Most people are familiar with asthma, a respiratory condition that affects millions of people, but few have heard of the more serious and rare condition effecting less than 1% of asthmatics called brittle asthma. Asthma itself has a great deal of misunderstanding. Some diagnosed asthmatics are asymptomatic most of the time, but have a Ventolin puffer for the one or two times a week/month/year they may need a bronchial dilator. Others require daily inhaled steroids that control their asthma with the occasional Ventolin use. Still others will say they have asthma with a cigarette in one hand and an inhaler in the other to use following it, because they have occasional wheezing.
Subtypes
In brittle asthma the condition is still caused by inflammation and constriction of the airways, however it does not respond to regular asthma treatment. Brittle asthma causes a deterioration of health and often leads to disability or death. Very few people, even asthma associations, understand the devastating effect of brittle asthma on the lives of patients and their families.
Disability programs prove to be challenging to access because brittle asthma is so misunderstood. It is very different from other asthma conditions on the spectrum. in that most professionals expect that all asthma responds to treatment. Applications are denied and must be appealed, yet with declining health this is a difficult and lengthy process to pursue.
Brittle Asthma Cannot be Controlled
Individuals with brittle asthma may have either chronic non controlled asthma, or asthma that is relatively stable, but flairs up with severe attacks with little or no warning through gradual symptom increase. Generally asthmatics are told that if they are using a puffer once a day, then their asthma is not controlled and they should be on a steroid inhaler. Brittle asthmatics will use regular inhaled steroids along with other asthma medications and still require a bronchial dilator. They often require prednisone, an oral steroid medication to reduce the inflammation, or hospitalization.
Co-morbidity
Other health conditions regularly follow the original condition of brittle asthma, such as osteoporosis due to steroid use, cataracts from inhaled steroids, fractures, osteoarthritis, weakened immune response and cardiovascular conditions due to lifestyle limitations.
A person with brittle asthma may no longer be able to work due to the severity of their symptoms, or other related health issues. Pneumonia, influenza, colds and infections are common, and cause even greater exacerbations of symptoms.
Typical medications used in brittle asthma include:
- bronchial dilators – Ventolin, Bricanyl and Atrovent; also Spiriva which is commonly used for COPD
- inhaled corticosteroids – Pulmicort, Flovent, Qvar
- long acting bronchial dilators – Serevent
- leukotriene-receptor antagonists – Singulaire, Accolate
- combination steroid/bronchial dilator – Symbicort, Advair
- anti-IgE (IgE is an antibody produced by the body which causes allergic reactions) – Xolair (typically 1–4 injections per month, at $900 per shot)
- oral steroids – prednisone, prednisolone, dexamethasone
- epinephrine for anaphylaxis – Epi Pen
- acid reflux prevention – Pantaloc, Xanax
- antihistamines – Reactine, Claritin, Allegra, Benedryl
- nasal steroid sprays – Nasonex
Cost of Survival
Without health benefits, asthma can be very difficult to manage. While typical medications are covered under personal health plans or the ODB (Ontario Drug Benefit or Trillium program) there are medications that are proving to improve the lives of brittle asthmatics that are not. In addition, with the ODB, patients have to spend a certain amount of their income before they even qualify for these benefits. These drugs help prevent hospitalizations, and reduce disability and death. While this would be an overall benefit to taxpayers, the patient and the family, the Ontario Government does not seem to make such progressive decisions towards prevention. It is frustrating to know that an addict can get methadone for free; a program costing Ontario taxpayers $180 million per year, but an asthmatic can be denied the simple right to a breath. Why one group of patients has less value placed on them is incomprehensible.
For most people the 20,000 breaths taken per day go unnoticed…for a brittle asthmatic not one of these breaths can be taken for granted. With good medical treatment lives can be significantly improved however more access to the necessary medications and programs must be a priority.
Resources
The Ontario Lung Association
Asthma/Allergy Clinic, London Health Sciences Centre (South Street) findings from doctor and patient experiences
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