On the face of it, asthma is a diagnosis wrought with life-threatening, yet usually manageable, health risks. On the underbelly, it is a respiratory wildcat that exacts a financial bite. And its wounds run deep.
Bette Grey, BA, RRT, CPFT, founder of Columbia County Volunteers in Medicine, a free clinic in Mifflinville, Pa., recalled a worst-case scenario. "We had a patient who was 12 hours from an appointment at the clinic. She refused to go to the emergency department - she didn't have insurance. She died. At 50 years old, she just didn't go, and it cost her life."
Grey founded the clinic in part due to her own experience as a once-uninsured medical consumer. "I went to my primary doctor and the receptionist asked, 'Has your insurance changed?' I said my husband had lost his job and I didn't have any. Whoa! When you don't have insurance there's a difference - in body language and even in how physicians approach you. Everything changes," Grey said.
In the U.S., we spend about $10 billion nationally trying to manage asthma with medications, hospitalizations, and emergency room visits. Indirect costs, such as student absenteeism and caretakers' missed work days, add another $10 billion. For those impoverished, asthma affects them more significantly and disproportionately. Some families spend up to one-third of their total income managing a child with asthma.
Bette Grey, BA, RRT, CPFT, founder of Columbia County Volunteers in Medicine, a free clinic in Mifflinville, Pa., said the best way to keep asthma costs down is to educate patients. Here she demonstrates proper techniques for using an inhaler with a spacer.
When Grey worked as a hospital-based respiratory therapist, she encountered many asthma patients who were headed for a certain relapse because of a lack of insurance or funds. "I'd ask, 'Do you have your prescription for your MDIs, inhalers?' They'd say, 'Yeah, but I can't get them filled because I don't have any money.' I knew they'd be back."
A call for proactive practitioners
Now as clinic director, Grey helps the working uninsured get the care and medications they need. "I was put on this path for a reason," Grey said. "These are different patients, very humble when they come through the door. We're their last hope. I can help them with more than immediate care."
Case in point: Grey became an advocate for Bridges to Access, a patient assistance program for GlaxoSmithKline medications. "I could call in and say, 'Hey, there's this patient . he needs Advair,' and for 10 bucks he gets it. As a therapist I thought, 'Wow, this is pretty cool.'" As the free clinic has grown, companies have expanded their donations of nebulizers, holding chambers, samples of medications - all of which are passed on to patients.
Grey wants every RT to be armed with information on what is available from prescription assistance programs and how patients could possibly lower their refill costs at a big box store. For example, a ventolin HFA inhaler sold exclusively at Walmart costs $9 compared to other brands of HFA inhalers that cost $60.
"All RTs know there are people out there who can't afford inhalers," Grey reprised, "so why don't they do something about it?" She has taken her call-to-arms to professional organizations in hopes of gaining a national platform. But the wheels of progress grind slowly.
"I don't know how we sleep at night," she said. "In a country like ours, anyone who needs albuterol should be able to get it; no one should be unable to breathe."
Janice Gray of Oakland, Calif., was diagnosed with mild persistent asthma, and admitted, "I'm not as bad off as others." Yet she requires maintenance medication, and it doesn't come cheap. "I'm unemployed and have no health insurance; I don't know what I'll do when my medication runs out. I'm taking only half doses to extend how long I can last."
Elizabeth Saxe, 24, of San Diego, Calif., graduated from college without the promise of a job or health care coverage. "I was broke and could barely put food in my fridge. I worked random jobs just hoping to scrape together enough for rent, food, and inhalers . I stopped taking my Singulair because I just couldn't justify the cost."
Making a difference through education
Given that advocacy initiatives take time, what can be done in the short run to quell asthma's financial appetite? "The biggest thing a therapist can do now to help patients cut expenses is educate them," Grey said. "Teach them to use a spacer, do a nebulizer treatment. Keep them out of the ED, which could easily cost them $5,000."
Every RT should know what is available from prescription assistance programs and be able to tell patients how to lower their medication costs, said Bette Grey, BA, RRT, CPFT.
In the clinic, Grey spends 30 minutes with a patient going over meds, equipment, and writing instructions down. In a typical busy doctor's office, patients often just get the inhaler prescription and instructions in a box.
"You can throw meds at any disease," Grey said. "But if you don't explain to patients how to use the medication so it works effectively, they'll quit using it. Education is paramount."
Diane Herrick, RRT-NPS, AE-C, pulmonary programs coordinator for the Breathing Institute at The Children's Hospital, Aurora, Colo., agrees wholeheartedly. "Getting a patient's asthma under control is the biggest 'strategy' [for cost reduction]," she said. "We need to better educate patients to manage their asthma and avoid ED visits and hospitalizations. The best method? To have a consistent structured system in place."
Herrick has co-authored her facility's clinical care guidelines for asthma, based on the National Institutes of Health guidelines for the diagnosis and management of asthma, and she encourages others to do the same. "RTs should be involved in helping to write protocols and guidelines for consistently managing people with asthma," she said.
At the Breathing Institute, RTs phase in asthma education by providing small, digestible bites of information over time instead of all at once. If a parent is in the ED with a child, an RT might make a point to say, "See how she's pulling in her ribs? This is a sign her asthma is in really poor control." They continue these educational messages right through discharge when all the information is reviewed and an asthma action plan is detailed.
"We have reduced re-hospitalizations," Herrick said. "And we have one of the lowest lengths of stay in the country - about 48 hours. Truly, the biggest impact the RT can make in the hospital, ED setting, or outpatient clinic is by creating a care structure they implement and support with education for the family."
Action of another kind
While Grey and Herrick work patient by patient, a program known as MCAN has another approach: city by city. An acronym for Merck Childhood Asthma Network, Inc., MCAN is a nonprofit organization addressing the complex problem of pediatric asthma. Led by Executive Director Floyd J. Malveaux, MD, PhD, former dean of the College of Medicine at Howard University and an expert in asthma and allergic diseases, MCAN is targeting four high risk cities (Chicago, Los Angeles, Philadelphia, and San Juan, Puerto Rico) with nearly $4 million in programs combining evidence-based science, case management, and asthma trigger removal plans.
Funding covers a four-year enrollment for asthma-affected families, education, implementation, and evaluation. Previous MCAN investments in target cities resulted in a decrease in symptom days and an increase in the number of families whose children have asthma action plans. In addition, the number of children's missed school days decreased by 50 percent.
While children in low-income families account for about one-third of all children in the U.S., Dr. Malveaux noted they also represent about 60 percent of American children with asthma.
"For every dollar we spend on a child needing medical care in the U.S., it costs $1.50 if that child happens to have asthma," Dr. Malveaux said. "We don't manage this disease as well as we should. It ultimately comes down to prevention of symptoms, and assisting families to manage their own environment."
But when families are living in poverty, it can be difficult for them to control their environment. For example, Dr. Malveaux said, in public housing you do not always have air conditioning; it is too expensive to run. If you open your windows, you let in dust and pollen. In crowded neighborhoods you might be able to control your exposure to dust mites or cockroaches in your own unit but not in the units on either side.
"Poverty is not only devastating and demoralizing, it is a significant predictor of the disproportionate illness these children will have and the percent of family income that will be spent in managing their care," Dr. Malveaux said.
Education in the neighborhood
MCAN aims to affect a grassroots medical empowerment by sending trained asthma counselors - RTs, medical educators, nurses - into homes to pinpoint environmental triggers, educate families about symptom prevention, teach proper use of medicines and equipment, and instill asthma action plans, detailing when it is or is not necessary to seek emergency care.
"Our in-home asthma education is intense - it takes over two hours to go over the basics," said Yolanda Cuevas, MAEd, BSN, RN, RCP, who works with the Los Angeles Unified School District's "Yes We Can" Children's Asthma program, funded by MCAN. "We try to engage all of the senses in our training, using educational materials including models and pictures, because some of the parents are unable to read."
She noted many asthma counselors are bilingual because 71 percent of their students are Hispanic, and their parents may not speak English.
The most important thing for RTs to remember, Cuevas said, is "to educate people at their own level of knowledge. Without that, without real comprehension, it will all be in vain."
It is precisely this kind of community-tailored asthma education that can help people cut costs and live healthfully, Dr. Malveaux said. "When it comes to overcoming the enormous cost, health, and personal burdens of asthma, we know it requires more than dusting off the clinical research and parachuting it into different parts of the country. We need to be there, to see how the research translates on the ground."
With a proactive level of patient education, engagement, and advocacy, it is possible to change the snarling beast of chronic asthma into a sleeping kitten.
Contact Valerie Neff Newitt at firstname.lastname@example.org