When my daughter's asthma medication doubled in cost, I learned we weren't the only ones paying a premium to breathe

• I was shocked when my daughter's monthly asthma prescription costs doubled.
• I learned that Americans spent $35.5 billion (and rising) on asthma conditions alone.

I stood in shock at the pharmacy counter. "Your copayment is $75," the pharmacist said. The pulmonologist changed my daughter's asthma-inhaler prescription from Flovent to Advair that morning, but I was not expecting this. I swallowed and handed over my credit card, mentally preparing for the fact that our monthly prescription costs had suddenly doubled.

It turns out I wasn't alone in experiencing this sort of sticker shock; the latest studies show that Americans spent $35.5 billion on asthma conditions in 2016 alone (with prices increasing every day), the bulk of which is spent on prescription medications. The $150 monthly copayments for my children's asthma medications place our family among the 25 million Americans paying a premium just to breathe.

Although most asthma conditions can be controlled with proper treatment and medication, the Centers for Disease Control reported that "above-average copays" deter patients from filling their prescriptions. Uncontrolled asthma leads to more hospital visits, more missed school and workdays — and it kills an average of 10 Americans a day, the CDC says. Asthma disproportionately affects racial and ethnic minorities and lower-income people. The high cost of medications to treat and control this disease widens these disparities even further.

New medications and the high cost of generic drugs have dire consequences

Many experts attribute the high cost of asthma medication and the increase in asthma diagnoses and complications to climate change. The US Clean Air Act of 2005 banned the use of chlorofluorocarbons, which contribute to depleting the ozone layer. This required the replacement of CFC asthma inhalers with a new type of inhaler — and the opportunity for pharmaceutical companies to renew their patents by inventing new medicine-delivery mechanisms. Renewed patents are detrimental to asthma patients because they cause a delay in the availability of these drugs at a lower price on the generic market.

Even when the patents expire and the generic versions of these medicines become available, the generic versions themselves are often costly. Fluticasone propionate HFA, the generic for the daily-controller medication Flovent HFA, retails between $88 to $277. For those underinsured or without insurance, these monthly prescriptions can add up quickly.

Between pharmacy deductibles and copayments, Le-Ann Clark Griese, an information-technology project manager in New Jersey, pays about $340 a year for her husband's asthma inhalers. Monica Iskander, a calligrapher in California, requested a specific type of inhaler and spacer (a plastic holding chamber that gives space for the medicine to break down into smaller drops before inhalation) to help her son use his medication more effectively.

Her insurance denied the request, and her family could not afford the monthly $300 retail cost. "I was pretty upset and frustrated that a 4-year-old was being denied coverage," she said. Thankfully for Iskander, their doctor was able to find a more effective medication that was covered by her insurance and so more affordable.

Learning to be savvy can help you save

Eva, a nurse practitioner from Arizona, said that she has had to be "savvy" about her asthma-medicine costs. While uninsured, she paid $36 for a yearly prescription plan at Kroger's that covered her daily medications, and she used the manufacturer's patient-assistance program for her $400-a-month Dulera inhaler prescription.

"It's a very convoluted web behind the pharmacy counter," Mary Andrawis, a pharmacist and the founder of the Washington, DC-based Serafina Health Strategy, told Insider. Pharmacy-benefit managers, insurance companies, and pharmaceutical companies are all involved in pricing medications, contributing to a system void of transparency. National legislation like the bipartisan Prescription Pricing for the People Act, the Pharmacy Benefit Manager Transparency Act, and the Affordable Prescriptions for Patients Act all seek to address this.

The Inflation Reduction Act passed in August last year requires pharmaceutical companies to offer rebates to patients if they raise drug prices on their prescriptions faster than the inflation rate. It also mandates that by 2026, Medicare will negotiate directly with pharmaceutical companies over the most expensive medications. As the country's largest insurer, Medicare "sets the tone and the cadence for others to follow," Andrawis said.

Copay-assistance programs are helpful but not without complications

Lindsay Meyer, the director of US corporate communications for GlaxoSmithKline, one of the world's largest manufacturers of asthma medication, said in an email that "difficulties with manufacturing what are called 'complex drug-device combinations' such as inhalers" might be one of the factors behind the high costs of asthma medications. She also said that GSK is committed to "responsibly pricing our products" and pointed to its participation in patient- and copay-assistance programs to mitigate the out-of-pocket costs for eligible participants.

Christine Malati, a pharmacist who has worked in government, community, and nonprofit capacities, facilitated assistance programs for many eligible patients not covered by Medicaid when she volunteered at a nonprofit clinic in Northern Virginia. Malati said these programs are funded by the "pharmaceutical companies' corporate social-responsibility programs in exchange for tax benefits."

Individuals ineligible for Medicaid can also apply for patient-assistance programs, copay-assistance programs, rebate programs, and other options — if they know how to. Griese's copay-assistance program, arranged by her health-insurance company, saved her an additional $3,200 every three weeks to pay for her daughter's Dupixent injections, which help control her severe asthma. Patients whose insurance companies don't facilitate these programs can apply directly to the drug manufacturer for help.

The Asthma and Allergy Foundation of America provides a list of asthma medications and links to manufacturers' patient-assistance programs for ease of reference. RXAssist provides a database of these programs for patients and healthcare providers. Not all medicines are covered, though, even under these programs. My daughter's inhaler, the popular asthma drug Advair, was dropped off the GlaxoSmithKline copay-assistance program on June 1. Until the "convoluted web" of pharmaceutical pricing is untangled, Americans living with asthma need to navigate the system themselves to breathe more easily.