T1International Releases Important Statement on #insulin4all

This was originally published on the T1International blog on August 21, 2020. I am sharing it here today because it is incredibly important to me that you, readers of this blog, and the entire diabetes online community collectively understand how serious this matter is to me. I firmly believe that there is no place for bullying, hate speech, or disrespect in any type of interaction, regardless of when or where it takes place. It truly sickens me to think that anyone has tainted this hashtag with ugly personal attacks and I implore anyone using this hashtag to use it with the utmost respect and kindness – anyone who chooses not to do so diminishes the message behind this movement and harms the diabetes community as a whole. As for myself, I can promise you that as both the creator/writer behind Hugging the Cactus and as a T1International digital advocate, you can always expect me to interact with others in an open-minded, respectful, compassionate manner, no matter what.

T1International Statement on #insulin4all

T1International has been made aware of a recent increase in hateful speech, as well as disrespectful and non-collaborative behavior on the #insulin4all hashtag. While hashtags cannot be owned by anyone, T1International’s global work is tied to #insulin4all. As one of the creators of the hashtag, we want to acknowledge our concerns over these issues and set clear lines about what we stand for as an organization, and what we do not. We do not stand for or tolerate bullying, hate speech, abusive language, or words or actions that are intended to demoralize others.

The History of #insulin4all
The #insulin4all campaign was launched in the lead up to World Diabetes Day in 2014 by T1International and other organizations. Although World Diabetes Day began in 1991 in order to “draw attention to issues of paramount importance to the diabetes world”, the organizations felt that the true spirit of the day had been lost. The campaign was an effort to emphasize that people living with diabetes struggle to survive or face extreme difficulties because they cannot afford or access their life-saving insulin, blood glucose test strips, or basic healthcare. Others are caught in conflict or living in countries where there is little humanitarian assistance for people with diabetes. Many suffer complications and premature death without affordable or sustainable access.

The #insulin4all hashtag caught on quickly, and, in many ways it took on a life of its own. Advocates across the globe use the hashtag on various online platforms and in-person as a rallying cry to support their efforts to improve the lives of people with diabetes.

T1International’s #insulin4all Chapters
T1International’s USA Chapters and some of our Global Chapters have #insulin4all in their names, which reflects the grassroots nature of the movement and the volunteer efforts, though the Chapters are supported by the T1International Team. All Chapter Leaders and Leads sign an agreement to abide by our policies and values. Through this agreement, they are specifically required to act in a way that is respectful and that represents T1International in a professional manner, honouring T1International’s values and upholding the charity’s reputation. Chapter Leaders and Leads are also provided with guidance and tools for engaging in-person and digitally in ways that reflect the respectful, inclusive, and intersectional movement that we are collectively building.

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What #insulin4all Means to T1International
T1International sees #insulin4all as a community-led effort that is not solely focused on one person, entity, or country, but is a collaborative effort to bring equality to all people living with diabetes. This involves not only a fight for equality through affordable access to insulin, supplies and healthcare, but equity and inclusion when it comes to people with all types of diabetes, from all socioeconomic backgrounds, races and ethnicities, gender identities, countries of origin, and more. There is a lot of work to be done, and we believe in doing that work together wherever possible. We believe in doing it respectfully, transparently, and in a way that upholds our values.

The #insulin4all movement has built significant power, and there is a great need to use that power responsibly to advance the cause. When that collective power is focused on those responsible for the problem that have the power to fix it – that means Eli Lilly, Novo Nordisk, and Sanofi, along with other actors that want to profit on insulin even if it means people die because of its price – it is unifying for the community, and serves as a force for driving change.

When that power is focused on people who aren’t in a position to make change themselves as individuals – and especially when that focus intersects with other sources of power like white privilege, economic privilege, hetero/cis privilege, and other types of privilege – it ends up being a source of division and moves us further from our end goal of affordable insulin. Holding the Big Three and their executives accountable is categorically different from attacking individuals who aren’t in positions of power.

What #insulin4all Does Not Mean to T1International
As a small team of staff that are deeply committed to the values outlined, it pains us to see the hashtag and, thus, the affiliation with T1International’s name being used in harmful ways. It is worth reiterating: we do not stand for or tolerate bullying, hate speech, abusive language, or words or actions that are intended to demoralize others. Using the #insulin4all hashtag to attack people of color, members of the LGBTQ+ community, any marginalized group – or any person or group for that matter – is actively harmful to the movement. We do not believe in meeting problematic behavior with problematic behavior. We believe in calling out unhealthy or damaging behaviors – like the pharmaceutical industry’s price-gouging – in ways that are bold and that ignite change to improve the lives of patients, but are not vicious.

We hope that the #insulin4all community, and whatever it means to each member of that community, can come together over the shared aim of improving the lives of people with diabetes, starting with making insulin affordable and accessible to everyone who needs it. As the fight continues, we ask that our volunteers and supporters approach these issues with the same outstanding passion and commitment we see every day, while being open-minded and respectful in their approach.

Fighting for LGBTQ+ Justice and #insulin4all

This post was written by Quinn Leighton and it was originally published on the T1International blog on July 8, 2020. June may have been Pride Month, but it’s important every day to understand the challenges faced by the queer and trans communities on a daily basis and raise awareness. Thank you to Quinn for sharing your story, fighting for LGBTQ+ justice, and supporting efforts to make insulin available and affordable for all.

I remember stepping up to the counter to check into an appointment with a new medical provider, when the woman at the desk asked me to step to the person to her right saying to her colleague, “Can you help this…” I had to finish the sentence for her, “person. I’m a person.”

I have often felt fear and uncertainty as a person living with Type 1 Diabetes: when I wake up in the middle of the night confused, reaching for my glucose tablets because my blood sugar reads between 40-50; when my spouse is driving me to the ER because I can’t stop throwing up or get my ketones down while I’m home sick with the flu; and of course the overwhelming financial burden we face daily and monthly in order to stay alive and as healthy as possible.

All of this is assuming we don’t face additional barriers such as discrimination, bias or mistreatment the moment we walk through the front door of a pharmacy, or a provider’s office simply based on who we are and how we show up in the world. For people in the LGBTQ+ community, such as myself, this fear is real and based on lived experience. I am queer, non-binary and married. I’m also white, and acutely aware that while my experiences have filled me with anxiety and have led at times to delaying medical care, I recognize I have not experienced medical racism in the way an LGBTQ+ person of color likely has.

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“We must recognize LGBTQ+ people often do not receive the same level of treatment or care that non-LGBTQ+ do, and LGBTQ+ people of color – particularly transgender women of color – are at the highest risk of discrimination, mistreatment and fatal violence.”

Delaying care due to these fears as a queer or trans person is not uncommon in any medical setting, however if you delay care living with diabetes, it can lead to life-threatening complications or even worse. It’s imperative that LGBTQ+ people living with diabetes and other chronic illnesses have the security, affirmation and resources to access the care they need.

We also know that LGBTQ+ people, particularly transgender and non-binary people make less money, despite having the same, if not higher levels of education as their cisgender, heterosexual peers. Even with a patchwork system of employment protections across communities, states and now federally; discrimination in the workplace is still very real. Among LGBTQ+ people, cis-bisexual women and transgender people have particularly high rates of poverty at 29.4%.

Together we can work toward greater health equity, but collectively, we must recognize the disproportionately high impact of poverty, violence, prejudice, mental health issues, discrimination and fear that so many LGBTQ+ people face living with diabetes. We must recognize LGBTQ+ people often do not receive the same level of treatment or care that non-LGBTQ+ do, and LGBTQ+ people of color – particularly transgender women of color – are at the highest risk of discrimination, mistreatment and fatal violence.

Understanding these inequities is paramount in moving forward in advocacy for affordable and accessible insulin for everyone who needs it, particularly those most vulnerable to bias, mistreatment and discrimination. This includes healthcare policies protecting people with pre-existing conditions and protecting LGBTQ+ people from discrimination when accessing healthcare. Efforts to repeal or rollback protections put into place through plans such as the Affordable Care Act that seek to provide care to people who need it most, particularly during a pandemic, is simply cruel and will only result in more harm and negative health outcomes. Non-discrimination protections are critical in providing the care needed for so many LGBTQ+ people living with a pre-existing condition such as diabetes, who already face a gamut of uphill battles in other areas of daily life.

Queer and trans communities are formidable. They overcome extraordinary obstacles to gain economic self-sufficiency, put a roof over their heads, maintain their health in the best of conditions, and simply exist and live in this world. What I’ve really noticed most is the courage and resiliency to navigate these barriers while celebrating community and showing up as our true and whole selves.

I recognize structural and systemic change won’t happen easily or quickly; however, I am hopeful that the movements around us will support communities of color, particularly black and indigenous people fighting for their lives and Asian people under attack due to prejudice and misinformation surrounding the COVID-19 pandemic. I am hopeful people will elevate their support of LGBTQ+ people and those most vulnerable within our community while working to make insulin affordable so that no other person living with diabetes is forced to make life-threatening decisions. And it is my hope that this momentum of support will carry us forward toward justice.

An Insulin Resolution is Necessary

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.

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Patients like Cyrine have the power to change the world.

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!

“My Black Diabetic Life Matters” – A Post by Sydnee Griffin

This post was originally published on the T1International website on June 15, 2020, and is written by Sydnee Griffin. I reached out to Sydnee and asked if I could re-post it here because Sydnee’s words opened my eyes to the medical side of racism and the importance of supporting my Black friends (and all Black voices) with and without diabetes. Thank you for sharing your story, Sydnee. 

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“Follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them.”

My diagnosis story is so similar to numerous other type 1’s, I almost never tell it. I had the weight loss, the extreme thirst, the irritability, and the constant hunger. Paired with abdomen pain that was similar to that of menstrual cramps, all of these things signaled ‘puberty’ to my 16 year old brain. I had been living with the discomfort for so long, it was no longer new to me.

I remember a handful of things about being admitted to the hospital and the time I spent there. The first is the hospital staff telling me if I had gone home and waited for the test results to come on Monday, I probably wouldn’t have made it through the weekend. The second is the amount my family needed to advocate for my care during my stay. From the office of my primary care physician to the hospital itself, my mother had to speak up in order for me to get the treatment I needed and in a timely manner. Though the initial night of the hospital is fuzzy, I remember my mother going back and forth with the ER technicians imploring that I needed to be put on an IV ASAP. She noted that I had lost significant color and all of the questioning could be done while I was hooked up. The back and forth seemed to go on for hours. When I left the hospital I remember wondering, “Why did my mom have to beg those people to do their job when I was visibly sick?” A few years later after I had dealt with numerous visits, checkups, and insurance calls, I became aware of the medical side of racism.

A quick Google search will take you to a few sites that define the term medical racism (i.e. racism and prejudice that carries over into the medical field) and even more articles about the instances occurring. What do Beyoncé, Serena Williams, and I all have in common? We all have experienced medical racism that could have easily cost us our lives – and so have numerous other Black people. It’s one of the things I don’t share with my white friends that I’ve made online who have type 1 diabetes.

Another occurrence I see fairly often with my non-white friends with diabetes is questioning over their diagnosis. My friends who look like me are familiar with the question, “You’re type one? Are you sure?” This is a question that my white friends are rarely ever asked. This is because type 2 diabetes is more prevalent in communities of color, but also because type 1 diabetes organizations and type 1 diabetes social media accounts often promote the image of the skinny white kid as the face of type 1 diabetes.

I recently made an Instagram account to help connect with others living with type 1 diabetes and to become a face of the community. Before I got involved, the biggest thing I noticed was the lack of Black representation on diabetes Instagram. There are a handful of them that I follow, and it’s great that they’re there – but I had to scour Instagram for them. So even, as they exist, they’re not getting nearly the same amount of attention or recognition as their white counterparts. And it’s easy to say, maybe their content isn’t as engaging (you’d be wrong, but let’s entertain the idea!) – you mean to tell me not a one of them is as popular as your local white type 1 blogger? I can search through the hashtag #t1dlookslikeme and not find a single Black person under the “popular” posts.

These are the things that contribute to both misdiagnoses in the doctor’s office and stigma outside of the doctor’s office. These are the things that need to change and the things that we can change that don’t involve getting a degree in medicine.

How can we change them? For starters, follow and highlight local Black and non-Black POC on social media. Listen to their stories, speak out and support them. Right now, I’m seeing a ton of white people with diabetes online who are complaining about people wanting them to speak up on the protests and police brutality occurring now. Some see their account as something that’s only for diabetes content. Hearing that is really disappointing, as I’ve pointed out to quite a few of them. Because I’m Black and diabetic every day.

I have to worry about police brutality in addition to blood sugars and health outcomes. So when they tell me they don’t think the two are related, or “diabetes content” it really shows me where their head is at. It is a privilege to solely be marginalized with your one disability. I have had to grapple with myself as a Black person about whether or not I am doing enough with signing petitions and donating, because I can’t be out protesting due to living with diabetes and COVID-19 still being prevalent. It is a privilege to not have to worry about diabetes and COVID-19 and a privilege to not have to worry about being racially discriminated against in a healthcare setting or any other setting.

To my Black diabetic friends – I am here online if you need an ear, or support, or help in any way. Please don’t feel like you’re alone. We are here, we are strong, and we aren’t going anywhere. For anyone looking to get educated right now, myself and lots of other Black social media users are posting helpful resources on how to donate and support even if you’re immunocompromised.

Don’t think that you as a white person or non-Black POC need to necessarily make a statement. There are tons of Black voices you should and can amplify in this time. We are similar in so many ways when it comes to this disease, but we are also different in so many as well. You have Black friends. You have friends with diabetes. Both see you when you don’t support them. They notice as you advocate for affordable insulin to save their lives, but don’t declare that their Black life matters. You need to know their lives are in danger in more ways than one. Support them through this like you would support them with any other diabetes related struggle.

Have You Signed the Type 1 Diabetes Access Charter?

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.

8 Things About Diabetes That Make Me Want to Rip My Hair Out

Life with diabetes can be the opposite of a cakewalk. In fact, it can be so frustrating at times that I seriously consider ripping my hair out due to sheer agitation.

When thinking about the things that drive me nuts about diabetes, I came up with a list of 8 occasions in which I come this CLOSE to losing my freakin’ marbles:

1. When low blood sugars refuse to come up…

2. …And when high blood sugars refuse to come back down.

I’m considering these first two as separate list items because the scariness of a lingering low and the frustrating nature of a stubborn high can be two very different types of “GAAAAAAAAHHHH!” But both can be especially suck-y when you feel and know that you’ve been doing everything right to treat them without experiencing the expected results.

3. Pod and CGM sensor failures.

Oooh, any sort of device failure can be so exasperating any time of day. But they’re worse when they happen at inconvenient times, such as in the middle of the night or during an important conference call. All diabetes technology should work flawlessly at all times, but that’s not always the reality that we live in.

4. Inaccurate results.

I can’t stand when my blood sugar meter or my CGM report false readings. Sometimes, I’ll check my blood sugar two times in a row just to see how close both readings are to one another, and it makes me want to throw my meter across the room when I see that they’re off by 20+ points. Once, I had a reading that was off by more than 50 points! That makes a major difference in how much insulin I give myself in that moment in time, so inaccurate results can really derail my blood sugars for hours after.

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I’m sure you can imagine how entertaining the search results were when I looked up images to go with this blog post.

5. Folds in the adhesive.

Whenever I apply a fresh sensor or a pod, I try to be super careful and make sure that the adhesive sticks smoothly…but despite my best efforts, that doesn’t always happen. Folds in the adhesive are far from the worst thing in the world, but they do make it more difficult for my devices to stick on for the full length of time that I need to wear them, and I usually end up having to add tape around them to reinforce the hold. More tape = more folds = more irritation!!!

6. Unexplained blood sugars.

Anyone with diabetes has been there, done that. You could follow the exact same routine from one day to the next, even eating the same foods at the same times, and get totally different blood sugar results. Or maybe you thought that you bolused perfectly for a meal, only to find out hours later that you’re much higher or lower than you anticipated. Whatever the reason behind them may be, unexplained blood sugars are just obnoxious.

7. Screeching alarms.

Speaking of things that are obnoxious, let’s talk about wailing OmniPod or Dexcom alarms for a hot second. There’s nothing like a resounding BEEEEEEEEEEEEEEEEEEEP to ruin your day!

8. The INSANE costs of our supplies.

Undoubtedly, the thing that most makes me want to rip my hair out when it comes to diabetes is the cost of supplies. I’ve blogged more and more recently about the criminal cost of insulin – since the 1990s, the cost of insulin has increased over 1,200% (!!!) – and I’ll continue to do so until EVERYONE with diabetes can afford this life-saving medication. We never asked for diabetes to happen to us. But it did. And the fact that many people with diabetes have to make sacrifices in order to, well, survive, is simply not okay, and the most infuriating thing about living with this chronic illness.

Do You Know How Shareholders Benefit from Insulin Price Increases?

This post was originally published on the T1International website on May 6, 2020, and was written by Rosie Collington. I am sharing it on Hugging the Cactus because to be quite frank, I never understood the many issues surrounding insulin price increases. After reading this post, I had an “aha!” moment as I finally began to understand how the profits from insulin price increases are distributed. It’s an important issue to understand: with increased awareness comes an increased drive to make change.

Patients living with type 1 diabetes have known for years that the list price of insulin in the United States has soared. They’ve paid the price – in insurance premiums, in upfront costs, and also, tragically, in some cases with their health.

But until recently, it has been difficult to prove just how much the list price of insulin has increased, and what proportion of the higher costs for patients have gone to the three main insulin manufacturers – Eli Lilly, Novo Nordisk, and Sanofi – versus other companies in the US prescription drugs supply chain, like insurance companies, pharmacies, and pharmacy benefits managers. Information about pricing negotiations is considered a trade secret, meaning that the actual data is difficult to access. Instead, researchers and patient groups have had to more or less rely on guesswork to estimate the value of price increases, or the highly selective data published by the companies themselves, which do not paint the full picture.

The lobby group representing pharmaceutical companies in the United States, PhRMA, has suggested that pharmacy benefits managers (PBMs) have been the primary beneficiaries of the sharp list price increases of many prescription medicines in recent years. The American Diabetes Association’s Insulin Access and Affordability Working Group similarly reproduced selective data released by the three insulin manufacturers on the differences between the list and net prices – the amount the manufacturer receives – of a few insulin medicines, suggesting that the additional profits accrued by the manufacturers was low relative to intermediaries like PBMs.

 

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But in March of this year, researchers at the University of Pittsburgh provided evidence that the net price of insulin medicines in the United States had also soared – by 51% between 2008-2017. This indicates that while other intermediaries had benefited from list price increases, the manufacturers had too. This may seem obvious, but having data to prove it is important.

For my research with Bill Lazonick, funded by the Institute for New Economic Thinking, it has been key to mapping how the profits from higher insulin sales revenues have been distributed. We wanted to find out whether insulin list price increases in the United States had contributed to higher research and development (R&D) investment by the companies, as they so often claim is the case. What we discovered was that as the list price of insulin has increased in the past decade, the ratio of spending on R&D relative to what the companies distributed to shareholders had actually decreased. While over the period of 10 years, the companies spent $131 billion directly on R&D, crucially we found that during the same period, the companies had distributed $122 billion to shareholders in the form of cash dividends and share buybacks.

Cash dividends are the means used by all publicly listed companies to distribute money to shareholders as a reward for holding shares. Share buybacks work quite differently – companies can buy their own shares from the market, which inflates the value of existing shares on the market. Share repurchasing can also benefit company ‘insiders’, like executives, who often receive pay in shares, because they can decide to time when they sell their shares to get the most value. This is not technically illegal, though it was once upon a time. In the last year, some lawmakers in the United States, including Bernie Sanders and Elizabeth Warren, have called for stock buybacks to be banned.

Fundamentally, the system should not have permitted shareholders to profit in this way as diabetes patients were struggling to access their life-saving prescription medicine. As coronavirus continues to spread around the world, the pharmaceutical industry is facing more scrutiny than ever before of its financing and drug development processes. By understanding how value is extracted by shareholders in the pharmaceutical industry, and what relationship this has to patient access, we can, hopefully, create a better system.

10 Countries, 10 Global COVID-19 Perspectives

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.

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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.

Why I Decided to Become a Digital Advocate for T1International

When I started Hugging the Cactus, I knew I wanted to do more with it than just use it as a platform to share my diabetes story.

I also wanted to make change.

I wanted to do more for my diabetes community.

I wanted to become the best advocate that I could possibly be.

But for a long time, I was stuck on how exactly to go about doing that.

During this time in quarantine, I’ve been able to spend more time thinking and researching ways that I could get more involved.

And that’s what lead me to T1International.

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#insulin4all means FOR ALL.

As I mentioned in a blog post earlier this month, I’ve sort of known about T1International for a long time now. I knew that they were the organization behind the well-known hashtag #insulin4all, but I was curious to learn more about them and their mission.

As I discovered, T1International works to support local communities by giving them the tools they need to stand up for their rights so that access to insulin and diabetes supplies becomes a reality for all. They have a plethora of materials and information on their website that helps those who are interested become well-versed in this issues surrounding insulin and diabetes supply accessibility. In addition, the T1International team keeps site visitors up-to-date with their blog that contains articles on everything from global stories to legislation explanations.

It wasn’t long before I realized I wanted to work with T1International. So I reached out to their team and applied to become a digital advocate, and less than one week later, I completed my orientation. It’s official: I’m a proud T1International digital advocate.

This is meaningful to me because now I feel more empowered to advocate about the issues that matter, such as the #insulin4all movement. This movement is so important because access to insulin, no matter who you are, where you’re from, or what type of diabetes you have, is critical to the health of all individuals who rely on insulin to live.

Before I dive more into the insulin crisis, let me first acknowledge that I am extraordinarily lucky and privileged: Insulin affordability has never been a personal issue for me. Sure, I’ve had to pay way more out of pocket than I’d like to in order to cover the cost of insulin, but I’ve never had to make the impossible choice between paying for a month’s supply of insulin OR paying for monthly rent.

Many people have had to make that sort of choice, though. And that’s simply not okay.

Whether you’re familiar or unfamiliar with the current insulin crisis, consider the following facts (provided by T1International):

  • Since the 1990s, the cost of insulin has increased over 1,200%, yet the cost of production for a vial of analog insulin is between $3.69 and $6.16.
  • Spending by patients with type 1 diabetes on insulin nearly doubled from 2012 to 2016, increasing from $2900 to $5700.
  • A study of rising drug prices over the decade ending in 2018 found that list prices of insulins increased by 262%, with net prices increasing by 51%.
  • One of every four patients with type 1 diabetes has had to ration their insulin due to cost. Many have died.

These statistics are more than alarming. They’re downright disgraceful, unjust, and have forced patients to resort to drastic measures to stay alive.

Change needs to happen.

This is why I’m humbled, fired up, outraged, and beyond ready to join the T1International digital advocates team and become one more voice who helps to make the issues regarding insulin access and affordability heard.

3 Things I Want the World to Know About Insulin

See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?

Can you believe that, at approximately $9,400 per gallon, insulin is ranked as the sixth most expensive liquid in the world?

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.

Ethan Zohn_ A Survivor Contestant Who Inspires-2

  1. 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.
  2. 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.’
  3. 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.