Why Asthma Matters: Preventable Deaths of Young Children, Minorities and Others

Why Asthma Matters: Preventable Deaths of Young Children, Minorities and Others
By Pamela Appea
Published Online for Why Asthma Matters-A Global Perspective

A Denver area mother recently filed a lawsuit alleging that a Medicaid “glitch” prevented her from getting appropriate medications for her asthmatic 9-year-old son in 2009. Zumante Lucero died of a fatal asthma attack only a few days after their unsuccessful visit to the local pharmacy.

In March 2010, a Texan high-school student named Austin Smith, 15, couldn’t breathe at school baseball practice. His face turned purple, then he collapsed a short while later. Austin was pronounced dead at the local emergency room. The cause? Asthma.

Also in 2010, a year ago this month, many New Yorkers are familiar with the case of the mother who in a rush to get to the hospital drove the wrong way down a street on her way to a Brooklyn hospital, allegedly hitting a parked car. In the backseat was her 11-year-old daughter Briana Ojeda who was in the midst of a serious asthma attack. A NYPD police officer stopped the family car but somehow failed to call for emergency ambulance care. The mother states the officer didn't want to help and didn't know CPR. A short while later, Brianna was pronounced dead at the hospital. Regardless of what happened or not, asthma killed Briana. (CPR probably would have had no to minimal impact on an individual in the throes of a major asthma attack or episode.)
 
As a mother of a five-year-old asthmatic boy, stories like those detailed above are truly appalling, but not entirely uncommon. Unfortunately preventable asthma deaths happen all the time. In fact, in the United States well over 4,000 people die of asthma on an annual basis. As a point of comparison, nearly 3,000 lives were lost on September 1th—. If you compare these deaths with asthma fatalities, not only are 4,000 people dying—1,000 more than 9-11—every year, but the numbers of asthma fatalities are increasing.

There is no little to no outrage or even knowledge about these asthma deaths. Worse yet, particularly when it comes to low-income or minority individuals, some mudslingers (online and otherwise) automatically point the finger at the asthmatics or the parents themselves for being responsible for the asthma death. Incredibly these hateful individuals harp on issues relating to the asthmatic's health insurance or lack thereof, income, socio-economic background, the number of children the parents have, their immigrant status or a variety of other non-issues. The bottom line is that asthma impacts everyone—no one is immune to developing asthma or being impacted by asthma.

According to the American Academy of Allergy, Asthma and Immunology, 34 million American individuals have had asthma at some point in their lifetime, while 23 million have asthma today. Statistics from a Center for Disease Control (CDC) study find that asthma lands as many as 500,000 Americans in the hospital every year. And some 300 million people have asthma worldwide, with over 250,000 individuals dying of asthma every year, according to the American Academy of Allergy, Asthma and Immunology.

And while asthma is a chronic disease, there is no reason why anyone with asthma should be dying. Further, minorities, children and many others are not getting the treatment they need even though they have significantly higher prevalence rates, as much as 20% or more higher.

Due to recent research led by a team of University of Chicago and other EVE national research consortium scientists and researchers, we also now have scientific confirmation that there is a strong genetic-ethnic component to asthma. This may partially explain why some individuals of African descent may have such a high prevalence of the chronic condition.

Yet, still despite all of this knowledge, patients like Zumante Lucero are not getting the medical care and the medications they need when they need them. For example, some insurance companies require patients to get in-person approval from their pediatrician or primary care physician before they can see a specialist like a pulmonologist who treats asthma. Worse yet, sometimes the wait for specialist care can be weeks or months. Medicaid and other patients may find they have more hoops to jump through just to get lifesaving medications.

In certain cases, some asthmatics may feel fine even without medications. Then weeks or months later they suddenly experience a severe asthmatic episode. It seems many people from parents to teachers to coaches to the individuals themselves are taken unaware by the serious asthmatic episode. That's simply how asthma is sometimes: one minute you're seem fine and the next minute, you can't breathe.

Every asthma patient, even those with mild or occasional asthma, should specifically speak to their employers, schools, afterschool and recreational programs, places of worship and neighbors about what to do in the event of an asthma emergency, giving them a copy of their individualized asthma action plan.

And too often people hesitate to call 911—when no medication or nebulizer is available or when the asthma medication is available but doesn't alleviate the asthma symptoms. Clearly, the most sensible thing to do is to seek immediate medical care. Disturbingly I've encountered too many people who seem to think they should wait until an asthmatic is unconscious, not breathing or has turned blue or gray to dial 911. That's way past the point when it may be too late.

Over the past 20 years, physicians, researchers and others have a better understanding of asthma and what is needed to treat it. In asthma parlance, asthmatics typically require “maintenance” and “rescue” medications. One or more medications is typically prescribed to be taken once or twice a day to maintain an asthmatic's lungs from developing problems. Rescue medications to exactly what the name implies and assist asthmatics who may have been exposed to a trigger and/or started having difficulty breathing. Unfortunately, too many low-income and minority asthmatics rely on rescue medications along or rescue medications without spacers (a device that helps ensure the young children properly inhale their medications) and worse yet stop taking their medications because they cannot afford the cost.

Asthma is an expensive disease to treat or manage. Medications for one are insanely expensive. One rescue pump alone could be as high as $150. And a person with moderate asthma with no insurance might easily incur expenses anywhere from $3,000 to $4,000 a year and up for asthma medications alone. If one counts medical health visits, specialist visits and emergency room care and hospitalizations, naturally the figure rises to double-digits.

Additionally asthma significantly impacts the entire family on multiple levels. If a child is sick, there is lost productivity since parents miss work to take care of their children. Then in turn, the child or children miss school. Some individuals with poorly managed asthma may visit the emergency room to get appropriate care because they are unable to set up a timely appointment with a specialist and/or don't have insurance These and other instances add up to hundreds of millions of dollars in emergency room care, medical costs, lost salaries and jobs and more.
 
Yes, the United States hopefully has nationalized health care mandates covering all asthmatic kids in the years to come, but the reality is, uninsured and under insured kids are still going to feel the sting of today’s scarlet letter, “the pre-existing condition” routinely dealing with bureaucratic “glitches”, problems and complications. Asthmatic kids couldn’t and shouldn’t have to wait for treatment or have to play cat and mouse games with insurance companies when it comes to treatment and comprehensive insurance policies and higher premiums.
 
Asthma must be taken seriously. I speak from experience: my 48-year-old mother died of an asthma attack in March 1990. She was a teacher who had adult-onset asthma in the last few years of her life. She died in the winter late at night and she had instructed me not to call the ambulance due to the cost since a family friend was going to drive us to the hospital instead. She didn't make it. As I said, I take asthma very seriously and you should too.

Now that my son has asthma, that thankfully is well-controlled due to the excellent medical care he receives, I still find particularly in the winter months that I must monitor him constantly. It seems from time to time, I encounter individuals, including health professionals, who seem to think I am 'overreacting' when I bring up my son's asthma symptoms and what I believe is best for him and his asthma care. Not only is this frustrating, but it is not acceptable.
 
 Let’s all start the dialogue of what to do, how to act, not react, before we have another Briana, Austin or Zumante in our emergency rooms, homes, classrooms or athletic fields, struggling to breathe and losing the battle.
 
 
 
 

University of Chicago genetics team identifies Asthma Susceptibility Gene PYH1N1 Unique to African Americans, Afro-Caribbeans....

University of Chicago genetics team identifies Asthma Susceptibility Gene PYH1N1 Unique to African Americans, Afro-Caribbeans; Two Other ‘Asthma’ Genes CRCT1 and GSDMB Impact European-Americans, African Americans and Latinos

As researchers and others in the scientific and medical community have long suspected, asthma is caused in part by genetic factors, explaining asthma’s high prevalence in minority communities.

A team of geneticists identified an asthma susceptibility gene called PYH1N1 that occurs only in individuals of African descent. The study, published in the July 31, 2011 online issue of Nature Genetics, was led by Dr. Carole Ober, co-chair of the EVE Consortium, and who is Blum-Riese Professor of human genetics and obstetrics/gynecology at the University of Chicago. Dr. Dan Nicolae, associate professor of medicine, statistics, and human genetics at University of Chicago was also a senior author of the study along with other team scientists and researchers.

PYHIN1 "may be the first asthma susceptibility gene identified that is specific to populations of African descent," Ober, Nicolae and other researchers wrote in the Nature Genetics article.

Using data assembled from nine previous genome-wide association studies, collectively known as the EVE Consortium, researchers analyzed a total of more than 2 million single nucleotide polymorphisms (SNPs) in 3,246 asthma patients, 3,385 non-asthmatic controls, 1,702 patient-parent groupings, 355 family-based cases, and 468 family-based controls.

The study found that this gene is not a rare variant, anywhere from 26% to 29% of individuals of African descent carry at least one copy, the researchers wrote.
The populations in these groups mentioned above were broadly categorized as African-American and Afro-Caribbean individuals, Latin Americans and European Americans.
Two other genes that increased the risk of asthma in Whites, Latinos and African-Americans and was also identified. These two genes are known as CRCT1 and GSDMB.

Naturally, there are numerous reasons why an individual may develop asthma and simply because an individual (of any ethnic background) does not have this gene does not automatically protect them from ever developing asthma.
The researchers noted while the associations found in this research are key they do not necessarily imply causality. In other words asthma’s genetic component is only partially a factor and/or potentially influenced by other genes, environmental factors, susceptibility factors and perhaps other reasons as well.
Having any of these ‘asthma’ genes does not necessarily mean a 100% guarantee of asthma in one’s lifetime, but makes it much more likely. Additional questions could include why do some individuals develop asthma as children, while others as adults? Why do asthma symptoms seemingly recede in some children as they grow? Is there a genetic factor in this process or is it a environmental and/or a benefit of older and stronger lungs and general constitutions?
While the study did not explicitly cover this topic since such widespread mass market asthma genetics tests in doctor’s offices may not be common for years, perhaps even decades, I was wondering when and if individuals might be able to take a test and know if they have this PYH1N1 gene. Will they be able to give you a useful approximation if you will develop asthma? Would such a test or genetic screening really benefit us? And thinking even further down the line about pre-natal genetic testing: imagine the scenario, of a doctor telling a mother-to-be, Congratulations, your baby is doing well, but may be at a higher risk of developing asthma since we have identified the PYH1N1 gene.

Torgerson D, et al "Meta-analysis of genome-wide association studies of asthma in ethnically diverse North American populations" Nature Genetics 2011; DOI: 10.1038/ng.888.