side. Every day.

 

 


May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

Need Help With U.S. Diabetes Supplies and Medications?

159942_2191For anyone who has diabetes, the cost of staying alive is expensive.

This is a current list of currently available programs, co-pay cards, organizations and manufacturers that may help, and the requirements to participate in the programs.

Why did I create this?

Every other “diabetes financial assistance/resource” page that I would visit would give you a link to supposed help - but you had to dig deep to find out if there were exclusions or restrictions. Some of the resource pages had links that no longer exist. Others had a single page that said: “We no longer offer a program.” (And I’m talking major diabetes organizations and manufacturers… they’re not keeping their own pages up to date…)

This page will give you the restrictions/exclusions I’ve found and the contact information and site to get yourself started if you qualify. (And in some cases, all of us will qualify!)

These links are up to date and I will be adding additional resources as they are made available. (If you have links or resources, please list them in the comment section and if they’re legitimate, I’ll add them.)

Right now, you’ll see a glaring absence of blood glucose monitoring supplies. Every link I researched ended with a dead end. Roche/Accu-Chek does offer a free Aviva or Nano meter on their site, but there are no programs currently offered for free/discounted strips. If this changes, I’ll let you know. (And not five minutes after posting this, Megan helped our community by giving us our first program for test strips/meters. That’s what community is all about!)

Hope this helps you.

Share it if you please - no one should be “sick” with diabetes from a lack of medication or supplies - let’s help each other by getting the word out. 

Diabetes Medications & Needles

Eli Lilly

Eli Lilly offers Humalog, Humalin, and Humalog Mix under the Lilly Cares program.

  • You must be a U.S. resident.
  • You must not have prescription coverage.
  • You must meet the household guidelines:

Household Income Guidelines:

  • The total number of people in the household includes yourself and each of your dependents.
  • Total yearly income includes incomes from all earners in your household before taxes and deductions.
  • To qualify, your total yearly income cannot exceed the values listed below.

 

Number of People in Your Home 1 2 3 4 5 6 7 8
Total Yearly Income
(48 Contiguous States and DC)
$36,000 $48,000 $60,000 $72,000 $84,000 $96,000 $109,000 $121,000
Alaska $44,000 $59,000 $75,000 $90,000 $105,000 $120,000 $136,000 $151,000
Hawaii $41,000 $55,000 $69,000 $83,000 $97,000 $111,000 $125,000 $139,000

 

For additional information about Lilly Cares, call at 1-800-545-6962.

*A 120-day supply of medicine will be shipped to your health care provider’s office. Prescription refills will be available during your 1-year enrollment period.

GlaxoSmithKline

Avandia may be available at a reduced cost or for free. Unfortunately, the qualifications are not listed. You must call 1-866-GSK-FOR-U (1-866-475-3678).

NovoNordisk

Novo Nordisk Patient Assistance Program (PAP) provides free medicine (to those who qualify), including: Levemir, Novolog, Novolog Mix 70/30, Novolin, GlucaGen Hypo Kit, Victoza, and disposable needles for FlexPens and Victoza.

The application for Novo Nordisk’s medication assistance program is downloadable here. 

  • There are several limitations to this program. Review the application for all the restrictions.
  • You must be a U.S. citizen.
  • Patients must have a household income less than 200% of federal poverty level.

You can get more information by calling the Novo Nordisk Patient Assistance Program toll free at 866-310-7549.

If approved, a free 120-day supply of medicine will be sent to the prescribing health care providers’ office to be picked up at the patient’s convenience. Novo Nordisk will automatically contact the health care provider 90 days later to approve the medication reorder.

Merck Helps

Merck offers a prescription assistance program for Januvia.

  • You do not have to be a US citizen. Legal residents of the United States, including US Territories, are also eligible.
  • Your prescription for a Merck medicine from a health care provider licensed in the United States.*
  • You do not have insurance or other coverage for your prescription medicine. Some examples of other insurance coverage include private insurance, HMOs, Medicaid, Medicare, state pharmacy assistance programs, veterans assistance, or any other social service agency support.
  • You may qualify for the program if you have a household income of $46,680 or less for individuals, $62,920 or less for couples, or $95,400 or less for a family of 4.

The application for this program must be downloaded, filled out, and brought to your medical provider. Click here for the Merck Helps application.  (It is also available in Spanish.)

If you don’t meet the criteria, you can also try and use the “Januvia copay assistance coupon”. 

Januvia’s coupon is for “as little as $5 per prescription” for up to 12 months. Here’s the information on the restrictions and what you’d need to do. 

Pfizer

If you use Glucotrol, Pfizer offers a discount card for individuals who have NO prescription coverage. You’ll need to call 866-706-2400 to apply. 

  • You must be prescribed a Pfizer medicine available at a savings.
  • Have no prescription coverage.
  • Live in the United States, Puerto Rico, or the U.S. Virgin Islands

They also offer free medication for uninsured individuals through some clinics and hospitals. You can see if there is one located near you by entering your zip code at this website. 

Sanofi- Apidra

Those who take Apidra can use the Apidra® No Co-Pay Savings Program with their Apidra® prescription payments. Activate your card by checking this box and you can get No Co-Pay* on Apidra®. If you’re registering someone under the age of 18, please call 855-242-6938.

  • The card is not valid for prescriptions purchased under Medicaid, Medicare, or similar federal, state, or other government funded benefit programs.
  • Only patients who reside in the United States or Puerto Rico can participate in this program.
  • All commercially insured patients are eligible, even those with insurance that places Apidra® on the 3rd tier.
  • Cash-paying patients are also eligible for a benefit of up to $100 off per prescription.

Sanofi - Lantus

Sanofi offers a discount card for those who use Lantus SoloStar - pay no more than $25 for up to 3 prescriptions. (Maximum $100 benefit off of each prescription, for up to $300 for three prescriptions.)

  • The card is not valid for prescriptions purchased under Medicaid, Medicare, or similar federal, state, or other government funded benefit programs.
  • Only patients who reside in the United States or Puerto Rico can participate in this program.
  • All commercially insured patients are eligible.

Patient Access Network Foundation

The Patient Access Network (PAN) Foundation, an independent, national 501 (c)(3) organization dedicated to providing underinsured patients with co-payment assistance through more than 60 disease-specific programs that give them access to the treatments they need.

Diabetic Foot Ulcers

Eligibility Criteria

  •  Patient should be insured and insurance must cover the medication for which patient seeks assistance.
  •  The medication must treat the disease directly.
  •  Patient must reside and receive treatment in the United States.
  •  Patient’s income must fall below 400% of the Federal Poverty Level. (Here’s the handy chart showing you what that is based on how many people are in your household.)

Diabetic Macular Edema

Eligibility Criteria

  •  Patient should be insured and insurance must cover the medication for which patient seeks assistance.
  •  The medication must fight the disease directly.
  •  Patient must reside and receive treatment in the United States.
  •  Patient’s income must fall below 500% of the Federal Poverty Level. (You can use the chart and do the calculations for 500%. For instance, if you are a household of one, you qualify if you earn less than $48,350 gross income annually. For a household of three, you qualify if the household earns less than $98,950.)

Kidney Transplant Immunosuppressants 

Eligibility Criteria

  •  Patient should be insured and insurance must cover the medication for which patient seeks assistance.
  •  The medication must fight the disease directly.
  •  Patient must reside and receive treatment in the United States.
  •  Patient’s income must fall below 500% of the Federal Poverty Level. (You can use the chart and do the calculations for 500%. For instance, if you are a household of one, you qualify if you earn less than $48,350 gross income annually. For a household of three, you qualify if the household earns less than $98,950.)

Solid Organ Transplant Immunosuppressant Therapy

This will cover pancreas transplants and kidney-pancreas transplants.

Eligibility Criteria

  •  Patient should be insured and insurance must cover the medication for which patient seeks assistance.
  •  The medication must treat the disease directly.
  •  Patient must reside and receive treatment in the United States.
  •  Patient’s income must fall below 400% of the Federal Poverty Level. (Here’s the handy chart showing you what that is based on how many people are in your household.)

Retinal Vein Occlusion (RVO)

From the Patient Access Network Foundation website:

Central and branch retinal vein occulusions (RVO) happen when the vein at the back of the eye is blocked. This blockage causes pressure build and some of the small blood vessels in the eye may burst and cause fluid to leak into the retina. If untreated the vessels may be able to repair themselves and bypass the blockage but there may be permanent damage to the retina resulting in vision loss. 

Eligibility Criteria

  •  Patient should be insured and insurance must cover the medication for which patient seeks assistance.
  •  The medication must fight the disease directly.
  •  Patient must reside and receive treatment in the United States.
  •  Patient’s income must fall below 500% of the Federal Poverty Level. (You can use the chart and do the calculations for 500%. For instance, if you are a household of one, you qualify if you earn less than $48,350 gross income annually. For a household of three, you qualify if the household earns less than $98,950.)

 

Healthwell Foundation

For children under eighteen years of age

HealthWell Pediatric Assistance Fund® assists children 18 years old or younger living with a chronic or life-altering condition that their families are struggling to treat due to cost. They provide financial assistance to families so their children can start or continue critical medical treatments, including diabetes.

Families must meet HealthWell’s standard income and insurance eligibility criteria to qualify for a grant. Grants are awarded on a case by case basis. To apply for a grant, call 1-800-675-8416 anytime Monday through Friday, 9:00 a.m. to 5:00 p.m. (ET).

  • You must have some form of health insurance (major medical or prescription drug) that covers part of the cost of your medication.
  • Families with incomes up to 400 percent of the Federal Poverty Level may qualify. HealthWell also considers the cost of living in a particular city or state.
  • If you appear to be eligible for assistance through the Pediatric Assistance Fund, additional information and documentation is required for review and consideration prior to grant approval. Once all information has been received and reviewed by the committee, grant determinations will be made.
  • You will be asked to provide the Foundation with the patient’s diagnosis, which must be verified by a physician, nurse practitioner, or physician assistant’s signature. The patient must receive treatment in the United States.

Immunosuppressive Treatment for Solid Organ Transplant Recipients

HealthWell will pay for the following medications for immunosuppressive therapy:

Astagraf XL, Cellcept, Gengraf, Hecoria, Imuran, Myfortic, Neoral, Nulojix, Prograf, Rapamune, Sandimmune, and Zortress.

  • You must have some form of health insurance (major medical or prescription drug) that covers part of the cost of your medication.
  • Families with incomes up to 400 percent of the Federal Poverty Level may qualify. HealthWell also considers the cost of living in a particular city or state.

You can apply online for this medication grant here.  or call 800-675-8416. Agents are available Monday–Friday 9am–5pm EST.

Insulin Pumps

Medtronic MiniMed

The Medtronic Financial Assistance Program offers help to those who:

  • Use an insulin pump and/or continuous glucose monitoring
  • Meet specific income guidelines
  • Have an insurance company that allows for additional assistance

It also provides temporary coverage for specific situations:

  • Unemployment within the last 12 months
  • Gap in insurance coverage because of a pre-existing condition
  • Multiple pumpers in one household
  • Permanent disability

You’ll need to call Medtronic 1-800-646-4633 and select option 4 to get specific information.

Other pump companies offer self-funding payment programs. You should call them individually to find out the particulars. (The plans may change based on what you are looking for…)

*** If you have information regarding insulin pump programs, please contact me via email at theperfectd [at] gmail.com - you’ll be helping us all out!***

Equipment

Charles Ray III Diabetes Association

The CR3 Diabetes Association, Inc. is a 501(c)3 non-profit organization. 

According to the website, the organization is currently accepting applications for insulin pumps, blood glucose meters, and blood glucose test strips. You must review the following criteria:

  • You are uninsured
  • You are under insured (which means that your yearly deductible is unattainable)
  • Household income is less than $60,000
  • Your physician has recommended insulin pump therapy for you

They will only accept online applications on their website. The link to the online application is here.

Supplies for CWD Foundation (For children aged 18 years and younger)

Supplies for CWD Foundation (SCWDF) is a branch of the Children with Diabetes Foundation, a non-profit 501(c)(3) organization, providing short-term (up to three months) diabetes supplies for children with type 1 diabetes who are in emergency situations. (An emergency situation may be defined as: loss of health insurance, loss of a parent’s job, or a local disaster, combined with the family having no other resources with which to purchase diabetes supplies.)

Diabetes supplies is defined as any of the following: blood glucose meter, blood glucose test strips, insulin, insulin pump supplies, blood or urine ketone strips, lancets, syringes, and glucose tablets.

Download and fill out this application after reviewing all the requirements on the website.

Blood Glucose Meters/Test Strips

Freestyle Promise Program - $15 copays and a free Abbott Freestyle meter.

  • Co-pay assistance is not valid for prescriptions reimbursed under Medicare, Medicaid, or similar federal or state programs or in Massachusetts.
  • Eligible patients are responsible for the first $15 of co-pay under their insurance coverage, and can receive up to a maximum of $50 in co-pay savings. Uninsured patients are also eligible for savings in most situations.

Contour Choice Program - For ContourNext test strips. Eligible patients pay the first $15 in co-pays each month. Insured patients can receive savings of up to $35 per month of co-pays using the Contour Choice Card.

Not valid for patients with prescription benefits covered by federal and/or state government programs (e.g. Medicare, Medicaid.)

Clinical Trials

Do not forget about participating in clinical trials, some of which provide monetary compensation in addition to supplies and medications at no cost. (Some also provide physician/medical visits!)

Please seriously consider participating in these trials - in some, you can get access to pumps or medications that would not be available to you due to cost - or FDA approval. And… you can help others (and yourself) through clinical trials.

Click here for a list of clinical trials for diabetes that are recruiting  (general, which include both Type 1, Type 2, LADA, MODY, and gestational).

 

 

Any other sites/supplies/organizations/medication programs that might be helpful to others? Help us!