Let’s talk! And I’ll share some tales

US House introduces School-based Allergies and Asthma Management Program Act

The Asthma and Allergy Foundation of America  (AAFA) sent out this notice today:

The School-Based Allergies and Asthma Management Program Act (H.R. 2468) was introduced on May 2, 2019, in the U.S. House of Representatives, by House Majority Leader Steny H. Hoyer (D-MD) and Representative Dr. Phil Roe (R-TN). This bill was created to amend the Public Health Service Act. According to this act, states that require public schools to have asthma and allergy management programs would get preference for certain grants.

Schools will have a better chance of receiving grants if they have a comprehensive school-based asthma and allergy management program. The program would have to include:

      • Methods to identify all students who have allergies or asthma
      • Individual student action plans
      • Education for school staff
      • Efforts to reduce environmental triggers
      • Support for families managing asthma and allergies

Schools must also have a school nurse or trained staff on site during operating hours to give medicines for both asthma and allergies.

A state can decide to not put this type of program in place. But the hope is that this bill will motivate states to pass these laws so they can get better access to grant money. These measures will help schools take better care of students with asthma and allergies. It also raises awareness that asthma needs treatment just like allergies. It will result in healthier and more productive students.

Dying from asthma is too easy

The Asthma & Allergy Foundation had a really difficult post today (May 9, 2019) – and it’s one y’all should read. I’ve read Peter DeMarco’s moving story about his beloved wife, Laura Levis, before, and about her death, alone on a sidewalk outside a locked ER door in Boston. It never fails to shake me. I have plans in place so it will never happen to me.  I’m divorced and live alone, but know how to reach my neighbors on either side.   And yet there have been times when it’s been close, when I’ve wondered whether I could get help fast enough. 

This story makes me think that I’m too-often pigheaded about inconveniencing others.  I have to consciously think now, “Remember Laura.”

Maybe you are thinking, “I don’t want to read that! It’s going to be too sad.”

Avoidance doesn’t save you

But here’s the thing: Many, if not most, of the people who die from asthma MIGHT have been saved!

They didn’t think their asthma was “that bad,” so they didn’t talk to their doctor about the increasing number of nights they’d wake coughing, or have bad “congestion” or colds. Or how much harder it was to do the things they regularly did, like play with the kids outdoors.

They didn’t get their prescriptions filled or let their Epi-pens expire because they couldn’t afford the cost of new ones.  Instead of telling the doctor about their situation and seeing if they qualified for free or low-cost ones, they ignored the situation, as if nothing would ever happen.  How often people tell me they can’t afford the drugs and then just shrug!

Or they didn’t like the side effects of the preventive medication – and asthma “wasn’t that serious of a disease,” or their case “wasn’t that serious.”

Until it is. It only takes once.

– Debbie

https://community.aafa.org/blog/losing-laura-each-day-10-too-many-people-die-from-asthma

Losing Laura: Each Day 10 Too Many People Die From Asthma

AAFA Community Services

AAFA COMMUNITY SERVICES  

On May 7, 2019, the Asthma and Allergy Foundation of America (AAFA) released our 2019 Asthma Capitals™ report. In the report, we look at three asthma outcomes in cities across the U.S.: asthma prevalence, asthma-related emergency department visits and deaths from asthma.

About 3,600 people die each year due to asthma. That’s about 10 each day. And that’s 10 too many. The people at greatest risk of dying from asthma are black Americans, seniors and women. 

In the essay below, you’ll hear from Peter DeMarco of Boston, Massachusetts, who lost his wife, Laura Levis, to asthma. Boston ranks #8 on our 2019 Asthma Capitals report. It has such a high ranking because of a high number of people with asthma and asthma-related deaths. 

This Is What Laura Would Tell You About Asthma, If She Could

By Peter DeMarco, Laura’s husband, of Boston, Massachusetts (overall #8 on Asthma Capitals)

Laura was afraid of heights – so she insisted we hike the highest mountains. It wasn’t enough for her to just lift weights at the gym: she had to enter women’s powerlifting competitions. To land her dream job at Harvard University, she endured nine exhausting rounds of interviews.

Laura thrived on challenges, so it’s no surprise that’s how she approached her asthma.  It was just another challenge she needed to overcome.

I think that is why she decided to walk alone to the hospital the morning her attack struck.  She was staying only a few blocks away, so she knew she’d be there in a couple of minutes, faster than calling an Uber.  It was 4 a.m., and I wasn’t there, so maybe she felt embarrassed about waking someone else up to ask for help.

Laura had dealt with asthma for nearly 10 years, so she thought she knew what to expect – she could almost sense when a heavy pollen day, or extreme humidity, or a very dusty room might trigger it. When an attack did become severe, we always made it in plenty of time to an emergency room or to an all-night CVS pharmacy for nebulizer fluid. I would usually have to prod her to go though; she always thought her attack would subside if we just gave it another few minutes.

She always believed she could beat it herself.

Peter and Laura

Laura was so confident that September morning – so sure this would be just “another” attack – that she threw gym clothes into her backpack, perhaps thinking she could get in an early workout once she left the hospital. Nevertheless, she must have been so relieved when she reached the emergency room door.

But Laura did not beat her asthma that morning, because something terrible happened. Something she could never in her life have anticipated. The hospital door was locked, and there was no one in sight to let her into the emergency room.

Everything that could have gone wrong for Laura did go wrong that morning. The hospital security desk was left unattended all night … her 911 distress call was mishandled … those responsible for finding Laura went to the wrong hospital door. All unexpected. All beyond Laura’s control.

You can read more if you wish in the Boston Globe in a story called “Losing Laura,” which I wrote. Laura was just 34 years old, and now I am her widowed husband.

I have written this essay for the Asthma and Allergy Foundation of America because Laura can’t have died for no reason. Her story just has to save someone else’s life.

So this is my message to you – no, this is Laura’s message to you:

Nothing is truly in your control until your asthma is back under control.

Please, please, please factor in the unexpected.  Make it your mantra. Your inhaler could have a defective cartridge.  You could be stuck in standstill traffic due to an accident.  The hospital door you try could be locked, with no one in sight. It’s not about what you know from past attacks. It’s what you don’t know about the next one.

When an attack strikes, don’t be alone – tell someone as soon as you can. Don’t be embarrassed to ask for help or think that by telling someone you are letting asthma win. Without oxygen, you have between three and six minutes to live. Telling someone you’re having an attack could save your life. That is how you beat asthma, by living.

By living.

Peter and Laura

I wish more than anything in the world that Laura had done that. If only she’d woken up the person she was staying with. If only she’d dialed 911 the moment her attack turned severe. If only she’d called me.

It has been just over two and a half years since her attack. You cannot imagine what it is like to lose the person you love to asthma. Tears are falling onto my keyboard as I type this.

So please, remember my wife. Remember Laura Beth Levis. But more importantly, remember her message.

When an attack strikes, tell someone.

Don’t be alone.

Don’t die alone.

How can we reduce asthma deaths?

What can we do to reduce asthma deaths? Having your asthma under control greatly reduces the risk of dying from asthma. If you have asthma, see an asthma specialist, such as an allergist or pulmonologist, to help you come up with an asthma management plan. This includes:

Every effort you make matters. But it’s more effective if we all work together. Join us during National Asthma and Allergy Awareness Month to spread awareness about asthma. Encourage those around you to do the same. When everyone understands asthma better, we can all work to create more asthma-friendly schools, workplaces and communities.  You can also advocate on a local and national level for protections for people with asthma. Here are just a few ways you can help improve asthma in your area:

      • Share our Asthma Capitals report with local leaders, politicians, schools and health care providers
      • Sign up for AAFA’s online community to opt-in to be a patient spokesperson, and take action on our advocacy alerts
      • Reduce your contribution to air pollution
      • Vote for asthma-friendly policies
      • Spread awareness on your personal social media account
      • Support AAFA’s mission

                                                                                    – AAFA

NIH Statement on World Asthma Day 2019

May 7, 2019

On World Asthma Day 2019, the National Institutes of Health stands with patients, families, advocates, researchers and health care professionals around the globe to raise awareness about this common chronic respiratory disease. 

In 2016, asthma affected 26 million Americans and nearly 340 million people worldwide, according to the Global Burden of Disease study. The disease can profoundly affect quality of life and financial and emotional health and is a major cause of missed time from school and work. Severe asthma attacks may require emergency room visits and hospitalizations, and can be fatal. 

Asthma flares result when the airways of the lungs become inflamed by a variety of triggers in the air, such as indoor pollutants and allergens from dust mites and mold, as well as outdoor air pollution. This inflammation narrows and obstructs the airways, causing symptoms like wheezing, coughing, chest tightness and difficulty breathing.

NIH-funded research has greatly increased knowledge of asthma and led to better treatment and prevention options. Implementing what we know in clinical and community settings, however, still needs urgent attention. Putting into practice proven strategies for asthma prevention, control and care not only will help reduce the burden of the disease, it also will help address health disparities that have resulted in asthma’s disproportionate impact on racial and ethnic minorities and families living at or below the poverty line. 

Three Institutes seek solutions

Three NIH institutes support and conduct studies on asthma—the National Heart, Lung, and Blood Institute (NHLBI); the National Institute of Allergy and Infectious Diseases (NIAID); and the National Institute of Environmental Health Sciences (NIEHS). This research portfolio reflects the complexity of medical, environmental, social and economic factors that influence the causes, management, treatment and prevention of this condition. 

The NHLBI’s Division of Lung Diseases, which is celebrating its 50th anniversary this year, leads the efforts to understand the biology of asthma development, progression and severity and to optimize treatment for patients. Despite significant research strides, many people continue to have poorly controlled asthma, which underscores the importance of improving the adoption of current evidence-based interventions and developing new ones. 

As it has improved therapies and prevention for patients, NHLBI’s research has contributed to a better understanding of asthma as a complex disease with a broad range of genetic and biological variability. This heterogeneity affects individual patients’ responses to triggers and treatment, posing a challenge to managing the condition and calling for more personalized methods.  

Funded by the NHLBI, the Precision Interventions for Severe and/or Exacerbation Prone Asthma Network will be conducting clinical trials to identify personalized medicine approaches that treat severe asthma more effectively. It has established 10 centers to test a series of treatments approved by the U.S. Food and Drug Administration based on each patient’s specific biology or biomarkers. Recruitment will begin this year.

Collaborating for high-risk children

NHLBI also funds the Asthma Empowerment Collaborations to Reduce Childhood Asthma Disparities. This program supports clinical trials to evaluate Asthma Care Implementation Programs that provide comprehensive care for children at high risk of poor asthma outcomes, such as low-income minority children. The program aims to provide integrated care for children in all spheres of their lives and to create programs that will be sustainable after the grant support ends. 

Additionally, NHLBI’s Center for Translation Research and Implementation Science (CTRIS)(link is external) serves as a focal point within the Institute to plan, foster and support research to identify the best strategies for ensuring successful adoption of evidence-based interventions.

NIAID’s Inner-City Asthma Consortium (ICAC) studies the causes of asthma in urban children as part of its effort to better understand the immune responses that lead to asthma. This work enables development of improved prevention strategies and treatments. ICAC oversees nine clinical research sites in the United States, and its observational studies, clinical trials and related research explore the convergent risks of allergen exposure, allergen sensitization and viral respiratory infections.

Programs that aim to decrease exposure to household allergens, such as dust mites, cockroaches and rodents, decrease asthma symptoms and health care visits in children with allergic asthma. Paradoxically, early-life exposure to certain allergens and bacteria may protect against asthma. The Urban Environment and Childhood Asthma study showed that children exposed to high indoor levels of pet and pest allergens during infancy have a lower risk of developing asthma by 7 years of age. 

Common cold responsible for autumn attacks

ICAC research established that omalizumab can prevent most asthma exacerbations in the autumn, many of which are caused by the common cold. More recently, ICAC investigators have unveiled pathways in the development of asthma exacerbations associated with the common cold, opening the possibility of identifying further therapeutic agents to prevent exacerbations. 

In addition, a comprehensive study by the consortium found that inflammation of the mucous membrane of the nose, known as rhinitis, is rampant in urban children with asthma. It is also very difficult to control and strongly linked to asthma symptoms and attacks.

At NIEHS, scientists study asthma by looking at the interplay between the environment and the immune system. The Natural History of Asthma with Longitudinal Environmental Sampling (NHALES) study at the NIEHS Clinical Research Unit is examining how the environment affects asthma symptoms. 

During the past 40 years, NIEHS has supported some of the most important air pollution and asthma research studies. NIEHS research has shown that air pollution makes people with asthma sicker and worsens their breathing. In addition, some forms of air pollution, especially diesel and traffic-related pollution, may also cause children to develop asthma.

Air pollution key factor

NIEHS-funded research from the Cincinnati Childhood Allergy and Air Pollution Study has shown the important role of ambient air pollution, including roadside pollution, as a cause of asthma and of its exacerbation in the United States.

The NIEHS’s Environmental Cardiopulmonary Disease Group focuses its research on the role of the environment in the origin of asthma and allergic diseases. In addition to large national studies, the group has led environmental interventions to reduce indoor allergen levels in homes, which has improved scientists’ understanding of indoor allergen and endotoxin exposures and their role in allergic disorders. 

The NIEHS/EPA Children’s Environmental Health and Disease Prevention Research Centers study factors that impact children’s health, with several centers focusing on asthma. For example, the Children’s Center at Johns Hopkins University found that vitamin D protects against pollution-induced asthma.

NIH-supported scientists continue to work to prevent and treat asthma every day of the year. But this May, Asthma Awareness Month, and today especially, NIH honors the children and adults who face the daily challenges of asthma, and we renew our commitment to ensure that our research discoveries turn into improved health outcomes for all of them.

Part of the National Institutes of Health, the National Heart, Lung, and Blood Institute (NHLBI) plans, conducts, and supports research related to the causes, prevention, diagnosis, and treatment of heart, blood vessel, lung, and blood diseases; and sleep disorders. The Institute also administers national health education campaigns on women and heart disease, healthy weight for children, and other topics. NHLBI press releases and other materials are available online at http://www.nhlbi.nih.gov. 

NIAID conducts and supports research—at NIH, throughout the United States, and worldwide—to study the causes of infectious and immune-mediated diseases, and to develop better means of preventing, diagnosing and treating these illnesses. News releases, fact sheets, and other NIAID-related materials are available on the NIAID website.

NIEHS supports research to understand the effects of the environment on human health. For more information on NIEHS or environmental health topics, visit www.niehs.nih.gov or subscribe to a news list.

About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov. 

Copyright © 2019 National Institutes of Health

Peanuts & planes – is it really a problem?

Get the best explanation from the scientists and physicians working on peanut allergies. And a copy of my emergency medical flight kit components.

I was at a party recently and someone asked me a really good question:

“How is it that someone sitting in the back of an airplane can open a bag of peanuts, and trigger an allergic reaction in someone dozens of seats away, when neither of them has moved and no one has walked by or touched one and then the other?”

I pointed out my obvious lack of credentials and standing, but said I had a secret weapon.  I volunteer with the Asthma & Allergy Foundation of America, aafa.org, a truly wonderful organization and source of information.  They have a great allergist and I asked him. 

Hi Debbie. This question was addressed in a recent medical publication which you may not have access to (https://www.annallergy.org/article/S1081-1206(17)31162-6/fulltext)

Dr. Eagan and Dr. Greenhawt reviewed the evidence on the question regarding risk of reaction for a patient allergic to peanut during air travel. I have often thought of this as well, given my own daughter has severe peanut allergy.

In summary, there are reports of reactions on airlines which are thought to be due to inhalation peanut dust in the cabin.  The risk of anaphylaxis with this type of exposure is rare.  And it is felt that it would be more likely that there is accidental transfer of protein and ingestion.

I have provided some quotes from their discussion in the article above:

“Although allergic reactions on commercial airlines have been reported, current literature is based on self-report of symptoms, which is subject to bias, so true prevalence is unknown.34–36 Sicherer et al34 surveyed patients in the National Registry of Peanut and Tree Nut allergy and found that 62 of 3,704 individuals reported a reaction on an airplane, with reported ingestion exposures being associated with the most severe symptoms. Among the 14 patients who reported symptoms from inhalational exposure, the timing and exposure history was not convincing in 3, and in the remaining 11 participants, more than 25 passengers were eating peanuts at the time of the reaction in question.34

“Greenhawt et al35 reported similar findings with a more recent survey of participants in the Food Allergy & Anaphylaxis Network. Of the 150 participants who reported having an inflight reaction, 15.7% reported reactions attributable to ingestion, with inhalational, skin, and unknown exposure accounting for 48.6%, 27.9%, and 7.8% of reactions, respectively. Surprisingly, although 33% of participants reported symptoms consistent with anaphylaxis, epinephrine was only used in 10%, highlighting the under treatment of reactions.35 “

“Although there is a report of peanut protein being recovered from airline air filters, representing a cumulative exposure,38 studies on inhalational and contact exposures to allergens do not support the notion of systemic reactions with casual contact. As well, it is unclear what particle denoted in an air filter represents because these particles could be pulled from circulation without passage through the cabin (Fig 1).39 Therefore, it remains somewhat likely that the reported inhalational reactions were caused by unnoticed ingestion (peanut inadvertently consumed through casual hand to mouth contact of uncleaned residual levels on surfaces) or another source, such as anxiety-induced symptoms. 35 Overall, inflight medical emergencies are rare, with allergic reactions contributing to a small portion of all events, and it appears that most peanut allergic passengers fly without event. Therefore, there appears to be no evidence to support that commercial air travel is dangerous or should be contraindicated for the peanut allergic patient.”

“Although the risk of reaction is low, all patients with a food allergy who fly should have emergency medications with them, including 2 epinephrine autoinjectors, and should ensure that epinephrine is used for treating severe symptoms.8 The decision to travel on a commercial airline that serves a culprit allergen is individual, but again the available evidence demonstrates that the presence of an allergen is of low risk, likely not to cause any problem as long as the allergen is not directly ingested. We believe that peanut or tree nut allergy should not serve as contraindication for travel in most circumstances, given a low likelihood of an event occurring and multiple risk-reducing behaviors that passengers can implement.”

Douglas T. Johnston D.O. FAAAAI, FACAAI
Medical Scientific Councilmember, Asthma and Allergy Foundation of America

Assistant Professor of Internal Medicine / Allergy & Immunology
Edward Via College of Osteopathic Medicine – Carolina Campus

Adjunct Professor, Department of Public Health Sciences
College of Health and Human Services
University of North Carolina at Charlotte

We encourage you to register for AAFA’s online community for additional information and support: https://community.aafa.org/join.

Travel asthma emergency kit

I found this reassuring.  In all the traveling I’ve done, I’ve seen medical emergencies, including asthma, and a couple of allergy issues, but never requiring more than Benedryl.  I’ve never seen an obvious need for Epi-pen on a plane. I’ve had a few bad times on airplanes, but again, never to the level of needing help beyond moving me to a different seat (and those were triggered by perfume in one case and a cat smuggled into the cabin in another).

What always amazes me, though, is just how often parents of highly allergic children, who have witnessed their children almost dying from anaphylaxis, will fail to have a fully equipped emergency asthma/allergy kit with emergency instructions (called an Asthma Action Plan – AAP) printed out and easy for others to find.  As in ON THE CHILD or immediately next to the seat.

Having it in your carry-on, crammed above seats several rows behind you, and not obviously known as yours, will do you no good in an emergency. Same for your child. It should ALWAYS be physically on you/him or her in a fanny pack or obvious medical bag. (Get one with a big cross or asthma & allergy or KFA* printed on it.) I carry a large brightly colored tote on board, with all kinds of things medically necessary in an emergency in it, medical kit front-and-center.

PS – People frequently ask me what precautions I take when I travel, and the meds I take along. So here’s the emergency asthma & allergy part of that:

    • Two Epi-pens, unexpired;
    • Benedryl capsules and Benedryl liquid; 
    • Benedryl ointment for skin contact;
    • Zyrtec;
    • Flyp portable nebulizer (an incredible tiny, battery-powered nebulizer not much larger than a deck of cards – what an improvement!) and nebulizer solutions;
    • Prednisone (10 mg.) tablets;
    • Rescue inhaler (levalbuterol), azelastine nasal spray and eye drops;
    • Disposable masks and gloves, medical grade;
    • Individually wrapped alcohol pads (make sure they are still “juicy”); and
    • Alcohol-based hand sanitizer.

Be sure and ask your doctor the maximum number of Benedryl capsules and Zyrtec (or other antihistamine) you can take in an emergency and write it down on your plan.  Ideally ask your pharmacist put it on a label for the package, and put that into your emergency kit.

Sometimes a few sips of liquid Benedryl can help ease any throat swelling and allow me to swallow capsules, but too much will cause me to choke and vomit.  Discuss what to do in that situation with your doctor and put that in your emergency plan.

I board planes early because of my disability. Using alcohol pads, I wipe off the light and call buttons, armrest, belt buckle, tray table, even the parts of the seats I might touch. (I have trouble reaching above my head to the luggage bins, so those usually get a pass. I also regularly wipe off the handles and outside of my luggage, walker and purse with alcohol.)

*KFA – Kids with Food Allergies – is a wonderful off-shoot of AAFA, with helpful info on food allergies for us adults, too.  I only wish this would have been available when we were little.   My mom struggled so to keep us safe, and balance that with our normal kid preferences and our desire to be like the other kids! It definitely would have made her life, and ours, so much easier.