Tracey B.

"My husband was forced to leave the job he loved to find one with benefits, as our private plan would no longer cover Matthew’s pre-existing condition."

Our son Matthew was first diagnosed with asthma at 9 months of age. At 18 months, after an extremely critical episode, we were told that one of us would have to leave work to take care of him full-time. Ultimately, although I was the one with medical coverage – as my husband, Mike, was a consultant – we made the decision that I would be the one to leave my career of 14 years in – believe it or not – clinical research (this irony is not lost on us). The repercussions of that decision were not evident at the time.

We had to purchase a $400-a-month private insurance plan to help with medication costs. But with our income now nearly cut in half, the drug plan, 2 cars, a mortgage, co-payments, and non-prescription medications it was clearly not enough to cover the bills. Eventually, my husband was forced to leave the job he loved to find one with benefits as our private plan would no longer cover Matthew’s – now – pre-existing condition.

Matthew's daily drug regime includes the short-acting brochodilator salbutamol that deals with the muscle constriction, the corticosteroid fluticasone (now in a combination drug with a long-acting bronchodilator) which helps reduce the swelling of the mucous membrane and Singulair, a specialized anti-allergy medication. Any additional prescriptions from hospitalization – like prednisone or dexamethazone – are added to his daily regime. Moreover, his normal regime use spikes as well!

Matthew has been in the emergency room at least 13 times in the last year (eventually you can lose track). When you add non-covered medications such as Benadryl or seasonal allergy pills it's easy to see that our drug costs can look like a second mortgage.

But irony was not done with us! Our daughter, Michelle, who often acts as both Matthew’s advocate and crisis support was diagnosed with anaphylaxis toward both latex (often in ER rooms) and – get this – salbutamol. The very drug that Matthew needs in emergencies. Sigh.

Managing our life has enough challenges! But adding the insult of fighting for drug coverage or paying for co-payments that really amount to a tax on the sick, can sometimes just be too much.