Progress for Patients Builds Hope, not Barriers

The passage of the Inflation Reduction Act was the single biggest blow to anyone who faces an illness since their own diagnosis. No public policy or policymaker has ever crafted a law that purposely reduced the chance of discovering a treatment or cure in American history. That is the opposite of human progress.

This was not by accident or as an “unintended consequence” mind you. All the lawmakers who voted to make this happen knew full well of its projected and likely outcomes. The Congressional Budget Office (CBO) analyzed the legislation prior to its passage and concluded that it would result in the production of fewer options for patients.

Since it was signed into law, that prediction has been proven correct…even before anyone has seen a single benefit of the law.

As a patient who relies on a pipeline of treatment, this law that will ultimately choke discovery is a direct threat to me and my family. But since everyone knows a person battling disease, and will themselves be a patient, this threat isn’t just personal to me, but affects everyone.

While no one is safe as long as this law is on the books, Congress is taking steps to mitigate some of the damage. Two new legislative initiatives, the Ensuring Pathways to Innovative Cures (EPIC) Act and the QALY Ban Bill, have been introduced in Congress, and are important steps in the right direction.

Unlike the IRA, which was supported by members of only one party, these bills have sponsors from both sides of the aisle. The recently proposed bipartisan EPIC Act aims to undo some of the most egregious parts of the IRA’s drug pricing policies. It does so by leveling the playing field between different types of medications. When passed, the IRA put its thumb on the scale for one class of treatments over another in an effort to impose government price controls – a policy that has never achieved its intended result. In fact, it has only ever achieved one thing: shortages. 

Specifically, the EPIC Act provides a much-needed fix by equalizing the price negotiation period, which will stop the picking of winners and losers and stop the threat to an entire class of drugs used by millions of patients. Patients who use them to fight cruel diseases such as Alzheimer's and Parkinson's. While the EPIC Act isn’t going to erase all of the IRA’s most dangerous drug pricing provisions, it’ll address one of its most egregious.

The second bill undoes another kind of discriminatory policy, and is titled the Protecting Healthcare for All Patients Act (QALY Ban Bill). Introduced in February, this bill would ban the inhuman measures that some insurers and government agencies utilize. This outdated metric considers those who are disabled, sick, or elderly to have a “lower value” of life compared to healthy individuals who are judged to be more worthy. This measurement system determines that certain patients should not receive the same level of care because of, for example, their disability. To attempt to calculate the value of a human life using numbers is incredibly immoral, unjust, and, frankly, inhuman.  

I take issue if some bureaucrat thinks my life is worth less because I can’t walk. Ask the mothers of the developmentally disabled, or my children with a father in a wheelchair, if a formula can understand the value of any individual.

If passed, the QALY Ban Bill would be an important step towards halting these metrics and help protect the lives of our nation's most vulnerable patients who deserve a chance to live their best lives.

Although both policy proposals are positive leads, recent congressional stalling and showboating have highlighted how some lawmakers are not actually focused on fixing issues that impact patients. This was made egregiously clear during the Senate HELP Committee’s Drug Pricing Hearing held on February 8. Instead of discussing ways to improve our healthcare system and make drugs and treatments more accessible for all patients, Senator Bernie Sanders (I-VT) chose to venomously attack the manufacturers of medicine that supply cutting-edge treatments. They should be asking how we can prevent the United States from losing its leadership in medical treatments. Lawmakers need to fulfill their responsibilities to their constituents and protect the medical ecosystem that so many rely on.

We must urge Congress to pass the EPIC Act and QALY Ban Bill. With the State of the Union coming up, we hope President Biden will close this chapter and start a new one titled “Hope Matters Most.”