Patient Voices Matter
It’s important that legislators speak directly with patients. If you haven’t heard from members of your constituency who have been affected by high insulin prices, get in touch with T1International. We can help connect you to patients in your state. You can also try reaching out to them via social media using the #insulin4all hashtag. This is an issue that affects patients and families in every constituency, and hearing from them will be a huge benefit to your policy-making.
Senators and Representatives have introduced bills at both the federal and state levels to address the drug cost crisis in the United States. States have yet to fully embrace their authority in reining in prescription drug prices, but state officials have considerable opportunity to reform drug pricing. There are a variety of legislative options that can help patients with type 1 diabetes for the long-term.
T1International Chapters across the USA are working with their legislators to take action and address insulin access issues.
Emergency prescription refill legislation allows a pharmacist to dispense an emergency supply of a chronic maintenance drug (e.g. insulin) to a patient without a current prescription in limited circumstances.
Kevin’s Law is named for Kevin Houdeshell, who passed away in 2014 from rationing his insulin after he was unable reach his doctor to refill his expired prescription due to the New Year’s holiday. Following his death, Kevin’s parents, Dan and Judy Houdeshell, began advocating in their home state of Ohio for a change to the law so that patients would be able to access their medications in the event that their prescription was expired and the patient and pharmacist were unable to reach the doctor. They were successful in Ohio, and fifteen other states have since passed similar legislation to ensure that patients have emergency access to the medication they need.
One such bill was Colorado’s HB1077, which, in addition to insulin, also included emergency refills for a variety of other chronic maintenance medications, such a inhalers, blood thinners, and medications for blood pressure, mental health, and HIV. Oregon's 2019 bill SB9 also includes an insurance mandate.
Download our fact sheet about Kevin's law here.
Many patients find themselves with exorbitant costs at the pharmacy. Whether it’s a drug that is not covered well by someone’s insurance company, or the patient has a high deductible plan, co-pay cap legislation can provide relief to some consumers by placing a monthly limit on what consumers pay in out-of-pocket drug costs. It is important to note that copay caps only lower the out-of-pocket cost of insulin. This distinction between price and cost is significant. Copay caps push the high costs of insulin onto insurance companies, state governments, and other consumers, which over time could lead to higher premiums.
Colorado passed HB19-1216 which caps the price of insulin at $100 for insured patients. While this bill has issues and does not help some of the most vulnerable, it is a foundation to be built upon. Utah's HB207 is one of the strongest pieces of copay cap legislation, as it includes a $30 copay cap and a bulk buying program for the uninsured. Connecticut's HB5175 and SB1 are more expansive in that they include a $50 insulin copay cap and a $100 copay cap on supplies.
During the 2019 legislative session, legislators in Minnesota introduced Senate File 3963, also known as the Alec Smith Emergency Insulin Act. The bill was named for Alec Raeshawn Smith, a Minnesota resident who passed away in 2017 after rationing his insulin because he could not afford to refill his prescription. The bill would benefit low-income individuals without insurance, without prescription drug coverage, or with insurance that has an out-of-pocket limit of more than $5000.
Many of the deaths within the diabetes community that have occurred due to rationing insulin were those of patients with type 1 diabetes who were uninsured. Making sure uninsured patients have access to affordable insulin would help to prevent more such deaths from occurring. While this proposal does not lower the price of insulin, it helps ensure that pharmaceutical corporations start to bear at least some responsibility for their price-gouging.
The lack of transparency in prescription drug pricing prevents the public from gaining a true understanding of the cost of prescription drugs purchased. Greater transparency in the current opaque pricing and payment environment for prescription drugs would allow the public to have a clearer idea of how drugs are priced and savings are applied. The more information we have, the more patients and policymakers can push for the best strategies to address rising drug prices.
In 2017, Nevada passed Senate Bill 539, which requires insulin manufacturers to report costs and profits and to notify the state before planned price increases. Unfortunately, after legal threats from the pharmaceutical industry, the law was modified to keep more information secret.
Developing an independent body to evaluate and set limits on the prices of medicines would be a groundbreaking victory for patients. The government imposes almost no constraints on what a manufacturer can charge for a medicine in the U.S. The rationale for affordability boards is clear: insulin is like water. Its price should be regulated in the same way.
In Maryland, House Bill 768 was passed by both chambers during the 2019 legislative session, creating the Patient Drug Affordability Board. In the future, the state board may be able to set limits for drugs purchased by state, county, or local governments with the approval of the Legislative Policy Committee of the Maryland General Assembly. The Maryland legislation is a helpful starting point, which could be strengthened by including insulin and all costly drugs that are challenging for patients to afford.
Up until the 1990s, Massachusetts and Michigan both produced vaccines for their residents, so states could produce and provide their own affordable insulin. Researchers estimate that the cost of producing analog insulin is merely $6, which means that a not-for-profit, government insulin manufacturer could easily produce insulin at an affordable price. States could consider asking the federal government to use its patent licensing authority and/or explore how their state sovereignty may make them immune from patent infringement claims.
Congress Affordable Drug Manufacturing Act was introduced in Congress in 2018. It would create a federal manufacturer to produce generic medicines, including types of insulin no longer protected by patents. While it is a federal proposal, it can serve as a model for states.
The Role of Pharmacy Benefit Managers (PBMs)
We recognize that PBMs and rebates are an important part of the drug pricing issue, and that they share part of the blame when it comes to affordable prescription drug prices. However, we feel strongly that the focus should remain on the root cause of the crisis, which is list prices set by the manufacturers. If we spend too much time and focus on PBMs, patients still suffer and the 90% of the problem - pharmaceutical companies - remains unchecked.