Patients living with asthma depend on access to inhaled respiratory medicines. As an asthma patient and the mother of three of my children who live with the disease, I know firsthand how important consistent access to diverse treatment options is for staying healthy.
However, high costs at the pharmacy counter force patients and parents like me to make some hard choices. We must do better. This is why Congress and the administration must reform one of the true drivers of high health costs – pharmacy benefit managers (PBMs).
How we got here
PBM practices negatively impact treatment access for all patients. Their burdensome practices are particularly acute for those living with respiratory conditions like asthma and chronic obstructive pulmonary disease (COPD).
The primary way the American healthcare system enables manufacturers to get medicines to patients is through PBMs. These PBMs often request high percentages of the list price of inhaled medicines, called a “rebate,” driving up the final price that the public sees. These rebates increase the longer a product is on the market and do not translate to savings for patients at the pharmacy counter — benefiting neither patients nor manufacturers.
Inhalers are subject to some of the highest PBM rebates in the country. In 2021, respiratory medicines were one of the three drug types that accounted for 73 percent of PBM rebates, amounting to over $48 billion in rebates from drug manufacturers. Despite the high rebates received from manufacturers, patients still are not seeing relief at the pharmacy counter. PBMs continue to negotiate higher rebates and increase their own revenue at the expense of patients.
When a patient’s out-of-pocket costs become too high, they could have no choice but to skip or ration doses, or completely abandon their treatment plan — a choice that can be deadly for someone living with asthma and COPD. We urgently need legislative solutions that address the true drivers of high health care costs. Patients shouldn’t have to choose between eating and breathing, but are often forced to decide between putting food on the table or affording their inhaler — all while PBMs continue to profit at the expense of patients.
Impact on patients
Children and adults living with respiratory illnesses, such as asthma or COPD, rely on medicines delivered through devices called inhalers to help reduce lung inflammation. Inhalers are unique because they must consistently and properly administer medicine to the correct part of the lung under any condition that can impact medication delivery, including extreme temperature changes, how an inhaler is transported, how well a person breathes, and more.
Simply put, the inhaler must work during a 90-degree track meet or when the temperature is below freezing; whether they are dropped, thrown in a purse, or stored upside-down. Patients likely take for granted the amount of rigorous testing and clinical trial investment that goes into their drug-device to have the confidence to use it time and time again.
With more than 40 million Americans living with either asthma or COPD, continued innovation ensures that inhalers can keep delivering medicine for patients when they need it and addresses unmet medical needs that persist for those living with respiratory illnesses.
Inhalers mitigate the potential of respiratory illnesses getting worse for patients, helping them avoid unnecessary hospital visits and to live without the fear of a debilitating onset of asthma or COPD symptoms. We know the climate crisis, pollution and other environmental factors contribute to the burden of chronic respiratory diseases; at the same time, caring for millions of people with these conditions carries an environmental impact. For example, COPD is the leading cause of hospitalizations in many countries, carrying a huge environmental and health system burden.
Chronic respiratory diseases like asthma and COPD are complex, difficult to treat, and often poorly controlled. Patients with well-controlled respiratory diseases have smaller carbon footprints than those with poorly controlled diseases. Ensuring that patients can access inhalers prescribed by their health care provider is a necessary step in the care delivery process.
However, with little transparency or oversight, PBMs have evolved to become one of the most influential decisionmakers in medication access and affordability — they decide how much a patient pays for a treatment and, often times, receive massive savings for a medicine that they do not pass on to patients.
Path forward
Although some legislators have investigated inhaler prices, the outsized role that PBMs play in driving up out-of-pocket costs for patients continues to fly under the radar. Manufacturers continue to step up and intervene, implementing various and robust savings programs to lower patient out-of-pocket costs, but their efforts alone won’t bring true affordability change for patients living with respiratory illnesses without meaningful PBM reform.
Patients living with chronic respiratory illnesses, including my family and myself, need relief from high health care costs now, and should not continue to be subject to the PBM “profit over patients” business model. It is long overdue for Congress to take action and reform the PBM system by ensuring they operate with accountability, oversight, and transparency. Until then, patients will lose out on treatment plans that improve lung health.
Tonya Winders, MBA, is president of the Global Allergy & Airways Patient Platform and the chair of the American Respiratory Care Foundation.