Diabetes Blog Week continues with the topic for Tuesday being The Cost of a Chronic Illness:
Insulin and other diabetes medications and supplies can be costly. Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage. So today, let’s discuss how cost impacts our diabetes care. Do you have advice to share? For those outside the US, is cost a concern? Are there other factors such as accessibility or education that cause barriers to your diabetes care?
Soon after I was diagnosed with type 1 diabetes, I came across an article in my studies in international economics entitled Insulin for the world’s poorest countries. Written in 2000, the abstract reads:
In the industrialised world, type 1 diabetes rarely results in death from ketoacidosis. The same is not true in many countries in the developing world where insulin availability is intermittent, and insulin may not even be included on national formularies of essential drugs. The life expectancy for a newly diagnosed patient with type 1 diabetes in some parts of Africa may be as short as 1 year. The World Bank has identified 40 highly indebted poor countries (HIPCs) whose national debt substantially exceeds any possibility of repayment without heavy impact on health and social programmes. Incidence and prognosis of type 1 diabetes in HIPCs are lower than in most industrialised countries, and 0.48% of the world’s current use of insulin is estimated to be sufficient to treat all type 1 diabetic patients in these countries. A proposal is made for the major insulin manufacturers to donate insulin, at an estimated cost of US$3-5 million per year, as part of a distribution and education initiative for type 1 diabetic patients in the HIPCs. No type 1 diabetic patient in the world’s poorest countries need then die because they, or their government, cannot afford insulin.
This article has remained with me ever since and influenced every endeavor I have pursued – including this very blog. In fact, it has been on my mind quite a lot recently as we face an insulin crisis in the United States, where insulin is increasingly too expensive to many Americans. The news has covered and continues to cover this crisis, one that is currently overshadowed by American politics. The dire nature and the man-made reasons for this crisis at the hands of pharmaceutical manufacturers* have been laid out in The Washington Post last year, and more recently by Foreign Affairs, NBC, Vox.com, Business Insider, The Lancet, and countless blog posts and on social media.
What you ultimately need to know is that pharmaceutical companies have decided to price gouge patients in the United States where there are virtually no restrictions or regulations on how much they can charge. The patent for insulin was originally given away by Banting and Best for $1, and while newer insulins have come to market since then, the companies who received the gift from these inventors have decided to use it to profit off peoples’ lives. In the United States, patients are paying hundreds and thousands every month to purchase the insulin they need to survive. Some are turning to GoFundMe accounts to raise the money needed, many have turned up in emergency rooms in diabetic ketoacidosis because they are skipping shots, some have died from lack of access to insulin. It is estimated that it costs approximately $1.48 to manufacture a vial of Humalog and yet the current US price is $275.50 – a 99.46% profit margin per vial of insulin.
You also need to know that little is being done to address these unconscionable prices. The excuses given by industry do not add up and politicians are mostly focused on other matters. There is a bill in Nevada pushing for reforms. Some Senators are starting to speak out. Lawsuits have been filed (follow T1 Defense Foundation for updates). But the price increases continue.
Anyone who has followed my blog knows that I have spoken out against pharmaceutical companies time and again (see list below). But this is beyond the pale and one that needs to stop. All people have a right to health and that right is currently being denied. It breaks my heart that 17 years after an article on insulin for the world’s poorest countries was published, access to insulin still remains a challenge around the world and now in America too.**
There are many other tangible and intangible costs to living with chronic illness (and even more so with multiple chronic illnesses as I and many others face). Right now though the focus must be on the actual US dollar amount of a vial of insulin – the price tag on our lives.
For updates on the insulin crisis in America and insulin access issues around the world, follow #insulin4all on Twitter.
Also make sure to sign the Type 1 Diabetes Access Charter and download the T1 International Advocacy Toolkit.
Update on 5/20/17:
- CBS published a story on the crisis on Thursday, May 18, 2017
- The bill in Nevada passed their Senate on Friday, May 19, 2017
Previous blog posts on access issues, pharmaceutical companies, and related matters:
- The Costs to Live (4 part series)
- Response to a Forbes Blogger (on pay-for-delay deals)
- Who Owns the Right to University Research
- Dissenting Once More – Why the Supreme Court Ruling in Sorrell v. IMS is Also Wrong (on selling your pharmacy data)
- Affordable Health Care in America
- Sharing Clinical Data
- Dear AstraZeneca – AZ&Me Prescription Savings Program
- $875 (on what it’s like to live on $875/month with no insurance)
- I Am Them (also on what it’s like to be poor and the access issues faced)
- A Brief Tantrum (on the frustration of managing multiple medical issues)
- T1International and Rights of People with Type 1 Diabetes (on health as a human right when it comes to diabetes)
*Note: Pharmacy benefit managers (PBMs) and insurance companies have a role in these prices as well, but the pharmaceutical companies are the largest culprits in this story and dodge accountability at every turn. Pharmaceutical companies would like you to believe that the real fault lies with the PBMs and insurance companies rather than admit their responsibility in profiteering of peoples’ lives.
**Note: Many access issues have always existed, primarily for the poor in America – those who do not have insurance or even some who do but cannot afford the deductibles. The access issue is ever more prominent as it strikes the middle class and more diabetics.