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By Liora Engel-Smith

The medications that keep Karen Bumgardner breathing are expensive. At $711, one puff of Trelegy Ellipta, a long-acting inhaler she uses daily, costs about $24. The 40-year-old Cleveland County resident also uses about $100-a-month on  rescue medications to help her breathe during an attack, including an albuterol inhaler and nebulizer.

Bumgardner has eosinophilic asthma, a difficult-to-control subtype of airway dysfunction brought on by an overactive immune system. Like many people with e-asthma, Bumgardner is on a complicated regimen of antihistamines and other drugs, all to keep her lungs open and functioning. In addition to Trelegy, Bumgardner requires a monthly injection of the biologic drug Dupixent, a targeted, but expensive treatment that costs more than $3,000 a month.

Bumgardner, who up until recently worked as a licensed practical nurse at an assisted living facility, has a high-deductible insurance plan that costs $300 a month in premiums alone. Between coronavirus concerns and her health, Bumgardner can no longer work. Her husband, a plumber and pastor, works three jobs to support them both.

Bumgardner can only get these medications because she qualifies for free medicine through programs run by the pharmaceutical companies that make Trelegy and Dupixent. But these programs only pays if she stays insured.

“You have to do your research and ask for what you need,” Bumgardner wrote in a Facebook message. “So many people don’t understand that, especially elderly or lower educated people and it’s so wrong. Getting the care you need shouldn’t take so much work.”

Americans are spending more than ever before on prescription drugs. In 2019, almost 1 in 4 people surveyed told the Kaiser Family Foundation that they’ve had difficulties affording their prescription drugs. Researchers attributed most of these increases to newer drugs that are not only expensive but have no alternatives.

Few places are these price hikes more clear than in the asthma world, where most inhalers are brand name with no generics. Fueled by ozone-preserving regulations that phased out chlorofluorocarbons in 2008, pharmaceutical companies changed the carrier gas and design of their products and filed for new patents.

The prices of asthma inhalers — even old drugs, such as inhaled corticosteroids — have remained high ever since.

To help patients purchase these drugs, manufacturers rolled out discount and coupon programs, each with its own conditions and annual maximums. GSK’s Trelegy program Bumgardner uses, for example, only covers patients with private insurance and offers a maximum saving of $2,400 a year. The Dupixent program, also for people with private insurance, has a $13,000 annual cap.

“It’s a really significant issue for most patients,” said Ben Smith, a pharmacist at Duke Health. “I think a lot of people have seen the attention focused on the cost of diabetes medications, especially insulin. But we really see just as many issues for inhaler medications.”

An issue of access

Smith sees these access issues first hand in his role as director of population health pharmacy services at Duke Health. The program serves thousands of patients in the Duke network, employing a team of pharmacy technicians tasked with helping patients navigate a complicated morass of drug formularies, copays and pharmaceutical assistance programs, among other prescription-related issues.

Five pharmacy technicians spend almost half their time on issues related to drug costs, he added. Often, a myriad of barriers stand in the way of patients when they need an expensive drug such as an asthma inhaler.

Most don’t understand their insurance plans well enough to know if their prescription is covered. Patients may also not know about discounts and assistance from pharmaceutical companies. And even if they’re eligible, some may not have the health literacy or even a decent-enough internet connection to fill out the necessary registration forms.

These pharmaceutical discount programs often exclude Medicare and Medicaid, as well as Tricare, the insurance coverage for military families.  The programs even often exclude people who don’t have insurance at all. Though websites such as GoodRx aggregate discounts that everyone, including the uninsured, can use, in most cases the cost of the drug remains too high for some patients, even after the discount, Smith said.

For example, GoodRx lists a coupon that gives a 75 percent discount on Advair, a popular asthma inhaler. Many uninsured patients would struggle to afford even that $100 price tag once, let alone every month.

This isn’t an isolated problem. A report from the Centers for Disease Control and Prevention found that almost half of asthmatic adults under 65 said they could not afford their medications, see a primary care physician or see an asthma specialist.

Without inhalers, however, uninsured patients tend to cycle in and out of the emergency department, getting treated for asthma attacks that could be avoided with the right medication regimen. That reality couldn’t be clearer in eastern North Carolina, where poverty and health disparities are common and asthma-related emergency department visits were highest in the state, a 2018 study showed.

“Unfortunately, we do see that a lot of families who end up in the emergency room because [the patient] ran out of their inhaler and they didn’t have access to a refill or couldn’t afford it,” said  Theresa Blount, a nurse who oversees Vidant Health’s pediatric asthma program.

No one solution

In the fragmented health care system of the United States, medication access is complex to begin with. Thousands of actors, from pharmaceutical companies to pharmacies, insurance companies and even the federal government participate in the process, so much so that drug pricing varies widely.

Sometimes, a pharmacist’s kindness can also influence the price. Syam Bandi of Greensboro’s Adams Farm Pharmacy sees a fair number of patients who can’t afford their asthma medications even after he helps them find manufacturer coupons.

Patients who are struggling to breathe often walk into the pharmacy with a rescue inhaler prescription they got during an urgent care visit. Bandi sells them the medication at-cost.

“Sometimes they cannot even afford 10, 20 dollars,” he said. “And it’s very hard because it costs me $38 to get it.”

Other forms of charity also fill some access gaps. Nonprofits including the PAN Foundation, the HealthWell Foundation and the Patient Advocate Foundation, offer medication assistance funding for certain asthmatics, but most of these funds are not taking new applicants.

Community health centers are another avenue for the under- and uninsured to get their prescriptions filled. A federal program known as 340B allows these clinics to buy and distribute deeply discounted drugs, said Angie Kent-Mitchell, pharmacy director at the Roanoke Chowan Community Health Center, which serves Hertford and the surrounding counties. Depending on income and insurance, patients may receive additional financial help.

The goal, Kent-Mitchell said, is to make sure every patient walks away with a drug that treats their condition and works for them financially. It’s a process that requires time, knowledge and trust.

“We know what types of constraints they have,” she added. “So we’re already thinking about how we can help them prior to them even asking, or letting us know that the price would be too expensive. We go ahead and advocate for them on the front end. They usually don’t even have to ask.”

In North Carolina, low-income people without health insurance can also get some medications for free through NC MedAssist, a nonprofit pharmacy that serves an average of 18,000 patients a year.

“I think a lot of people do fall through the cracks,” said NC MedAssist pharmacist Dustin Allen. “I feel like we’ve got all these safety-net organizations that clearly do their best to identify some of these concerns.”

But no form of assistance, Allen said, addresses everyone’s needs.

A shift in market forces

There is one more hope for patients who need expensive inhalers. Many of the patents that make asthma medications so expensive are slated to expire over the next few years. Some already have. In 2019, the FDA approved generics for three rescue inhalers and one for the long-acting inhaler Advair, cutting the cost of these medications significantly.

But not all long-acting inhalers are alike. Bumgardner, the Cleveland county asthmatic, tried Advair and a host of other inhalers, but none worked as well as the Trelegy and Dupixent regimen she’s on now. Generics for either drug won’t be available until at least 2030, which means the roughly $3,700 price tag under Bumgardner’s insurance likely won’t change anytime soon. Neither would her finances. Without the copay assistance programs, Bumgardner said she’d likely be forced to go off both drugs, regardless of the health consequences.

“That’s just not in our budget at all,” she wrote. “But we will cross that bridge when we come to it.”

A pharmacist’s guide to dealing with expensive drugs

Angie Kent-Mitchell, pharmacy director at the Roanoke Chowan Community Health Center, has a few tips for patients who need financial assistance with medications:

  • Visit your local federally qualified health center: Health centers sell deeply discounted drugs and offer financial assistance for low-income people who don’t have insurance. To find a health center near you, visit the North Carolina Community Health Center Association.
  • Ask your doctor for samples: Some physicians’ offices have free samples for patients. The sample gives patients just enough time to work out pricing issues without feeling pressured to spend money. “I tell my patients, ‘save up a few dollars, you have a kind of a time where you don’t need to spend money.’”
  • Talk to your insurance company: Every insurance company has a list of drugs they cover at a lower cost. Kent Mitchell said there is almost always a similar prescription that costs less. To find these alternatives, she advises patients to call the toll-free number on the back of their insurance card. “Ask them ‘what else could I use that would be more economical?’,” she said. “[And then] give the information to your doctor.”
  • If all else fails, talk to your pharmacist: Patients should tell their pharmacist if they can’t afford a medication. Expensive drugs often have coupons or copay assistance cards to make them cheaper. Some coupons for inhalers have a cap on the number of prescriptions that can be used, but often drug manufacturers will weave those rules to keep someone on their product. A pharmacist can guide patients through the application process.
  • Get outside help if you need it: Ask a family member, friend or a care manager from your county agency on aging for help making phone calls.
  • Check if you qualify for other forms of financial assistance: Uninsured, low-income patients can also contact NC MedAssist to receive free prescriptions by mail. The agency also distributes free over-the-counter medications.

Liora Engel-Smith

Liora Engel-Smith joined NC Health News in July 2019 and covers policies, programs and issues that affect rural areas. She has previously worked for the The Keene Sentinel in New Hampshire and the Muscatine...