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In their quest to cut health-care costs, Colorado lawmakers must make sure not to silence the voices of patients and caregivers who are most affected by their decisions.

The state Senate Budget Appropriations Committee is currently considering proposed legislation to create a Colorado Prescription Drug Affordability Review Board and will hold a hearing on it soon. The board would implement price controls for medications, threatening their availability for patients.

The bill calls for the board to set an upper price limit on prescription drugs, outlawing those that cost more than this threshold. Such an arbitrary price cap would prevent pharmacies, hospitals, and other payers from stocking drugs that can't meet it.

By placing a barrier between medications and those who need them, this legislation threatens the lives and livelihoods of patients with rare and chronic diseases like my wife, whom I have taken care of full-time for the last five years. She has multiple autoimmune diseases that prevent her from living an active life or working. Most days, we cannot leave the house. She has a hard time eating and often chokes on her food and water. 

The most life-threatening disease my wife has is called Myasthenia Gravis (MG), a neuromuscular system disorder that can even restrict her breathing, forcing me to open her airway to keep her from suffocating.

We have been dealt a difficult hand, but a treatment called Soliris makes it easier. It keeps my wife stable, prevents her most serious symptoms, and allows her to stay out of the hospital. It helps her maintain a life, even if it's not the active Colorado lifestyle that we used to enjoy.

By limiting specialty medications, without even taking into account whether they are curative or life-sustaining, this legislation's upper payment limit discriminates against chronically ill patients and their caregivers, who already face enormous challenges. As one Colorado doctor notes in testimony about the proposal, “One unintended consequence of upper payment limit is that oncologists and other providers might have to default to using older, less expensive alternatives that are less effective..."

While my wife's current medication keeps her stable, we hope that a future one will bring significant lifestyle improvements or maybe even a cure. Yet drug price controls like this bill's upper payment limit threaten the pipeline of new medications by reducing investor funding needed to pay for research and development. If financiers don't believe they can recoup their investments in potential new medications, which often cost billions of dollars to develop, supply innovation will grind to a halt.

While this bill may lower total drug spending, it does so in a crude manner, essentially outlawing some specialty medications. It's not even clear that this price control would reduce overall health spending because it would lead to more patients, including my wife, ending up in the hospital, which is the biggest driver of health care spending. According to a review in the Annals of Internal Medicine, nonadherance to prescription medications already costs the health-care system at least $100 billion each year.

A better approach to reduce prescription drug spending is reforming the bizarre rebate system that characterizes the prescription drug market. Pharmacy benefit managers, which are middlemen between drug makers and insurance companies, demand massive payouts, known as rebates, from drug companies in return for placing medications on insurers' formularies (the lists of drugs that insurers promise to cover). It's a complicated and bizarre arrangement in a market economy like America's.

Rising rebates, which can make up about 50 percent of the list price of a drug, are the main culprit of "skyrocketing" prescription drug costs. In fact, net drug prices (list prices minus rebates) have remained steady or even fallen in recent years. Addressing this cost driver can reduce prescription drug costs without threatening patients' access to their medications.  

Yet this reform is more difficult for politicians to message to their constituents clamoring for action on health-care prices.

Patients and caregivers can help add clarity to the complicated world of prescription drug pricing reform. Instead of passing this bill that discriminates against patients and caregivers, Colorado legislators should work with us to come up with better and more equitable solutions to the problem.

Kristine Hutchinson


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