I attended a Massachusetts #insulin4all meeting recently that got me thinking about how good people with diabetes tend to be at minimizing.
I speak for myself, and some other people with diabetes I know, when I say that we’re really good at making it seem like it’s not a big deal. We manage a 24/7, 365 chronic condition like it’s not the full-time job that it is. I have family and friends who occasionally pick up on this and marvel at my ability to be present in a myriad of social situations while discreetly watching my blood sugar levels or calculating insulin dosages. I rarely act like diabetes is as serious as it is and that’s because I’ve become an expert at making it seem like small potatoes in my life.
And I’m not just good at minimizing my diabetes – I’m also highly proficient in minimizing the fact that it has forced me to make difficult decisions in my life, particularly when it comes to financial choices.
During this #insulin4all meeting, I was conversing with other chapter members about whether or not we, as individuals, have struggled to afford insulin. And a lot of us confessed that we’ve been pretty lucky and have never really had to resort to making truly difficult choices when it comes to affording insulin or other diabetes supplies. Despite that, we feel passionately about those who struggle to gain access because we understand how high the stakes are – it’s literally a matter of life or death.
But just because we’re able to (for the most part) afford insulin, that doesn’t mean that we haven’t had to make certain choices that we might not have had to make if we didn’t have diabetes.
For example, when it comes to my career, I’d never consider a job that doesn’t offer solid health insurance plans. Even if my strongest desire was to be a freelance writer, I wouldn’t go through with it because I know that it would be challenging to figure out my health insurance. And I know that the minute I run out of FSA dollars each year, I start thinking about setting money aside just to cover the costs of my diabetes supplies…which means that instead of buying some new clothes or planning a weekend getaway, I sometimes have to sacrifice those luxuries in favor of ensuring I have enough money to cover my fixed expenses as well as my diabetes medications.
When I think about it, of course I realize that it’s not fair, but haven’t really considered it before because this is just how it is. I’m used to it. And so are many other members of my #insulin4all chapter. We’re all accustomed to having to make certain choices about our lifestyles or spending habits that minimize the larger issue of insulin affordability. We’re used to it, even accepting of it, but that doesn’t make it right and it certainly underscores the terrifying fact that too many people simply can’t afford insulin and have to make much tougher decisions in order to get it.
It’s time to become a little less good about minimizing and better at vocalizing – not just the seriousness of diabetes, but also the dire nature of insulin affordability and access that affects millions around the world.
This post was originally published on Hugging the Cactus on March 13, 2020…coincidentally, the first day of the pandemic that I started to work from home. I decided to repost it today because even though so much has changed in the last 365 days, the fact that so many people know so little about insulin remains the same. I think that if the world knew these 3 things about insulin, then it would go a long way in understanding how it is vital to most types of diabetes care and treatment, and people might finally realize that something must be done about insulin accessibly and affordability.
See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?
It’s kind of crazy, right? But besides knowing that insulin is priced outrageously, there’s actually a few other things that I think the world should know about insulin.
Not all insulin is created equal. Just like diabetes, insulin exists in various forms. Besides liquid insulin, there’s also inhaled insulin (Afrezza). And some people with diabetes may even take oral medications that are designed to help increase the effectiveness of insulin that they either receive via injection or produce on their own. There’s brand-name insulin produced by several drug manufacturers (the big three being Eli Lilly, Novo Nordisk, and Sanofi) as well as generic versions of the drug…but that doesn’t mean that generic insulin works just the same as brand-name insulin for all people with diabetes. Insulin is complicated and different types work better for different people.
Insulin is incredibly sensitive. Take one look at the vial in the above photo and tell me that the insulin inside it is safe at all times. Nope, it sure isn’t! Besides the packaging being super fragile, people who rely on insulin must also be careful to keep it at the proper temperature at all times. All it takes is dropping the vial once or leaving it in an unstable environment for the insulin to be rendered useless, potentially wasting a few hundred dollars. It’s as volatile as it sounds.’
Taking too much or too little insulin is dangerous and life-threatening. For some people, there can literally be a life-or-death difference between one unit of insulin. Too much can cause blood sugar to plummet and a person can experience severe hypoglycemia that may result in shock. Too little insulin has the opposite effect: A person will experience hyperglycemia that can have ranging consequences, some that are minimal/temporary, others that are very serious. That’s why precision is so important when dosing for insulin; on top of that, nobody wants to waste a single drop of the stuff because it is so expensive. But this is what many people with diabetes need in order to survive.
So when you see the hashtag #Insulin4All or hear someone talking about how overpriced it is, you’ll know some of the basic characteristics about insulin that make it invaluable to people with diabetes. Perhaps you’ll be inspired to join the fight to make insulin affordable and available to all – as it should’ve been to begin with.
This post was originally published on the T1International website on June 29, 2020, and was written by Cyrine Farhat. She discusses her participation in the WHA virtual forum on Access to Insulin and how she used it as an opportunity to voice her concerns about barriers to insulin access in her country (Lebanon) and around the world.
An Insulin Resolution is Necessary for Lebanon and the World
Diabetes has been on the global agenda in some form ever since World Diabetes Day was created in 1991,which is also the year I was born. It took 15 years to put diabetes on the United Nations agenda after that, to tackle the urgent need to pursue multilateral efforts to promote and improve human health, and provide access to treatment and health-care education. Fast forward another nine years to 2015 when the 2030 agenda was launched and the Sustainable Development Goals (SDGs) were adopted. Despite all of that, we are now in 2020, talking about access to insulin when we should have already made it widely available and affordable to all pillars of society.
Sadly, my country and many others are still facing many challenges with insulin access and affordability. Lebanon’s recent financial crisis has caused a dollar shortage that, since September, has restricted the ability of medical supply importers to import vital medical supplies. First it started with masks, gloves, and other protective gear, as well as ventilators and spare parts, and now even essential diabetes supplies are sometimes unavailable. The government has also not reimbursed public and private hospitals for bills, which has made it harder for diabetics to purchase their medication and other diabetes-related medical supplies. For example, Novorapid insulin has been hard to find at pharmacies over the past two weeks.
I had the honour to participate in the WHA virtual forum on Access to Insulin and to address all my concerns as a patient advocate from Lebanon. The aim of the virtual forum was to facilitate a wide discussion between a group of experts and advocates on this issue. The crucial problem is that almost a 100 years after the breakthrough that has saved millions of lives worldwide – the discovery of insulin – many people still cannot access or afford it.
The fact that I was able to voice my concerns as a person with type 1 diabetes among the panellists that the forum included was very empowering. The panel included Zachariah Muriuki, Project Manager – National Diabetes Prevention and Control Program at Ministry of Health, Kenya; Dr. Kaushik Ramaiya, Consultant Physician and Chief Executive Officer at Shree Hindu Mandal Hospital, Dar es Salaam, Tanzania; Greg Perry, Assistant Director General, IFMPA; and Emer Cooke Director, Regulation of Medicines and other Health Technologies, World Health Organization.
The forum started by showing a video that displayed testimonials from people living with type 1 diabetes around the world, including the barriers they face in regards to access to insulin, and responses from health care providers. Although I’ve personally lived with diabetes for almost 13 years and have dealt with so many obstacles, it still breaks my heart when I see what people with diabetes worldwide have to go through in order to get insulin and remain alive.
When asked during the forum about the barriers that the Lebanese have been facing with access to insulin and how the government needs to address these concerns, I depicted the current economic situation in Lebanon. The government is absent, especially after the revolution that spiked in October 2019 and left behind a collapsing economy. With hyper-inflation skyrocketing at 240% and the Lebanese Lira collapsing, the government has decided to remove the subsidy from bread and combustibles. The Central Bank has set their own policies restricting depositors’ access to funds in their current dollar accounts and the transfer of money abroad, making it harder to finance imports, including of medical equipment and medicine. These issues can put people living with diabetes in a very dangerous position. With no substitute to imported insulin, and the decline in purchasing power due to inflation, how will Lebanese people be able to afford their medication?
I shared that I believe in the upcoming months we will be left with an insulin crisis once the subsidy is also removed from medication. Patient advocates in Lebanon have been trying to reach out to the government, to no avail. The only thing we can do is to continue to raise our voice until we are heard.
In another question, I was asked what it meant to have the World Health Organization (WHO) and their Member States recognize and prioritize access to insulin, and how people living with diabetes and the global community can take this issue forward. I said that once the international community admits and perceives “insulin as a human right”, the entire scope of advocacy for access to insulin would have solid foundations and would shift from voicing about lack of access to actually forcing governments to comply. As advocates, we must seek accountability from governments regarding progress on WHA targets and address hurdles and bottlenecks in the process. Governments should also set state-level targets, and develop a strong participatory monitoring framework and management information system to measure outcomes of targets under SDGs and WHA.
The panel discussed other matters such as steps that have been carried out in Kenya to enhance access to insulin, how Tanzania has also worked towards improving access and the recommendations it provides to other countries, and how the WHO is committed to improving equitable access to insulin. It was concluded that the WHA resolution on insulin needs to be comprehensive in the requests to governments and to the WHO on actions they should take. Here, civil society, governments, and WHO need to define key requests and alight goals that serve making insulin accessible.
As a Global Advocate for T1International, I will continue to push for change in any way possible. Insulin is life support and no person should have to decide between putting food on the table or affording insulin. I truly believe that we are capable of creating change. The right of access to insulin is mine, yours, and the world’s. If it is our right, then we will not stop until we get it!