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. From emergency refill legislation to transparency laws and price capping measures, there are a variety of legislative options that may help patients with type 1 diabetes.
T1International Chapters across the USA are working with their legislators to take action and introduce the types of bills outlined below to 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.
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, the patient has a high deductible plan, or the patient doesn’t have insurance at all, price capping legislation provides relief to consumers by placing a monthly limit on what consumers pay in out-of-pocket drug costs.
In Maryland, House Bill 768, passed by both chambers during the 2019 legislative session, creates a state board, called the Patient Drug Affordability Board, that could cap prices on prescription drugs.
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, which is now a part of Minnesota’s health omnibus bill, requires the Minnesota Commissioner of Human Services to make insulin available to uninsured individuals through volume purchase.
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.
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. This law is a good example of the legislation we would like to see across the United States.
We request that all legislators support efforts to allow Medicare and Medicaid to negotiate pharmaceutical prices. Medicaid is financed by our tax dollars and states have an obligation to spend that money responsibly. High prices also affect our state budgets, forcing legislators to make hard choices between spending on things like education and other health priorities. The purchasing power of both Medicare and Medicaid will pressure insulin manufacturers to decrease prices.
During the 2019 Legislative session, legislators in Massachusetts introduced companion bills House Bill 1133 and Senate Bill 706. The bills are comprehensive reform packages that set price caps, demand transparency, and authorize UMass (Massachusetts’ combined Medicaid and CHIP program) to negotiate drug prices. These bills provide a model for the rest of the country to follow
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.