Category: Top Posts (The “Must Reads”)
The KISS of Diabetes Advocacy
Find your excuse.
- I don’t have enough time to commit to something that big.
- I have no idea where to even begin.
- I won’t make a difference.
- I’m too shy to speak up.
- I’m afraid I’d say something stupid.
- Someone else will do it.
Do any of these reasons not to advocate for diabetes hit home with you?
Once upon a time, I believed them all. (Well, except for the shy excuse. I’m a little bit of an extrovert. Just a tiny smidge.) Advocacy was this nebulous concept that was done by people who knew what they were doing and that was perfectly fine with me. Let the experts advocate for diabetes. Good for them! They would get something done and I would reap the benefits.
The truth is so very different. Those excuses listed above are balloons… and I am going to help you pop every one of them and show you The KISS of Diabetes Advocacy.
(No, this is not The KISS of Diabetes Advocacy.)
Let’s get The KISS out of the way first.
The KISS of Diabetes Advocacy is this:
Keep
It
Simple
Sweetheart (or Stupid, but you’re not, so it’s sweetheart, so there.)
Keep that in mind while we pop the balloon excuses…
I don’t have time to commit to something that big.
You can be a diabetes advocate in less than a few minutes a day. We showed you that it can be done in about two minutes (or even less.) At the MasterLab held at CWD’s Friends for Life, a three step plan was laid out for you on one webpage. Click, click, click and you’re set with the Diabetes Action Hub. Three quick things to start.
(Take a survey, send a quick email to your representative about two bills that will help all people with diabetes, and sign up to get notified about advocacy actions that you can take in the future.)
You do what you can. No one is asking you to chuck your job and go on the road, stumping daily for diabetes awareness or reimbursement. No one is asking you to spend your days in a monkey suit, waiting in corridors to spend a few minutes with an aide for your Congressperson. Pick what is important to you, but don’t do nothing. You can make a difference in a few minutes per day.
I have no idea where to begin.
The American Diabetes Association does an outstanding job with explaining how easy it is to advocate for diabetes. It’s a great primer if you have no idea where to begin. It’s a great starting place. If you don’t even know why you should advocate. you can look at the list of federal priorities that the ADA has set out to accomplish this year (all very ambitious, and all need help from people like us).
I won’t make a difference.
Think so? You do. Every letter that is written, every call that is made, every tweet, every visit raises awareness of what diabetes is, how it impacts us, and what we need to be healthy. We saw the difference over 300 of us made when we voiced our comments on the accuracy of blood glucose meters to the FDA. Can you imagine what 3,000 comments could do? 30,000?
In the 80s, I threw my insulin, syringes, meter, and strips in my backpack and tra-la-laed my way down the halls of my school. Needed to check? I pulled out my meter. Needed to take an injection? Pulled out a syringe and did it myself. To do that today would have the administration of any school screaming, some more loudly than others. Imagine not being able to have anyone besides a nurse administer insulin or glucagon to your child or someone you love in a school. It was happening in California. Advocacy changed that. It took eight years, but now trained personnel can help in schools without a nurse present.
Every time you share the difference between Type 1 and Type 2 diabetes, or explain what insulin does, or why you can eat that donut, you are advocating for diabetes awareness. Want to rattle off some statistics? Easy. Here is the full list, but you can memorize this one from the CDC:
If current trends continue, 1 of 3 U.S. adults will have diabetes by 2050.
If that doesn’t freak you out, I’ve got others. Let me know and I’ll send them to you.
Talk about diabetes. The one smart thing I said at MasterLab was this: “Advocacy begins with you.” And by you, I mean you.
I’m too shy to speak up.
Then don’t speak. Write your congressman. Write an article in your community newspaper. Tweet important information and disseminate advocacy actions to others. Do art that can be used in presentations at hearings and meetings that make an impact.
Diabetes Art Day images surrounded Manny Hernandez and me at the Diabetes Technology Society meeting last September. It made an impact.
People who advocate “behind the scenes” do important things. Put a walk team together. Help raise funds for research or technology that will help improve the lives of people with diabetes. You don’t have to shout with a megaphone to get your voice heard.
I’m afraid I’ll say something stupid.
Know what’s stupid?
Not saying anything and accepting the status quo.
Was that blunt? As blunt as my lancet is right now because I haven’t changed it in a while.
If you get the facts, understand the players, and find out what your passion is, you won’t be stupid and nothing out of your mouth will be stupid.
What bothers you most about diabetes? Good. That’s your passion.
Then google information about your passion and get information about the facts surrounding it and the key players. (And by players, I mean your fellow advocates or advocacy groups and the people you will need to influence to change the status quo.)
Once you’ve got that, work with your fellow advocates to change the status quo.
Someone else will do it.
That was my biggest balloon excuse. It was so big that it carried me up into the stratosphere for years and years. And then something happened.
And then…
And then…
I recognized that even people who should know the difference didn’t.
There was no moment in which I decided to advocate. When I realized that I needed to speak up for myself and then for those who couldn’t speak for themselves, it was a no brainer. There is so much to do in the world of diabetes advocacy, so much status quo that needs to be shaken, that I now wish I could do it all.
Which brings me back to The KISS of Diabetes Advocacy. (You thought I had forgotten, right?)
Keep It Simple, Sweetheart.
Start small. Sign up for advocacy alerts. Pick something that that you want to see change. Send an email or a tweet. Ally yourself with others who share that want for change.
If that all feels good, then flex your wings and step outside your comfort zone. I quaked in my heels as I stood in front of a panel of people in Bethesda last year, asking the FDA representative what it would take for them to pull an inaccurate meter or strips off the market. My heart pounded in my throat (where it shouldn’t ever be) and I was sweating, but I wanted to let them know I wasn’t accepting the status quo.
We can all be advocates. Come join us. We need your help.
The Other Invisible Disease
“Get on a plane and just disappear.”
That was the first thought that popped into my head that morning, eighteen years ago.
Get in the car, get to the airport, purchase a ticket, and go.
Where?
It didn’t matter.
Do what when you got there?
Didn’t matter.
Nothing mattered.
From the outside, my life appeared fine and dandy. A successful career, family close by, disposable income, and a sweet loft apartment.
I was miserable.
Invisible
Much like diabetes, depression is invisible - and misunderstood.
Those who say: “Snap out of it. You’ll feel better tomorrow,” or “What’s to be depressed about?” may not be aware of the biopsychosocial model of depression.
The biopsychosocial model (abbreviated “BPS”) is a general model or approach positing that biological, psychological (which entails thoughts, emotions, and behaviors), and social (socio-economical, socio-environmental, and cultural) factors, all play a significant role in human functioning in the context of disease or illness.
Even if you look like you have it all together, if there is a biological maelstrom inside your body, you’re already behind the eight ball. A decrease in the amount of neurotransmitters that help the synapses in your brain (and keep those synapses firing on all cylinders) can be part the depression component. Studies have shown that individuals prone to depression have different brain structures or overactive portions of parts of the brain. No one can control brain structure or the amount of neurotransmitters coursing through our bodies. It’s pure biology.
There are other factors: how one deals with stress, what kind of stress the person lives with or is given, triggers for stress, how we perceive the world and even where we live. The biology of our body/brain plus the outside influences can send the average individual into a spiral. “Snapping out of it” just isn’t that simple.
Sinking
Very few people knew I was sinking. While I was isolating myself, I told everyone that I was swamped with work. (I worked from home, so it wasn’t like anyone could tell that I wasn’t.) In truth, work started piling up. I traveled often, but kept putting off trips. Phone calls weren’t returned to clients and if they really needed a response, it was via email so I wouldn’t have to talk. I didn’t want to talk to anyone.
New Year’s Eve was spent alone, after turning down a few invitations to go out and celebrate. Celebrate what? Another year of feeling miserable? It’s not like anything was going to change. Why bother? I ate leftovers and played video games online.
I felt hollowed out, like I was a pumpkin carved and discarded. Things that once brought joy brought nothing. No emotion. Apathy. I cried myself to sleep at night. I barely ate. Even when I was forced to go out, I was the snarly, sarcastic bitch in the group of people. (There’s always one, right?) I preferred just being alone, because no one could see how lackluster I had become. Misery doesn’t love company. Misery wanted to be left alone.
That morning, I got up and made coffee, sat on the windowsill, and sobbed. I wanted to run away and if I wanted to truly do so, I could. I could just disappear. But I didn’t have anywhere to run to. And I would still be miserable.
Dancing with Depression
I made a phone call and within two hours, I was sitting in a psychiatrist’s office with a prescription in my hand and a diagnosis of “severe” depression. Over the next few months, that office became a refuge and a place to share my thoughts about my life and my future.
Diabetes was discussed in depth: the suffocation I felt when I thought about living with this disease for the rest of my life, the damage that I had done with diabulimia, how I felt that I could never settle down with someone because I didn’t want to burden him, and the day to day grind with a chronic illness. We talked about how diabetes and depression were often intertwined (for the reasons mentioned above). We talked about how I needed to find some peace with the war I was waging with my diabetes.
Cognitive behavioral therapy is often used to help those with depression in conjunction with medications. The first antidepressant that the psychiatrist prescribed caused night sweats, nightmares, and paranoia… so I was quickly switched to another popular one: Prozac. (It is found that those with eating disorders should shy away from Prozac, as it suppresses appetite. I’m no longer on it…)
I slowly stopped sinking and stopped looking for the nearest exit from a room to get away. I began talking to people and clients again and one day, I laughed, startling myself. I hadn’t laughed spontaneously in months. My life wasn’t better, but it was sucking less.
But the dance with depression wasn’t over. I made a very big mistake. I eventually felt so good and so even keel that I decided I didn’t need to take the antidepressants anymore.
I tapered off the medication that had kept me buoyant while I moved several states away. I sold most of my possessions and decided that I would start anew with a fresh attitude, accepting an offer to move into my parents’ home in Florida to soak up sunshine and continue my career. My parents were traveling all summer, so I had the house to myself.
Perfect. New job, new acquaintances, new life… same old me.
Deeper Than Before
Unlike last time, I was interacting with people and going out. I was gregarious and downright charming. I was dating and making friends.
And then I just collapsed internally.
On a sweltering day in late August, I stood in a fashionable business suit in the middle of downtown and called my father on his cell phone.
“Help.”
That was pretty much all I could get out before I began to quietly sob. The conversation was quick and my father made me promise that my next call would be to a psychiatrist for an emergency session.
He flew home from his vacation the next day. I only left the house to go to the doctor for a few weeks. I took a medical leave of absence from the new job I hated and never went back. After I began feeling emotionally better and the medication finally kicked in, the real work began.
It Never Ends
The real work is this: an understanding that some people have one or two depressive episodes in life, others never get clinically depressed, and others (like me) have dysthymia/ persistent depressive disorder which is the medical term for “chronic depression”.
It’s quite popular amongst those with a chronic health condition. (Thanks, Harvard, for giving me this great quote and link to the research.)
At least three-quarters of patients with dysthymia also have a chronic physical illness or another psychiatric disorder such as one of the anxiety disorders, drug addiction, or alcoholism.
For people like me, understanding that I am more susceptible to depression due to a chronic illness - or biology - neither of which I can run away from, actually helps. Spending time with therapists who understand the weight of living with a chronic illness and working through cognitive behavioral therapy (CBT) techniques has made a difference. A book I recommend, if you’re interested in CBT is The Feeling Good Handbook. It’s pretty amazing and the workbook aspect of it really helps to make the exercises customized just for you.
And antidepressants? Yes. Please. After a few misses, I have found a drug combination that works wonderfully. Just like I take insulin daily for diabetes, which is a chronic illness, I take antidepressants daily for the other chronic illness. I’ll take them both daily for the rest of my life.
Just like diabetes, I have my sucky days, even with medication. They don’t last long and they’re not soul crushing like before. I talk about what makes me frustrated or depressed with those close to me and it helps. If I feel like I need to seek professional help, I go. It’s hard to take the first step, but it’s worth it.
Invisible
I’ve had times in my life that I didn’t want to share my diabetes diagnosis. I look fine, so why bring it up, right? Keep diabetes invisible and no one is the wiser. Except that doesn’t work.
No one seems to want to talk about a depression diagnosis, as if talking about it makes you seem weaker. Keep depression invisible and no one will think you are weak. That doesn’t work either.
We don’t talk about depression mixed with diabetes enough. The community is only now beginning to understand that living day-to-day feeling frustrated and sad and angry and despondent is part of diabetes that contributes to depression. This month is Mental Health Month and people with diabetes have opened up about the fight to stay healthy - body and mind. There are some wonderful posts about “diapression”, which is the term that has been coined to connote diabetes and depression. I urge you to review the Diabetes Advocates page on depression and diabetes for these posts and resources.
It took me almost the entire month to get up the guts to think about how these two chronic illnesses have made an impact on my life. Thanks to Scott Strange of Strangely Diabetic for reminding me that we all need to talk about this.
If You Have Diabetes and Feel Depressed
Do you have the symptoms of depression, like the ones I mentioned above? If you do, breathe, then pick up the phone and call someone who you trust. Tell them about how you feel.
It’s OK to ask for help. You will be OK. There are ways to treat this and you just need to take the first step. (Let me know if you can’t tell anyone. Send me a message at the perfectd [at] gmail.com and I’ll get you to the resources. You should never, ever feel alone.)
* After posting this, a few comments made me realize that I never clarified that the major depressive episodes I’ve had were almost twenty years ago. They make them no less relevant for me - or you - today.
But for those who expressed their worries… I’m good now and have been for quite a while. Antidepressants and good therapists keep me sane. So does the DOC.
And the bitchy moments I have? Can’t blame that on anything but my personality these days. Turns out you can be happy AND bitchy. You say bitchy like it’s a bad thing. :)
This Is Not A Contest…
If you don’t know this by now, I’m here to tell you.
Diabetes is not a contest.
There are no grand prize winners, no consolation prizes, and no picking what’s behind Door Number 2. You can dress up in a silly costume, but a game show host will not be selecting you to jump up from your seat in the studio audience.
And yet, I see that some people with diabetes trying to make it seem that way on social media.
I belong to a number of groups on Facebook that focus on diabetes. Some groups provide wonderful articles from reputable sources while others, promoted as a place of support, are crammed full with pronouncements and requests for advice.
“What’s the highest your blood sugars have ever been?”
“What’s your lowest recorded blood sugar?”
“How much insulin do you take each day?”
These are questions that pop up frequently on my newsfeed and the answers are almost boastful.
“1125!”
“18!”
“I take 150 units of Novolog every day…”
I’m curious as to why these people ask (and answer) these questions. Is it because they feel the need to compare themselves to others with diabetes? Are they better than others? Worse off?
Diabetes is not a contest.
Yes, sometimes we play the “Guess my blood sugar!” game with a friend or family member. (John always wins that one in our house; I think he cheats.)
We take bets daily on which dosage will be the right amount to keep blood sugars within range. Sometimes we take a chance with our blood glucose meters. I’ve played chicken a few times with my diabetes management, and I’ve always come out the loser. Some are diligent and still come out losers. But it’s not a contest, right?
We may try to game our disease, but there are too many slots on the roulette wheel to say for sure where that ball will land… and you know that the house always wins in the end.
And in the end, the quality of life for all of us is compromised because of a disease that doesn’t let us win, but we do get to have the play at home version as a lovely parting gift.
Diabetes is not a contest.
There are no right answers. No buzzer at the end of the round with commercials from our sponsors.
Every individual with diabetes is different and while some may be coherent (barely) at 35 mg/dl, others may have long lapsed into unconsciousness. Those wandering upright with highs over 500 mg/dl are not to be scorned or lauded; they need help to bring their blood sugars back into range. It doesn’t matter if you take one unit or 1,000 units of insulin per day - whatever you need to keep you safe and alive is what you need.
I have never hid my A1C struggles. My current is 6.7%, up from a low of 6.3% last year. I don’t get a medal for that, just as I don’t get a medal for the A1Cs in the teens during my high school years. My A1C is a signpost and I have a choice to make every day on how I handle my blood sugars and my diabetes.
Some people with diabetes share their A1Cs in an effort to show others that they’ve been working diligently at making positive changes in their lives. These PWD talk about those positive changes, giving their take on their own struggles. I love reading these posts, because this is the reality of diabetes.
Those who, and I’m judging a little bit here, boast about how they’ve never had an A1C over 6.0% because they take care of themselves… well, I can do without the gloating. (And they seem to never give the “how” of how they keep it at 6.0%, more of a “I just follow the rules…”.)
Diabetes is not a contest.
It’s not a reason to get incensed when an unsuspecting stranger makes a comment that blatantly shows they do not understand the nuances of the disease and its many iterations. I see these posts far too often:
“How dare they tell me that I can’t eat [insert food here]! They don’t get it at all!”
“That mother has NO idea how difficult it is to parent a child with diabetes!”
“I hate that the public thinks we all have Type 2 diabetes! I want to change the name so that they will know it’s different!”
Well, this is, as a former supervisor would say to me, “an opportunity to excel”. Turn the rage into a teaching moment. Rather than getting all indignant and stirring up others who feel like we’re misunderstood, take a moment and breathe, then say:
“Diabetes is a complex disease. There are different types and different ways to treat the disease. If you have a moment, I’d love to tell you a little bit about it, so that you can help others learn.”
And you can change the name of a disease all you want… it will still be the same disease with the same misperceptions. You’ll just spend more time hollering into the blackness about how the name is different.
Diabetes is not a contest.
It doesn’t matter in the end what diabetes you have. There are preconceptions and misconceptions about both types from the general public and even from within the diabetes community. Have you seen these quotes before?
“That person asked me if I have the bad kind of diabetes!”
“She told me that my diabetes must be severe if I have to take shots!”
“Type 1 diabetes is far more difficult to manage than Type 2!”
“Type 2 is an obese disease. Type 1 isn’t.”
Long term, we all are hunched over from the weight of complications that pick at every part of our bodies. Our pancreases don’t work properly. All diabetes is bad. All diabetes is severe. All diabetes is difficult to manage. And guess what… both types of diabetes can be “obese” diseases.
I am living proof that you can be fat with Type 1 diabetes. I know many people who are thin as rails with Type 2.
Why are we trying to prove to ourselves and others that one type of diabetes deserves more pity or money or time or effort or public awareness?
Diabetes is not a contest.
It’s a disease.
No one wins.
The Diabetes UnConference - March 12 to 15, 2015
I’ve been keeping a secret from you.
It’s a good secret, but a lot of work needed to happen before I could share this…
To admit that I’m scared that this will be a colossal fail and that no one will want to come would be true.
I hope that I’m wrong.
I hope that this will be everything that our community needs and wants and that this will be the beginning of something amazing.
This has been a long time coming.
The original idea was simply a wish that I frequently uttered quietly (often to myself) at the end of diabetes conferences or meetings:
“I wish that we could just sit and talk about living with diabetes and how we feel about living with it. Share with each other. Learn from each other.”
I articulated this wish at the Medtronic Diabetes Advocacy Summit in January during a brainstorming session about what each of us wanted to accomplish for the diabetes community.
“No tracks to choose. No keynote sessions. No separation of people by category or type. Real discussions in a safe place about the psychosocial aspects of our lives with diabetes with others who get it. We decide what we want to talk about - and then we talk about it.”
There were nods in that room (and one or two exclamations of “Hell, yes!”). I left that meeting with a head full of ideas about this… but I couldn’t do it by myself.
That’s what a community does. It helps, supports, and celebrates. With some gentle prodding from some advocates and the amazing emotional backing of my husband, I quietly created The Diabetes Collective, Inc., a Florida non-profit corporation (currently waiting for the IRS to bestow that 501 (c)(3) designation) and signed a contract with Caesar’s.
It’s on. It’s begun.
Please read below - and share the excitement with me for The Diabetes UnConference.
If you are an adult with diabetes, come join me (and others just like me and you) in… Las Vegas from March 12 to 15, 2015.
I would love to meet you and learn from you and others about living well with diabetes.
Come on.
Vegas, baby.
Here’s the official announcement.
The Diabetes Collective, Inc. is pleased to announce The Diabetes UnConference, the first peer-to-peer support conference for all adults with diabetes.
The Diabetes UnConference will be held at the Flamingo Las Vegas from March 12 - 15, 2015.
The first of its kind, The Diabetes UnConference follows the “unconference” concept of peer-to-peer idea exchange made popular by the tech community. The actual agenda is set the first morning of the conference, drawing from the needs and desires of the attendees and discussions will focus on the psychosocial aspects of living with diabetes.
Manny Hernadez, co-founder of TuDiabetes.org and winner of the Community Spirit Award from the American Diabetes Association, states: “Life with diabetes is challenging enough to go about it on your own. Peer support is essential to thrive for people with diabetes. It is also critical to help us build the kind of movement we need to have around this condition that affects more than 26 million people in the US and 400 million people worldwide.”
Founded by Christel Marchand Aprigliano, The Diabetes UnConference is facilitated by volunteers well known to the diabetes community: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott K. Johnson, George Simmons, and Kerri Sparling. These diabetes community leaders are familiar with the topics that will be covered; each live with diabetes.
Topics may include dealing with depression and diabetes, countering burnout, diabetes “life hacks”, dating, parenting with diabetes, revealing your diabetes to others, and much more.
Peer to peer support has been shown to be highly beneficial to those living with diabetes. The report, “Peer Support in Health – Evidence to Action,” summarizing findings from the first National Peer Support Collaborative Learning Network shared that: “Among 20 studies of diabetes management, 19 showed statistically significant evidence of benefits of peer support.”
For more information and to register, visit www.diabetesunconference.com.
Need Help With U.S. Diabetes Supplies and Medications?
For 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!
