The title of this blog post is a question that I was asked on a phone call with a member of my healthcare team. And the answer to it really stumped me.
On the one hand, I am extremely grateful to be employed with a workplace that offers a few choices in terms of a healthcare plan. I know that there are many Americans who are not as lucky as me and either struggle to afford medical care as needed or lack a job and/or health insurance altogether. It feels selfish for me to complain at all about my health insurance because I should just feel lucky to have it, period.
On the other hand, I’d be lying if I said I was 100% satisfied with my health insurance plan. I pay a lot of money out-of-pocket to cover the costs of all my diabetes supplies. I try to help mitigate the expenses by contributing to an FSA account, but it doesn’t do anything to lower the actual costs of my supplies: It just means that I save an amount equal to the taxes I would have paid on the money I set aside.
So when I was asked how I’d rate my health insurance plan using a scale of 1-10, 1 being the worst possible plan and 10 being the best possible plan, I didn’t know which side of the argument I should go with. I know that I certainly don’t have the worst plan – for the most part, I’m able to freely choose things like which insulin pump I want to use and which doctors I want to see – but I definitely don’t have the best plan. To me, the best plan would mean I don’t pay anything for the medications and supplies that I need in order to live, so I absolutely wasn’t going to give it a 10 rating.
Ultimately, I answered the question by giving my health insurance plan a 3. I am dissatisfied with the amount of money that I need to pay and wish that my plan would shoulder more of the costs, but the plan earns a few points for the flexibility it gives me in terms of who I see for doctors and for being consistent in the last couple of years that I have spent on it.
As I said the answer out loud, I couldn’t help but think and dream about the day that I might be able to give a health insurance plan a 10 because it covers all medical costs, is easy to understand, and provides freedom to choose any medications, devices, and doctors that I want. It’s a hope that I have not just for myself, of course, but for all Americans.
One thing that hasn’t changed in 2020 is the significance of tomorrow’s date: November 14th is internationally recognized as World Diabetes Day, a day specially reserved for diabetes awareness and advocacy.
Several weeks ago, when I realized this date was rapidly approaching, I was unenthused about it, to put it mildly. My life has been super-duper busy lately…I’ve dealt with high stress and anxiety levels, an overloaded schedule, and not enough time for self-care. So when it hit me that diabetes awareness month was just around the corner, and with that it would bring World Diabetes Day, I just felt “meh” about it. This year has been so sucky that celebrating didn’t feel right or something that I could muster up the energy to do.
However, that was before I realized that there’s a theme for this particular World Diabetes Day…promoting the role of nurses in the prevention and management of diabetes.
Nurses are heroes under normal circumstances. But in the context of 2020? They’re more important than ever. I read more about the reasoning behind the World Diabetes Day theme on the International Diabetes Federation website and immediately understood why nurses deserve recognition on 11/14:
Nurses currently account for over half of the global health workforce. They do outstanding work to support people living with a wide range of health concerns. People who either live with diabetes or are at risk of developing the condition need their support too.
People living with diabetes face a number of challenges, and education is vital to equip nurses with the skills to support them.
As the number of people with diabetes continues to rise across the world, the role of nurses and other health professional support staff becomes increasingly important in managing the impact of the condition.
Healthcare providers and governments must recognise the importance of investing in education and training. With the right expertise, nurses can make the difference for people affected by diabetes.
The International Diabetes Federation, 2020
So tomorrow, on World Diabetes Day 2020, I’m going to express my gratitude for all nurses, especially the ones who work specifically with people with diabetes. They deserve all the recognition and support in the world, and in a year in which the world is faced with a pandemic, the work that they do (along with other healthcare workers and essential employees) for people with and without diabetes is invaluable.
Thank you to all nurses and healthcare workers…and Happy World Diabetes Day to my fellow people living with diabetes. Wishing a wonderful day for you all filled with good blood sugars, education, and positive advocacy experiences!
On Wednesday afternoon, I signed a charter intended to bolster worldwide diabetes advocacy. The charter was launched by T1International and I’m sharing it here with you to encourage you to sign it, too. Here’s some more information on it, pulled directly from the T1International website:
Around the globe today, people with type 1 diabetes are dying because they cannot afford or get ahold of insulin, supplies, education and treatment.
To survive and live a full life, everyone with type 1 diabetes has the right to the following:
1. The right to insulin
Everyone should have enough affordable insulin and syringes.
2. The right to manage your blood sugar
Everyone should be able to test their blood sugar levels regularly.
3. The right to diabetes education
Everyone should be able to understand their condition, including adjusting insulin dosages and diet.
4. The right to healthcare
Everyone should have hospital care in the case of emergencies and ongoing specialist care from a professional who understands type 1 diabetes.
5. The right to live a life free from discrimination
No one should be subject to any form of discrimination or prejudice because they have type 1 diabetes.
In addition to magnifying diabetes advocacy efforts globally, the charter is also used to influence the actions of governments and organizations so that policies can be changed and the rights of people with type 1 diabetes can be prioritized.
It took me fewer than 30 seconds to sign the charter, and I put this blog post together in under 10 minutes. Join me by signing and spreading the word about it to help people living with type 1 diabetes have access to vital insulin, supplies, healthcare, education, and freedom that are necessary in order to survive and live full lives.
This blog post was originally published on the T1International website on April 10, 2020. I am highlighting it here on Hugging the Cactus because 1) I think it sheds a lot of light on the healthcare systems in other countries and 2) it’s a reminder that we’re all in this together.
Hear from ten people living with type 1 diabetes as they share their perspectives about the impact of the coronavirus on their country and their health.
Bolivia – Laura Things are complicated here, and our health system is already problematic. There are no masks and a lack of other correct equipment to treat patients. The government has been very careful about prevention, and quarantine has been going on for several weeks already. Many people are poor and live day by day with what they earn. The government began to give money and food aid to older people and families who receive other types of government bonds, but not everyone can receive it and many say that they do not have enough money to eat. Based on the numbers on our identification, we know when we can go out to get groceries or medications – only on specific days. Still, there is a lot of ignorance and people are not following instructions. There are 200 cases confirmed, with 15 deaths and it is increasing every day. People who have to travel long distances to get medicine do not have good options. I have a friend who has no blood glucose test strips and her blood sugar keeps going too high, but because she does not have test strips, she doesn’t know it. It is very dangerous.
Costa Rica – Dani Our small country is on lockdown, with only 10 people in ICU at the moment. The country is making at-risk patients a priority and currently even shipping their medicines to them to prevent them from going to the hospital and getting infected. Families have been given extra insulin for the next two months, and the community is supporting each other if there is an urgent need for support or extra supplies.
Germany – Katarina Germany has one of the lowest COVID-19 related death rates so far. A lot has been undertaken to prevent the virus from spreading – test centres have opened their doors to the general public, hospitals are increasing their capacities for intensive care and ventilation, and research teams are working hard to improve diagnostics, therapy and find preventative methods. The pandemic is challenging our healthcare system, our economy, and our society, but it also opening new pathways. A lot of diabetes care centres are transitioning to telemedicine, and people with diabetes can get prescriptions and supplies by mail. Being a doctor on the frontline and a high-risk patient at the same time is not easy – I am constantly torn between my profession and my wish to self-isolate and stay safe.
Ghana – Yaa With the rise in COVID 19 cases in Ghana, the government made it mandatory to close down schools for a month, to limit the number of people to no more than 25 in a social gathering, and to start a two week partial lockdown in contiguous districts (3 regions). This means no one is allowed to go out unless it is to buy food and drugs. Borders are closed, and importation of goods are restricted. For people with type 1 diabetes who get supplies at the government hospital using the national health insurance scheme, they still have to go all the way to the hospital for their supplies. The hospital is a major reservoir of the virus, so it increases the chances of people with type 1 who are already at high risk. The only other option is to go buy from the pharmacies, where there is currently a surge in prices. People with diabetes were asked and encouraged to stock up on their diabetes supplies, but not everyone was able to do this. We fear for the unknown and the long term impacts.
India – Apoorva As a medical doctor I have been working and seeing new cases, but now my entire department is in isolation. I took steps back to prevent getting sick. Delhi is one of the hotspots, and we had sudden surge in cases. Rural impoverished areas are problematic due to people living in close quarters. Our government initiated a lockdown, but many tried to leave quickly, especially migrant workers who come and go from the city centres because they lost their livelihoods. This caused the virus to spread despite drastic measures taken by the government. Currently, there are no insulin shortages as all medical services and pharmacies are operational, but we have seen a possibility of analogue shortages and hope to try to ensure that does not happen. Our main aim is to support the actions of the government and I plead everyone to stay home and protect their families.
Kuwait – Mohammad We have been on lockdown for four weeks, and people who came to Kuwait from other countries were tested. If someone had symptoms, they were put in quarantine. Cases have been contained and so far, there has only been one death. It is interesting that there is now a COVID-19 database that was created rapidly, but there has never been a database of people with type 1 diabetes in Kuwait. Our medications tend to be provided and some are being delivered. Overall, things are OK now, but we are concerned about access to medication and food supply in the long term because most of it is imported.
Lebanon – Cyrine Our country has been facing tricky political problems for the past five months, since we had a revolution in November. The banks have no money, and there is no money from the government. We can only have access to a specific amount of our money per month. We are facing shortages of medical supplies including ventilators and medical protective equipment. The whole country is in an emergency state now and there are military personnel on the streets. As cases continue to rise, people are only allowed to go out at certain times and we can only walk. I have been on self-quarantine for the past few weeks. What worries me most is the people who already struggled to afford their basic insulin and supplies. With 80% or more of the population having lost their jobs, what are those who cannot afford their insulin doing now? I am trying to help those I know about, but there is no government plan for people with type 1 diabetes. People do not have money anymore, so how can they cover their insulin costs?
South Africa – Estelle Testing here is slow. On April 2nd, I heard only 46,000 tests had been done, which is not even 1% of the population. It looks like we have small numbers of diagnosed patients but there is so much unknown. Apparently there is enough stock of medication for up to a year. Medical aid, our version of insurance, said they will cover all treatment related to COVID-19, so that is a relief. A large proportion of individuals might not be taking it seriously enough. The biggest concern is keeping the virus out of the rural areas, which are densely populated. If it spreads there, it could be catastrophic because we do not have enough hospitals.
Tanzania – Johnpeter We only have about twenty cases identified so far. I am currently in Serengeti which means I am far from cities where cases were confirmed and spreading. I am staying put and I had to cancel my doctor appointments and other appointments. I have had to reduce my insulin dose because I cannot get any insulin here in this rural area. I have some insulin in Dar es Salaam that my doctor gave to my brother for me. So right now I am working with my brother to try to find a way to get the insulin. I am not supposed to travel to cities to risk my health, but I am risking my health by staying here without insulin. It is incredibly stressful on top of the challenges I already face accessing and affording my insulin.
USA – Karyn In Georgia, where I live, we are also on lockdown, with cases increasing every day. The biggest issue is shortages of ventilators and protective equipment for hospital staff. Cost and affordability issues are already a problem in the USA and this will likely be an even bigger challenge now. Due to the broken healthcare system here, it’s uncertain if people will even get tested if they go to the doctor. Some people are getting billed for the test even though it has been said they shouldn’t be. Last year around this time, I went to Canada to buy a year’s supply of insulin. I have a bit more, but I’m not sure what I’m going to do without being able to travel abroad this year. I already struggle a lot with the costs. Many people are losing their jobs, and therefore losing their insurance, which will inevitably also impact their ability to afford essential medicines.
Just over 365 days ago, I made the switch from my parents’ health insurance plan to my own plan, provided by my employer.
In the last year, I’ve learned some important lessons about being responsible for my own healthcare coverage. Some lessons were easier to learn than others. I figured it might be helpful to others who just made the switch themselves (or who will be doing so in the near future) for me to sum up three big takeaways I’ve discovered along the way in the hopes that it makes the transition a little easier for those individuals, or at least saves them some time down the road.
Take advantage of a flexible spending account (FSA), if the option is available. I grew up knowing that FSAs exist – my parents would always bring their FSA account cards to all my doctor’s appointments and pay for all of my supplies using those cards – but I had no idea what the big deal was about them until I switched to my own health insurance plan. Basically, FSAs are a great employer-sponsored benefit because they allow account holders to pay for eligible medical expenses on a pre-tax basis. So those who have an FSA are able to pay for things they need tax-free, and the money is typically available to account holders on the first day of the health insurance plan year. My current health insurance plan allows a maximum contribution of $2,300, so I was able to put up to that amount on my account for 2020. It really comes in handy because my wallet doesn’t take as much of a beating from all of my necessary (and very expensive) diabetes supplies, and unlike the last half of 2019, I’m not paying as much out of pocket after my deductible is met.
Keep records of everything. It might seem fussy to hold onto any and all receipts or transaction records, but there might come a day when one is needed. Case in point? At the end of 2019, my company announced during open enrollment that our FSA administrator was changing…which, at the time, I didn’t think was a big deal. I knew what the maximum contribution was, and I figured I’d only need to log into my FSA account sporadically to see how much money I had left for the year. Well…I was wrong about that. Back in February, I got a notification that I needed to submit verification of purchases of my regular OmniPod shipment, Dexcom sensors and transmitters, and my Humalog prescription. And you can bet your bottom dollar I didn’t have receipts for all three of those transactions because, well, my old FSA provider never once asked for receipts. As silly as it sounds now, I guess the thought never crossed my mind that my new FSA administrator would need purchase records. Long story short, I was able to submit an explanation of benefits in lieu of the receipts, but it would’ve been easier just to hold onto the original records (and I can assure you I’ve done that since this whole incident).
Don’t be afraid to ask questions when things don’t add up. I had my annual physical in January and I had quite the shock when I was billed over $300 for all of the lab work that my primary care physician had me do. The moment I got that charge, I knew something wasn’t right – never before in my life have I been charged that much for a standard battery of tests that I take for my physical. So I wrote in to my PCP’s billing department and asked about the charges. That’s when I learned that I was mistakenly charged this amount and that I needed to reach out to my health insurance provider to re-run the charges. Although it was a little annoying to have to go back and forth between my health insurance provider and my PCP’s office, it was worth it because I saved myself $300 that I never actually owed in the first place. This taught me the importance of asking questions and following up with people until I understand, well, anything that’s confusing to me when it comes to my health insurance.
Do you have diabetes and will turn 26 in the near future? Will you be forced to switch from your parents’ health insurance to your own plan? If the answer to both of those questions is “yes”, then you’ll definitely want to take a minute to read my tips on how to make the transition as smoothly as possible. And even if you answered “no”, you still might find this to be a worthwhile read because chances are, either you or someone you know will have to go through this process, whether or not you/they have diabetes.
Here are the three most valuable tips I have for anyone who just turned, or is about to turn, 26 years old and is concerned about switching health care plans:
Tip #1: Ask your doctor for copies of all of your prescriptions. Do this well before your actual birthday. That’s what I did, anyways – I had a scheduled appointment with my endocrinologist at the end of April. That’s when I requested a copy of every single prescription she’s ever written for me, including for medications that I don’t really use anymore (e.g., Lantus, the long-acting insulin I used prior to my insulin pump). Then, I made multiple copies of these prescriptions, taking care to separate the originals from the copies. This tip really came from my mother, who told me that having the prescriptions now would save me trouble later. And she was right: When I did send in my Humalog prescription to Express Scripts, I did so with more confidence because I didn’t have to scramble to request it from my doctor.
Tip #2: Start the process of reordering supplies as soon as possible. Even if it means starting to reorder things on your actual birthday…do it. I’d say this is especially important if you’re running low on supplies. It took me nearly two months to start receiving stuff. Part of this was my fault because I procrastinated, and was also at an advantage because my mother took the time to order me plenty of extra supplies before I made the switch. But it was also the fault of the companies I was ordering from, who, for various reasons, didn’t send out my supplies on time or needed a longer period of time to review my orders before shipping them out. I’m lucky that I can say that I was never truly worried that I was going to run out of supplies, but the thought did cross my mind a few times, and it was unpleasant. So save yourself from aggravation and just get the ball rolling as soon as you can.
Tip #3: Keep records of everything. I keep a physical folder that contains receipts, prescriptions, photocopies, notes, and various other documents related to my health. I can’t say for sure what I’ll actually need to keep or throw away in the coming months, but I do know that it’s smart to hold onto this stuff in the beginning. That way, during my company’s next open enrollment period, I’ll be able to make informed decisions regarding things like how much money to put in my flexible spending account (FSA). Plus, any notes that I’ve taken during phone calls have already proved immensely helpful as I’ve needed to track down specific customer service representatives in order to take care of issues that have come up. It can be a little cumbersome to remember to keep all these papers, but I know it’s the right thing to do and that there’s no way that I’ll regret it.
BONUS Tip #4: Advocate for yourself until you get what you need. At first, I felt extremely awkward for calling Dexcom and Insulet every single day for a week. But then I realized that I shouldn’t. They weren’t going to make sure that I had my supplies: I had to depend on myself to do that. I also felt a bit stupid asking just about every customer service representative that I spoke to how everything works, but I eventually got over that, too, because it’s vital to understand this stuff, even when it seems extraordinarily complicated. So I’d tell anyone who’s going through this process, or who is about to go through it, to keep up the hustle. Don’t ever feel shame for asking too many questions or calling too many times; when it comes to all this, the limit doesn’t exist. Ask others for help when you need it (I spoke with all sorts of people in the DOC about my issues, and goodness knows that my mother provided me with all sorts of advice and support throughout this) and, with their assistance and a little determination on your part, you’ll get through this tiresome transition.
Well, today is my 26th birthday. As I alluded to a few months ago in another blog post, I’ve pretty much been dreading this particular birthday.
Today’s the day I’ve got to switch health insurance carriers. I’m going off my parents’ plan and signing up for the employee plan offered by my company.
Am I nervous? Yes. Am I scared? Hell yes. But am I alone? Hell, no. I’m lucky enough to be able to say that I’ve got so many resources in my life – family, friends, the DOC – who will help me navigate the confusing world of health insurance.
I’m also well aware that many, many other T1Ds have been in this position before me. While it’s impossible to forget the horror stories about people who have been unable to afford their medication due to a lack of insurance coverage, or who have a hard time paying for insulin and other diabetes supplies in spite of having health insurance, there’s so many more people who have found ways to make it work without having to sacrifice their health or general well-being.
So I’m going to focus on how blessed I am to have resources all around me, as well as a job that offers decent health insurance (or just a job, period…there’s plenty of jobless people out there who have double the hurdles to jump over compared to someone like me). Today, I won’t dwell on my fears and anxieties about health insurance. Instead, I’ll celebrate another year of life and enjoy the day.
This blog post is a response to a prompt provided by my friends at the College Diabetes Network, who are celebrating College Diabetes Week from November 12-16. Even though I’m no longer in college, I like to participate in CDW activities as much as possible to show my support for the CDN!
Most people who know me understand that I have a bit of the Peter Pan syndrome going on – I don’t want to grow up. I’d rather embrace my inner child and shun the responsibilities associated with adulthood. That’s what I’d like to do, anyways.
But the harsh reality is that I’m a woman in her mid-20s who does, indeed, have quite a few responsibilities in life. In addition to the gamut of obligations that most other adults have on their shoulders, I have an extra-special one – yup, you guessed it: diabetes.
I didn’t realize just how much my parents managed my diabetes until I got to college. Suddenly, it was on me to make sure I had enough supplies at all times, to make doctor’s appointments for myself when I wasn’t feeling well, and to do basic things like feed myself regular meals. It doesn’t sound like much, but when you’re adjusting to college life, meeting new people constantly, and making your own choices as to how you spend your spare time…then it becomes a big deal that can feel overwhelming at times.
The shift in responsibility was tough at times, but I made the adjustment and learned to hold myself and myself alone accountable for all aspects of my diabetes care and management. And I’m starting to prepare myself for yet another big change coming in about six months. On my 26th birthday, I’m going off my parents’ healthcare coverage and will need to enroll in my company’s plan. There’s going to be a learning curve there as I discover what will and what won’t be covered under my new plan, and I’m teaching myself to accept it. After all, it’s unavoidable, so like everything related to diabetes, I’m just going to choose to embrace the challenge with a smile on my face.
Today is the Fourth of July! I’ll be spending the day in our nation’s capital. While I’m not entirely sure what the day will bring, I do know that I’m bound to feel a swell of patriotic pride, as I imagine the vibe of Washington, D.C. this time of year oozes red, white, and blue.
As much as I love my country, I still think it has a long way to go. I promised myself I would refrain from getting overly political on my blog (for many reasons), but I will say this one thing: Many things about healthcare in America need to change. I found an article on the New York Times recently that opened my eyes to the dire state of the global insulin crisis. Here are some facts from that article:
One in four patients with diabetes are cutting back on insulin because of cost.
The typical cost of one vial of insulin is $130. One vial of insulin lasts no more than two weeks for a person with diabetes.
There is no generic form of insulin. This means that prices skyrocket since there is no competition among generics.
Why is this happening? Why do families find themselves being forced to choose between feeding their families or affording life-saving medication? It’s unacceptable that profits are valued over life in our great nation.
Things need to change. The politicians and policymakers who have the power to make right and just changes need to take a good, hard look at Americans who are crying out for help and struggling to simply live.
This topic is worthy of thousands more words, but I’ll leave it at that for now. Maybe it will open someone else’s eyes, too.
For now, have a beautiful Independence Day doing whatever it is that makes you feel free – and be safe!